Huh, I still have a blog here. One would assume I'd forgotten all about it and, in a way, one would be correct in that assumption. What the heck have I been doing? Life, my friends. Life. So what brings me back here to the blogosphere?
I got an email.
Yep, I got a very nice email from a person who read the blog and wanted to ask me some questions. I was pretty excited to get that email because I've always invited people to reach out if they felt inclined and it's been awhile since anyone took me up on the offer.
It also reminded me of why I started this blog in the first place! Sure, it's kind of neat for me to be able to go back through and have a record of my journey. The real purpose was always to share as much as I could about my experience with other people. I wanted IBD people to know they weren't alone out there. I wanted people to know they could have an ostomy or a j-pouch and still do things like distance running. I wanted to share information and, if I was lucky, spread a little hope.
I honestly didn't think anyone was still reading or getting anything out of my ramblings anymore. Then I got an email. In my typical fashion, I crafted a rather long-winded response which I'd like to share here. Names are withheld to protect the innocent and all that but, I feel like this is a nice synopsis of where I am right now.
Nice email writer,
Ok. Finally settling in for the evening and have a few moments to write a more complete response. Sit back and get comfy....I am wordy!
First, thank you for writing to me! It was a good reminder that I need to update the blog because people do actually still read it and get benefit from it. I will be sure to do that....hopefully tomorrow.
The question of whether to go forward with the j-pouch is such a tricky one. Every situation is so different and I really think the only person who can decide is the person who has to wake up and live it every day. That would be you. :-) What I can do is share my experience and give that to you as one more piece of the puzzle to ponder.
I am honestly doing really well. It took time, and some rocky moments, to get here but here I am. Since my take down in January 2012 I've run three half marathons. I keep up with two very active little boys (oh the driving involved!) and I'm a full time student.
I really don't think about my j-pouch much at all. I have to pay extra attention to keeping hydrated but, I had that with the ileo too. I eat what I want, though I do try not to eat too large a quantity of veggies in one sitting as it seems to cause some cramps sometimes. I'm a vegetarian though, so I still take in plenty of fruits and veggies, beans, etc with no problems. I am lucky enough to not need any meds (Immodium, Metamucil, etc) or skin creams. We got a bidet toilet seat early on and it has been worth every penny. I would say I make 6-8 bathroom trips over 24 hours but, never in an urgent have to hurry way. I'm now able to sleep 6-7 hours without needing to get up unless I've had a lot to eat late in the evening (then it's more like 4-5 hours). I was running with my husband on Monday and told him this is the healthiest I've been in seven years. :-)
I won't sugar coat things. The process was rough. Surgery 1 was ok, especially once the ostomy learning curve leveled off. Surgery 2 is really tough. The recovery can be long and it takes a lot out of you. Take down surgery itself is physically easier but, there are lots of things that can mess with your head along the way. When the new pouch is going through its growing pains, it is frighteningly like UC with the time on the toilet and dreadfully waiting for something to go wrong.
So, that's my story. I have no regrets. People like to add "except I wish I'd done it sooner" to that statement but I've moved away from that. The process was basically a walk through hell. I think I had to get as sick as I did in order to endure the whole thing. That may not be true for everyone but, that's how I feel about it.
I guess my advice would be to take your time and search inside yourself to see what feels right for you. Do you feel like it is worth the potential risks to change away from the ileo? That is really all you are changing. I wouldn't call having the ileo bad but, I have to admit I was glad when that phase of my process was over. It was the right thing for me but, that doesn't make it right for everyone.
It could be that this wasn't helpful at all, LOL. I just hesitate to ever tell anyone what they should do in these situations. There are so many factors that make each of our cases unique. In the end, you have to wake up and live your decision every day so it has to be the thing that feels most right to you.
Feel free to write again if you like. I'm happy to answer any other questions. I figure if I had to go through all of this, at least I can have helping other people as a positive outcome. If you're comfortable sharing, I would like to know what you end up deciding to do.
There it is. How I am doing a bit over one year after take down. I would also like to add that I am waiting with fingers crossed for my notice of acceptance to nursing school. I've been working my butt off (haha!) with lots of awesome but tough science classes and stuff so, hopefully it's all ready to pay off. My other bit of news is that I am running in a team relay event here in three weeks. It's this 24 hour thing with six runners covering something like 120 miles. I have 17 miles broken up over three sections. I'm pretty pumped about it. I am also kicking off an attempt at training for my first ever full marathon. Keep your fingers crossed for me that I'm tough enough to hang with it and finish my goal race in October.
Big thanks to those of you still checking in and those who are new and finding me for the first time. It does mean a lot to feel like I can do something to help people through the crappy situation we are stuck in. (Witty pun, woot! Ok, not really).
Thursday, May 30, 2013
Sunday, September 16, 2012
Let's Catch Up!
Wow, a lot has happened since I last posted here. Bad blogger, bad! Ok....to get us all back on the same page:
I did see the hematologist and they set me up with an iron transfusion. This is what I wrote about it on a support board:
I got the inFed infusion where you get one large dose of iron. There is another type where you have to make multiple visits getting smaller doses each time. Friday morning I arrived at the infusion center at 8:00 am. They were very busy with folks there to get chemo, blood, etc so I had a bit of a wait before we could get started.
Finally, around 9:00, they started my IV and hung a small bag of saline to flush things and give my pre-meds. I got a small dose of Benadryl and one other thing I can't remember to help prevent reaction. Then I got my test dose of the iron solution. This is a mini bag which they run to see if you will have a reaction to the iron solution before giving the full dose. All I felt during this time was a slight fuzzy headed feeling from the Benadryl. Once 30 minutes had passed, they started the full dose of the iron solution. I was walking out the door by 3:00 pm.
The only issue I had was being cold (which always happens to me with IV) and getting hungry (I brought a small snack but really needed a lunch). My nurses got me a warmed blanket and some Boost and I was fine. I mostly spent the time watching Netflix on my iPad. By the next day I felt what I considered a marked increase in energy. That feeling lasted throughout the weekend and I did some good running. Today I am feeling sort of tired again, but it could be delayed effects from the infusion which they warned me about. Should go away in a day or so.
This was back on July 27'ish. Another entry for the Things They Don't Tell You file:
I felt crazy good the evening I got the infusion. It was almost freakish how energetic I felt. I got up the next morning and ran seven miles with my training friends. That Monday I ran four more. Then I hit a wall! I actually felt worse than before I went in for the treatment. I was really depressed thinking it hadn't worked and something was majorly wrong. About four weeks after the infusion I had my follow up appointment. I was feeling a bit better. My labs came back normal and I was really relieved! I told the nurse practitioner about my high and crash and she said, "Oh yeah, that was probably the steroid we give you to avoid a reaction. That happens pretty often." Would have been nice to know about this so I would have known what I experienced was normal. Oh well, now I get to tell all of you so that you will know if you are ever in this situation!
Fast forward to now....I am on a schedule of monthly labs. In fact, I get my first recheck next week. I have a three month follow up with hematology. If everything still looks good then we will stretch the lab draws and follow ups out until I can eventually quit going if things stay stable. Hopefully this anemia mess was just a result of the cumulative effects of the surgeries and my infusion experience will be a one and done type of thing.
So how am I doing now? I couldn't be better! I've had my active j-pouch for about eight months and have never had any significant issues. I experience the typical 6-8 movements per day and can sleep 6-7 hours uninterrupted. I am taking classes full time and have no trouble sitting in lecture for a couple of hours at a time (well, except for some boredom once in awhile!). I am very busy with my boys and their activities and I love being able to spend an hour or more on the soccer sideline without once worrying about having to duck into the port-a-potty. What might be the best part though.....I am doing some of my best running ever! This training season started out pretty rough fighting the anemia but, now that my counts are back where they should be, I'm training well and doing some of the best racing I've ever done.
So, yes, when people ask me if I am happy with my choice I tell them I absolutely am.
I did see the hematologist and they set me up with an iron transfusion. This is what I wrote about it on a support board:
I got the inFed infusion where you get one large dose of iron. There is another type where you have to make multiple visits getting smaller doses each time. Friday morning I arrived at the infusion center at 8:00 am. They were very busy with folks there to get chemo, blood, etc so I had a bit of a wait before we could get started.
Finally, around 9:00, they started my IV and hung a small bag of saline to flush things and give my pre-meds. I got a small dose of Benadryl and one other thing I can't remember to help prevent reaction. Then I got my test dose of the iron solution. This is a mini bag which they run to see if you will have a reaction to the iron solution before giving the full dose. All I felt during this time was a slight fuzzy headed feeling from the Benadryl. Once 30 minutes had passed, they started the full dose of the iron solution. I was walking out the door by 3:00 pm.
The only issue I had was being cold (which always happens to me with IV) and getting hungry (I brought a small snack but really needed a lunch). My nurses got me a warmed blanket and some Boost and I was fine. I mostly spent the time watching Netflix on my iPad. By the next day I felt what I considered a marked increase in energy. That feeling lasted throughout the weekend and I did some good running. Today I am feeling sort of tired again, but it could be delayed effects from the infusion which they warned me about. Should go away in a day or so.
This was back on July 27'ish. Another entry for the Things They Don't Tell You file:
I felt crazy good the evening I got the infusion. It was almost freakish how energetic I felt. I got up the next morning and ran seven miles with my training friends. That Monday I ran four more. Then I hit a wall! I actually felt worse than before I went in for the treatment. I was really depressed thinking it hadn't worked and something was majorly wrong. About four weeks after the infusion I had my follow up appointment. I was feeling a bit better. My labs came back normal and I was really relieved! I told the nurse practitioner about my high and crash and she said, "Oh yeah, that was probably the steroid we give you to avoid a reaction. That happens pretty often." Would have been nice to know about this so I would have known what I experienced was normal. Oh well, now I get to tell all of you so that you will know if you are ever in this situation!
Fast forward to now....I am on a schedule of monthly labs. In fact, I get my first recheck next week. I have a three month follow up with hematology. If everything still looks good then we will stretch the lab draws and follow ups out until I can eventually quit going if things stay stable. Hopefully this anemia mess was just a result of the cumulative effects of the surgeries and my infusion experience will be a one and done type of thing.
So how am I doing now? I couldn't be better! I've had my active j-pouch for about eight months and have never had any significant issues. I experience the typical 6-8 movements per day and can sleep 6-7 hours uninterrupted. I am taking classes full time and have no trouble sitting in lecture for a couple of hours at a time (well, except for some boredom once in awhile!). I am very busy with my boys and their activities and I love being able to spend an hour or more on the soccer sideline without once worrying about having to duck into the port-a-potty. What might be the best part though.....I am doing some of my best running ever! This training season started out pretty rough fighting the anemia but, now that my counts are back where they should be, I'm training well and doing some of the best racing I've ever done.
So, yes, when people ask me if I am happy with my choice I tell them I absolutely am.
Tuesday, June 26, 2012
Time to Get Real!
Here's an interesting development: all of my tests are normal. My hemoglobin and iron store numbers are now back on the bottom rungs of the "normal" ladder. No celiac disease/gluten insensitivity. Normal liver panel, blood counts, thyroid function, and clotting factors. My B 12 levels are great. Huh.
Our operating theory at this point is that I feel like crap because:
1) I had three surgeries and four hospital stays from March 2011-January 2012. Along the way I also gave up my colon, so there's that.
2) Recovery from my surgeries meant a restricted, and often nutritionally lacking, diet. Think almost no veggies, very little fruit, low fiber, lots of soft "white" easy to digest foods. I'm just now able to eat more normally.
3) I do not get consistent sleep. This has been a problem for years. Time to fix that.
4) I need to adjust my own expectations and additude.
I really, really, really need to clean up and rethink my diet. I eat way too many "junk" carbs meaning processed stuff like cereal, crackers, and bread. I eat way too much processed stuff, period. My habits around eating fruits and vegetables are seriously deteriorated. I don't get enough quality protein. I have to change these things. I will. I know how and what to do, it's time to do it.
I need to be nicer to my body and less demanding upon it. Aside from better fuel, I need to give my body adequate rest. I need to hydrate consistently. I need to quit being disappointed and discouraged that a body that was dragged through hell last year doesn't seem quite ready to train for a marathon. Yes, I ran other races along the way...but that was mostly prior to that whole November to January window where everything pretty much sucked from a physical stand point. I somehow managed to get it together enough to drag myself down to Georgia for that race, but I shouldn't have. I knew it, too...but you would have never got me to admit it at the time. It's ok, that is in the past and I don't regret it one bit. I needed that one mentally even if it wasn't smart physically. Now though, I need to cut myself some slack.
I am not running the Columbus Marathon in October. There, I said it. First time I have acknowledged that to anyone else. I have a lot of mixed feelings but, I'll tell you one thing....I dropped my training schedule on the MIT website back to the half, looked at the new numbers, and felt relief. It is the right thing to do. It doesn't mean never, it just means not right now. The marathon isn't going anywhere and neither is my training group. There will be time and opportunities when I am ready.
So that's where we are. I will see a hematologist next Friday to see if we should do some IV or injected iron to get my levels back up more quickly. They have improved, but it is taking a very long time. We will see what they say. For now, I will be working on the stuff mentioned above and hopefully moving back into a place of normalcy. Sometimes I think I've been sick for so long that I'm not sure how to be a "well person" anymore. It is time to relearn.
Our operating theory at this point is that I feel like crap because:
1) I had three surgeries and four hospital stays from March 2011-January 2012. Along the way I also gave up my colon, so there's that.
2) Recovery from my surgeries meant a restricted, and often nutritionally lacking, diet. Think almost no veggies, very little fruit, low fiber, lots of soft "white" easy to digest foods. I'm just now able to eat more normally.
3) I do not get consistent sleep. This has been a problem for years. Time to fix that.
4) I need to adjust my own expectations and additude.
I really, really, really need to clean up and rethink my diet. I eat way too many "junk" carbs meaning processed stuff like cereal, crackers, and bread. I eat way too much processed stuff, period. My habits around eating fruits and vegetables are seriously deteriorated. I don't get enough quality protein. I have to change these things. I will. I know how and what to do, it's time to do it.
I need to be nicer to my body and less demanding upon it. Aside from better fuel, I need to give my body adequate rest. I need to hydrate consistently. I need to quit being disappointed and discouraged that a body that was dragged through hell last year doesn't seem quite ready to train for a marathon. Yes, I ran other races along the way...but that was mostly prior to that whole November to January window where everything pretty much sucked from a physical stand point. I somehow managed to get it together enough to drag myself down to Georgia for that race, but I shouldn't have. I knew it, too...but you would have never got me to admit it at the time. It's ok, that is in the past and I don't regret it one bit. I needed that one mentally even if it wasn't smart physically. Now though, I need to cut myself some slack.
I am not running the Columbus Marathon in October. There, I said it. First time I have acknowledged that to anyone else. I have a lot of mixed feelings but, I'll tell you one thing....I dropped my training schedule on the MIT website back to the half, looked at the new numbers, and felt relief. It is the right thing to do. It doesn't mean never, it just means not right now. The marathon isn't going anywhere and neither is my training group. There will be time and opportunities when I am ready.
So that's where we are. I will see a hematologist next Friday to see if we should do some IV or injected iron to get my levels back up more quickly. They have improved, but it is taking a very long time. We will see what they say. For now, I will be working on the stuff mentioned above and hopefully moving back into a place of normalcy. Sometimes I think I've been sick for so long that I'm not sure how to be a "well person" anymore. It is time to relearn.
Sunday, June 24, 2012
That Is Good News, Right?
Sorry for the delay in updating about the scopes. I did have my upper and lower endoscopies done. This was after much drama and interrogation of every single medical person who came within my line of vision after they handed me a consent form for a colonoscopy! I asked the nurse, "Did they tell him I don't have a colon?" (this was a GI I've never seen) She assured me he knew but this was the most appropriate paper they had for me to sign. I waffled a moment before adding a note about my lack of colon above the signature area and then I signed. Another nurse came to start my IV and she got quizzed, "Does the doctor know I don't have a colon? He can't stick a regular colonoscopy scope on there!" She attempted to reassure me, but I was sort of freaking out. Finally, the nurse who would be with me in the procedure room came and got the same third degree. She promised me he knew and already had the instruments he needed ready to go. She finally set me at ease when she promised me she wouldn't give me any sedative or drugs until I got a chance to ask him myself. So I did and he assured me he knew and it would be fine and I then took my Demerol and Versyd nap like a good patient.
Everything was good on the scopes. I have a very minor hiatal hernia, but nothing to be concerned about and certainly not the cause of my issues. I am still waiting to hear about a biopsy they took for celiac disease, but he said he didn't see any visual indication of damage that they often see with that. All good news, right? Well, yes and no.
I am still in bad shape. I managed to run a couple of times a week or so ago. Nothing crazy...four miles Thursday before last, three on Saturday, then three again that Monday. Nice and easy paces, shouldn't have been a problem. By the time I got out of class around noon on Tuesday I was so tired I felt disoriented and couldn't find my car for a good while. I managed to get myself home where I plopped down in a recliner and promptly went to sleep. I slept all afternoon until my husband got home from work with the kids. That evening I knew the fatigue was back and I was really upset to be right back to square one again. Then things got even more weird.
I started noticing this weird discoloration to my skin. A couple of spots on one leg, then popping up all over my arms. It is hard to describe. I hesitate to call it a rash, because there wasn't anything bumpy or itchy. It was more like white spots or splotches. My skin just had these defined areas that were significantly paler than the rest of me, which is saying something! Over a day they multiplied and was finding at least a few everywhere, but tons on my arms. Then, it started going away and I was relieved. Except, the white splotchy things were replaced with these flat, red, pin point dots. It looks like someone has been sneaking up on me when I'm not looking and dotting me with a red felt tip pin. I got my Dr. Google on and it seems the most likely scenario is something called petechia. Basically, bleeding into the skin. So far mine is minor compared to the pictures on the interwebz, but it is there and making steady advancement over the past couple of days. I also have this bruised looking stuff going on with my fingers that decided to show up yesterday. Possibilities range from some weird virus to serious shit that will kill you. I felt so weird about going back to the doctor when I have a hematology appointment, but it is a month away. I've been seriously anemic for at least five months now plus this new stuff with the red dots, bruised looking fingers, insane exhaustion, and over the last day or so confusion and difficulty concentrating. You don't even want to know how long it is taking me to write this! *sigh* I'm going to call my primary doctor in the morning. I think, at a minimum, we need to see some labs and make sure my platelets and/or red blood cells aren't in some danger zone. I need to know it is safe to wait until my hematology appointment. Honestly though, July 24 is so far away and I am so deeply tired I don't know how I will get there.
The most insane part of the whole thing is how I've been trying to ignore this and carry on. I think I got so used to soldiering on and not letting on as to how sick I was with UC that I've been trying to handle this in the same way. That obviously is not a viable option.
Everything was good on the scopes. I have a very minor hiatal hernia, but nothing to be concerned about and certainly not the cause of my issues. I am still waiting to hear about a biopsy they took for celiac disease, but he said he didn't see any visual indication of damage that they often see with that. All good news, right? Well, yes and no.
I am still in bad shape. I managed to run a couple of times a week or so ago. Nothing crazy...four miles Thursday before last, three on Saturday, then three again that Monday. Nice and easy paces, shouldn't have been a problem. By the time I got out of class around noon on Tuesday I was so tired I felt disoriented and couldn't find my car for a good while. I managed to get myself home where I plopped down in a recliner and promptly went to sleep. I slept all afternoon until my husband got home from work with the kids. That evening I knew the fatigue was back and I was really upset to be right back to square one again. Then things got even more weird.
I started noticing this weird discoloration to my skin. A couple of spots on one leg, then popping up all over my arms. It is hard to describe. I hesitate to call it a rash, because there wasn't anything bumpy or itchy. It was more like white spots or splotches. My skin just had these defined areas that were significantly paler than the rest of me, which is saying something! Over a day they multiplied and was finding at least a few everywhere, but tons on my arms. Then, it started going away and I was relieved. Except, the white splotchy things were replaced with these flat, red, pin point dots. It looks like someone has been sneaking up on me when I'm not looking and dotting me with a red felt tip pin. I got my Dr. Google on and it seems the most likely scenario is something called petechia. Basically, bleeding into the skin. So far mine is minor compared to the pictures on the interwebz, but it is there and making steady advancement over the past couple of days. I also have this bruised looking stuff going on with my fingers that decided to show up yesterday. Possibilities range from some weird virus to serious shit that will kill you. I felt so weird about going back to the doctor when I have a hematology appointment, but it is a month away. I've been seriously anemic for at least five months now plus this new stuff with the red dots, bruised looking fingers, insane exhaustion, and over the last day or so confusion and difficulty concentrating. You don't even want to know how long it is taking me to write this! *sigh* I'm going to call my primary doctor in the morning. I think, at a minimum, we need to see some labs and make sure my platelets and/or red blood cells aren't in some danger zone. I need to know it is safe to wait until my hematology appointment. Honestly though, July 24 is so far away and I am so deeply tired I don't know how I will get there.
The most insane part of the whole thing is how I've been trying to ignore this and carry on. I think I got so used to soldiering on and not letting on as to how sick I was with UC that I've been trying to handle this in the same way. That obviously is not a viable option.
Sunday, June 3, 2012
Meanwhile....
I realized I really need to do an update to bring things up to speed or else here in a week or so I'm going to be talking about things that don't make sense without a bit of back story. So, here we go.
Coming out of my half marathon three weeks or so ago, I was extremely tired. I actually crawled into bed before having a post-race meal which isn't like me at all. Don't worry, I didn't lay there for long before my body demanded food so I did end up eating and then falling asleep right away. I got seven or so hours of sleep that night, but the next day I slept for almost the entire eight hour drive home and was still ready for an early bedtime. On Monday I sat in my classes barely able to absorb what my teachers were saying. I really thought all of this was just post-race fatigue, but I couldn't remember ever feeling so poorly after any race before. I was also getting the head rushes upon standing up and getting completely winded going up a couple of flights of stairs. I'd just run 13 tough miles, none of it made sense.
I got in to see my PCP on Tuesday that week. She wanted new labs and they confirmed what we both already expected, the anemia was back. This time my hemoglobin was down to 10 and my ferretin had fallen all the way down to seven. My total red blood cell count was just hovering at the low end of normal but was now lower than previously. I was without iron stores and terribly low on the essential protein that transports oxygen to the body's cells. None of this is good.
I don't really know what happened. My numbers weren't great when I started my running back up, but they weren't this terrible either. All I can figure is whatever is causing me to lose more blood than my body can replace was aggravated by the strain of running the race. I'm getting an upper and lower GI scope on Thursday to try to figure out what is going on. Evidently, when you have major iron deficiency anemia the GI tract is a common culprit so this is one of the first things they want to rule out. The possibilities run the gamut from a bleed at the join of the j-pouch, to celiac disease (causes iron malabsorption), to ulcers, to some new manifestation of IBD. There is also the potential that they will get in there and find a big ol gastric cancer tumor, but I refuse to entertain that possibility right now. It is also possible that they won't find anything at all and this will remain a mystery. In that case, I believe my next stop is the OB-Gyn to rule out bleeding fibroids or endometriosis or some other mystery ailment of the lady bits variety. I don't think it will be something like that, but you never know. If we are still baffled at that point and my numbers are still so terrible, then I think the next step is a hematologist.
It's all very frustrating. On the one hand, I hope to have an answer after Thursday. On the other, I'm afraid of what the answer might be. I have a gnawing fear that they will come back and tell me I actually have Crohn's and, oops, now it's in my stomach or small intestine and I'll end up having to take the very drugs I went through all of this surgery to avoid. I don't know. I'm also worried because anything that requires surgery or a hospital stay is going to mean dropping my classes for summer and delaying my progress toward my nursing degree. I just want to have my life and do normal things. That's where I'm supposed to be right now and it's all so far out of reach.
Coming out of my half marathon three weeks or so ago, I was extremely tired. I actually crawled into bed before having a post-race meal which isn't like me at all. Don't worry, I didn't lay there for long before my body demanded food so I did end up eating and then falling asleep right away. I got seven or so hours of sleep that night, but the next day I slept for almost the entire eight hour drive home and was still ready for an early bedtime. On Monday I sat in my classes barely able to absorb what my teachers were saying. I really thought all of this was just post-race fatigue, but I couldn't remember ever feeling so poorly after any race before. I was also getting the head rushes upon standing up and getting completely winded going up a couple of flights of stairs. I'd just run 13 tough miles, none of it made sense.
I got in to see my PCP on Tuesday that week. She wanted new labs and they confirmed what we both already expected, the anemia was back. This time my hemoglobin was down to 10 and my ferretin had fallen all the way down to seven. My total red blood cell count was just hovering at the low end of normal but was now lower than previously. I was without iron stores and terribly low on the essential protein that transports oxygen to the body's cells. None of this is good.
I don't really know what happened. My numbers weren't great when I started my running back up, but they weren't this terrible either. All I can figure is whatever is causing me to lose more blood than my body can replace was aggravated by the strain of running the race. I'm getting an upper and lower GI scope on Thursday to try to figure out what is going on. Evidently, when you have major iron deficiency anemia the GI tract is a common culprit so this is one of the first things they want to rule out. The possibilities run the gamut from a bleed at the join of the j-pouch, to celiac disease (causes iron malabsorption), to ulcers, to some new manifestation of IBD. There is also the potential that they will get in there and find a big ol gastric cancer tumor, but I refuse to entertain that possibility right now. It is also possible that they won't find anything at all and this will remain a mystery. In that case, I believe my next stop is the OB-Gyn to rule out bleeding fibroids or endometriosis or some other mystery ailment of the lady bits variety. I don't think it will be something like that, but you never know. If we are still baffled at that point and my numbers are still so terrible, then I think the next step is a hematologist.
It's all very frustrating. On the one hand, I hope to have an answer after Thursday. On the other, I'm afraid of what the answer might be. I have a gnawing fear that they will come back and tell me I actually have Crohn's and, oops, now it's in my stomach or small intestine and I'll end up having to take the very drugs I went through all of this surgery to avoid. I don't know. I'm also worried because anything that requires surgery or a hospital stay is going to mean dropping my classes for summer and delaying my progress toward my nursing degree. I just want to have my life and do normal things. That's where I'm supposed to be right now and it's all so far out of reach.
Thursday, May 17, 2012
I Ran My Race!
And I survived! :-) This is a report I put together for a running website I frequent, so excuse the references to obscure people you've never heard of and all of that. I am so pumped up to have actually done this and done it well. A definite "Yes!" answer to the question, "Can I still lead an active life after j-pouch surgery?"
To begin at the beginning....I ran TA for the first time in 2009. It was a 5:07 suffer-fest, but even I sat at the finish all sore and defeated I was already thinking about coming back again and doing it better. In 2010 I was busy growing a human, so it was decided that 2011 would be the year. As I started the training cycle that year, the ulcerative colitis I'd been battling for four years really decided to start playing mean. I was sicker and sicker all the time and on higher and higher doses of Prednisone that we're doing nothing to help me. Finally, in March, a surgeon at Cleveland Clinic told me I wouldn't make it to May in any condition to run a race, so I gave in and scheduled my colectomy.
From March to October, I adjusted to life with an ileostomy and got back into training and ran an awesome half at Columbus with a 20 minute PR. It was amazing and I couldn't believe how strong I was now that I wasn't sick all of the time. A few days later, I went in for surgery #2 which was a bunch of crazy reconstruction stuff so that they could eventually hook my innards back up and get rid of the ileostomy. This recovery was really difficult with complications and I came into the new year extremely weak but committed to starting training. In January I had my third and final surgery. I was now all back in one piece and felt ready to get to work. After about four weeks of recovery, I started training only to find I was incredibly exhausted after each workout. I would eventually find out that my illness at the end of the year had left me extremely anemic and deficient in some key vitamins and things. I was ordered to take an extra month off from running which was mentally very difficult for me to do after waiting so long to get started. I managed to listen to my doctor though and finally got to start training in earnest in the latter part of March. I squeezed in as much as I could without overdoing things and managed to work in one 11 and 12 mile run toward the end. My fitness came back pretty well, all things considered, and I felt pretty confident heading down to Georgia.
The trip down was mostly uneventful and I was so happy to meet up with folks at the pasta dinner since I missed that the first time. We took the newbie with us and THG pretty much adopted him on the spot and spent a good part of the dinner walking around with him on her hip. Jasz, OT, wsd, and Cookie Monster were all there and it was good to see them again. Brney was there, too and it was my first time meeting her. She couldn't have been nicer or more adorable and the newbie was instantly smitten with her.
I woke up Saturday morning and just wanted to puke because I felt so nervous. I was afraid I would get lost. Really afraid. I also had no idea if I would be able to keep up with my hydration and electrolyte needs now that I didn't have my colon. I hadn't really been tested in these kind of conditions yet. I figured there was only one way to find out and I would either finish and it would be awesome or I would be carted off by medics and it would suck. Down to the lake and a good bit of time milling about and waiting for the start. We got our pre-race instructions and off we went. I almost instantly realized my shoes were way too loosely tied and my feet were sliding around like crazy just with the camber of that initial grassy area around the lake. I figured I had better fix that now or I would be really sorry in an hour or so. The same thought process cropped up when I saw some port-a-potties at the start of the campgrounds. Once all that was taken care of, everyone was gone and I was alone. I would basically run alone for the rest of the race, and I knew it.
As I got to the trail portion, there was instant up and I switched to a walk. Then, it seemed like everyone in the race came spilling down the hill toward me. Lots of encouragement, including a high five from Brney, but it was all just another reminder of how damn far behind I was already. I knew this was going to be largely about me and my own head and prepared my mindset for the rest of the journey. I started thinking then about Relentless Forward Progress, a book about trail running that I've yet to read but I love the title. I just kept telling myself that whether it was a run, scramble, or walk I just needed Relentless Forward Progress and to keep moving and make it happen. A lot of this loop was kind of jumbled together in my mind, but I definitely remember the fire break. It really is where giant bulldozer type things roll through and carve out a path. It was not created with runners in mind whatsoever. The ground was crazy tilty all over, rocks were abundant, and oh my god some silly steep hills! At one point I kept thinking this is what it would be like if Becky's Bluff and a bulldozer somehow had a baby. I keep hearing rumors that this section was only a mile, but I don't believe it one bit. There was also some really nice trail in these sections and I found a lot of the first loop to be really fun. Even the firebreak was fun except I knew the bluff was still to come.
At the halfway stop, I ran into txredd and she really pepped me up a lot and helped me get geared up for the second loop. I was struggling with feeling low fueled and also starting to have some calf spasms. I took my time at this stop making sure I got a full gel in and more salt stick with some extra water. Then I was off for the red loop which meant it would soon be time for the bluff. I had to laugh reading Bama's report about comparing the "memory" of the bluff to what happens to moms after childbirth. I told my husband that exact same thing on our drive home! I was in the hills leading up to the bluff and somehow I had totally forgotten that this wasn't actually it. As I was thinking I was almost done and it wasn't as bad as I remembered, I saw the dreaded sign and realized I hadn't even started yet. I wanted to cry! I kept reminding myself about the Relentless Forward Progress and started the climb. I did have to stop briefly at some points, but just long enough to take a couple of breaths and get moving again. It really was easier to keep moving than to try to keep from sliding/rolling back down the damn hill. Right around the time where I really just wanted to die, I caught a glimpse of wsd and knew I was at the top! Yes! I was so happy to see him! We shared a hug and he took a great picture for me and I was on my way.
The remainder of the course is a good bit of downhill which should be an awesome thing. However, my right knee decided this would be a good time to start feeling like someone was shoving a flaming hot ice pick under my kneecap with every.freaking.step. The pain took my breath away at points, but I had to keep moving since I lack the powers of teleportation. A nice volunteer stopped me to ask me if I was ok and if I needed to drop. Oh god was I tempted, but I have yet to DNF and I couldn't emotionally handle the idea of not finishing. I decided I was going forward until/unless I couldn't anymore and off I went. I lost a lot of time here and there was a point where I knew I wasn't going to make my time goal and that really brought my mood down. I also started beating myself up over how I had to be crazy to think I was going to train for a full when I couldn't even run this half without blowing up. There was a window of time in here where I kind of got delirious and everything looked really bright and weird. I don't know how to explain it really, because I wasn't dizzy or anything, I just was in a weird place mentally. I found myself thinking a lot about my training group at home during this time, and I knew I had to finish no matter how bad I might be hurting right now. I finally kind of snapped out of it and remembered how hard I had to fight to even start this race and that these were crazy conditions that had nothing at all to do with what my marathon training would be like. I ran along the flats and small uphills, and winced my way down the downhills. I finally popped out of the woods and realized I was almost there!
Coming down the road, I could see the bridge and then I could see my husband and the newbie standing there waving at me. I got choked up there, but had to push that feeling down and keep going. Onto the bridge, quick hi to my guys, and then on to the finish. I can't even explain the feelings that swept over me. I was euphoric to have conquered this whole process. I survived, I did it, I am still strong enough to do the kinds of races and things I want to do despite all I've been through. I really can do anything and in that moment I knew it as sure as I've ever known any single fact. I got a hug from Brney and ended up crying all over her, but she was sweet about it. Before long, I was up in the cabin having downed some ibuprofen, taken an ice bath, and passed out in bed. The little rest did me good and I was ready to go for the remainder of the evening's activities.
I'm waiting for the official times to post, but I believe I have a 47 minute PR, maybe 45. Amazing! To me, this course was tougher than the traditional one so I am really proud of what I was able to do. I had 4:20 for a watch time and, though I missed my goal to come in under four hours, I know that was the very best effort I could put in on that day in those conditions so I am satisfied. I am also really happy that my body stood up to conditions as far as hydrating, electrolytes, etc. I had some calf cramping, but not enough to stop me and lots of other folks had the same so I feel ok about it. I feel much more confident going into my training cycle for the full knowing I've endured this tough race and held up pretty well.
To begin at the beginning....I ran TA for the first time in 2009. It was a 5:07 suffer-fest, but even I sat at the finish all sore and defeated I was already thinking about coming back again and doing it better. In 2010 I was busy growing a human, so it was decided that 2011 would be the year. As I started the training cycle that year, the ulcerative colitis I'd been battling for four years really decided to start playing mean. I was sicker and sicker all the time and on higher and higher doses of Prednisone that we're doing nothing to help me. Finally, in March, a surgeon at Cleveland Clinic told me I wouldn't make it to May in any condition to run a race, so I gave in and scheduled my colectomy.
From March to October, I adjusted to life with an ileostomy and got back into training and ran an awesome half at Columbus with a 20 minute PR. It was amazing and I couldn't believe how strong I was now that I wasn't sick all of the time. A few days later, I went in for surgery #2 which was a bunch of crazy reconstruction stuff so that they could eventually hook my innards back up and get rid of the ileostomy. This recovery was really difficult with complications and I came into the new year extremely weak but committed to starting training. In January I had my third and final surgery. I was now all back in one piece and felt ready to get to work. After about four weeks of recovery, I started training only to find I was incredibly exhausted after each workout. I would eventually find out that my illness at the end of the year had left me extremely anemic and deficient in some key vitamins and things. I was ordered to take an extra month off from running which was mentally very difficult for me to do after waiting so long to get started. I managed to listen to my doctor though and finally got to start training in earnest in the latter part of March. I squeezed in as much as I could without overdoing things and managed to work in one 11 and 12 mile run toward the end. My fitness came back pretty well, all things considered, and I felt pretty confident heading down to Georgia.
The trip down was mostly uneventful and I was so happy to meet up with folks at the pasta dinner since I missed that the first time. We took the newbie with us and THG pretty much adopted him on the spot and spent a good part of the dinner walking around with him on her hip. Jasz, OT, wsd, and Cookie Monster were all there and it was good to see them again. Brney was there, too and it was my first time meeting her. She couldn't have been nicer or more adorable and the newbie was instantly smitten with her.
I woke up Saturday morning and just wanted to puke because I felt so nervous. I was afraid I would get lost. Really afraid. I also had no idea if I would be able to keep up with my hydration and electrolyte needs now that I didn't have my colon. I hadn't really been tested in these kind of conditions yet. I figured there was only one way to find out and I would either finish and it would be awesome or I would be carted off by medics and it would suck. Down to the lake and a good bit of time milling about and waiting for the start. We got our pre-race instructions and off we went. I almost instantly realized my shoes were way too loosely tied and my feet were sliding around like crazy just with the camber of that initial grassy area around the lake. I figured I had better fix that now or I would be really sorry in an hour or so. The same thought process cropped up when I saw some port-a-potties at the start of the campgrounds. Once all that was taken care of, everyone was gone and I was alone. I would basically run alone for the rest of the race, and I knew it.
As I got to the trail portion, there was instant up and I switched to a walk. Then, it seemed like everyone in the race came spilling down the hill toward me. Lots of encouragement, including a high five from Brney, but it was all just another reminder of how damn far behind I was already. I knew this was going to be largely about me and my own head and prepared my mindset for the rest of the journey. I started thinking then about Relentless Forward Progress, a book about trail running that I've yet to read but I love the title. I just kept telling myself that whether it was a run, scramble, or walk I just needed Relentless Forward Progress and to keep moving and make it happen. A lot of this loop was kind of jumbled together in my mind, but I definitely remember the fire break. It really is where giant bulldozer type things roll through and carve out a path. It was not created with runners in mind whatsoever. The ground was crazy tilty all over, rocks were abundant, and oh my god some silly steep hills! At one point I kept thinking this is what it would be like if Becky's Bluff and a bulldozer somehow had a baby. I keep hearing rumors that this section was only a mile, but I don't believe it one bit. There was also some really nice trail in these sections and I found a lot of the first loop to be really fun. Even the firebreak was fun except I knew the bluff was still to come.
At the halfway stop, I ran into txredd and she really pepped me up a lot and helped me get geared up for the second loop. I was struggling with feeling low fueled and also starting to have some calf spasms. I took my time at this stop making sure I got a full gel in and more salt stick with some extra water. Then I was off for the red loop which meant it would soon be time for the bluff. I had to laugh reading Bama's report about comparing the "memory" of the bluff to what happens to moms after childbirth. I told my husband that exact same thing on our drive home! I was in the hills leading up to the bluff and somehow I had totally forgotten that this wasn't actually it. As I was thinking I was almost done and it wasn't as bad as I remembered, I saw the dreaded sign and realized I hadn't even started yet. I wanted to cry! I kept reminding myself about the Relentless Forward Progress and started the climb. I did have to stop briefly at some points, but just long enough to take a couple of breaths and get moving again. It really was easier to keep moving than to try to keep from sliding/rolling back down the damn hill. Right around the time where I really just wanted to die, I caught a glimpse of wsd and knew I was at the top! Yes! I was so happy to see him! We shared a hug and he took a great picture for me and I was on my way.
The remainder of the course is a good bit of downhill which should be an awesome thing. However, my right knee decided this would be a good time to start feeling like someone was shoving a flaming hot ice pick under my kneecap with every.freaking.step. The pain took my breath away at points, but I had to keep moving since I lack the powers of teleportation. A nice volunteer stopped me to ask me if I was ok and if I needed to drop. Oh god was I tempted, but I have yet to DNF and I couldn't emotionally handle the idea of not finishing. I decided I was going forward until/unless I couldn't anymore and off I went. I lost a lot of time here and there was a point where I knew I wasn't going to make my time goal and that really brought my mood down. I also started beating myself up over how I had to be crazy to think I was going to train for a full when I couldn't even run this half without blowing up. There was a window of time in here where I kind of got delirious and everything looked really bright and weird. I don't know how to explain it really, because I wasn't dizzy or anything, I just was in a weird place mentally. I found myself thinking a lot about my training group at home during this time, and I knew I had to finish no matter how bad I might be hurting right now. I finally kind of snapped out of it and remembered how hard I had to fight to even start this race and that these were crazy conditions that had nothing at all to do with what my marathon training would be like. I ran along the flats and small uphills, and winced my way down the downhills. I finally popped out of the woods and realized I was almost there!
Coming down the road, I could see the bridge and then I could see my husband and the newbie standing there waving at me. I got choked up there, but had to push that feeling down and keep going. Onto the bridge, quick hi to my guys, and then on to the finish. I can't even explain the feelings that swept over me. I was euphoric to have conquered this whole process. I survived, I did it, I am still strong enough to do the kinds of races and things I want to do despite all I've been through. I really can do anything and in that moment I knew it as sure as I've ever known any single fact. I got a hug from Brney and ended up crying all over her, but she was sweet about it. Before long, I was up in the cabin having downed some ibuprofen, taken an ice bath, and passed out in bed. The little rest did me good and I was ready to go for the remainder of the evening's activities.
I'm waiting for the official times to post, but I believe I have a 47 minute PR, maybe 45. Amazing! To me, this course was tougher than the traditional one so I am really proud of what I was able to do. I had 4:20 for a watch time and, though I missed my goal to come in under four hours, I know that was the very best effort I could put in on that day in those conditions so I am satisfied. I am also really happy that my body stood up to conditions as far as hydrating, electrolytes, etc. I had some calf cramping, but not enough to stop me and lots of other folks had the same so I feel ok about it. I feel much more confident going into my training cycle for the full knowing I've endured this tough race and held up pretty well.
Sunday, April 22, 2012
It's been awhile....
I know I'm really overdue for an update, but it's kind of complicated. For awhile, I didn't really want to think about my recovery anymore. I just needed some time that wasn't about that aspect of my life. It was kind of hard to get though since my recovery was still driving everything I did and how I did it. I attempted to pick back up with my running about a month after my takedown surgery. Initially I was just thrilled to be doing it. Then, I noticed I was really battling some heavy fatigue. Things got a little worse and I found I couldn't stand up without getting amazingly light headed and feeling like I might blackout. I went to see my family doc and we figured out that I was super anemic and also majorly deficient in Vitamin D. She ordered an additional month of rest, supplementation, and then a recheck. It was difficult to take that extra time off, but I did rediscover Pilates during that time which was a plus. Fortunately, when I went back for my recheck my numbers were back in the normal range and I got the green light to resume my running. I am happy to report I completed a twelve mile training run yesterday and I will be running a half marathon on May 12th. I'm feeling a bit emotional about the race because it's the one I was supposed to do last spring but had to let go so that I could get my colectomy. It feels good to be going back! My pace still isn't back where I would like it to be, but considering how weak and sick I was as recently as November, I'm thrilled to be right here where I am right now. I'm also really happy that the j-pouch has been so compatible with running. I haven't had any trouble at all once I figured out I need to eat at least an hour before my run. The sports drinks and gels that I take don't cause any issues at all which was something I was worried about when I started back up.
I'm also a third of the way through my first quarter back at school! I am in nursing school now and it has me pretty busy but I love it. I'm currently taking an algebra class, chemistry, and anatomy/physiology so it's a challenge, but in a good way. It feels good to be finally doing something again after all of that downtime. Everything I'm learning is so interesting and I'm looking forward to getting into the profession and helping patients in the future.
Writing has also been tricky because I kind of felt like I didn't have anything to say since my surgery process is over. I finally remembered though how much I combed the Internet looking for stories of what people's lives were like after the j-pouch process and decided there are still things I can contribute. I'm still doing really well. I don't currently use any Imodium or fiber therapy. I'm in the neighborhood of six to eight bathroom visits per day depending on what and how much I eat. I'm easily able to sleep six or so hours at night without interruption, sometimes more. This is all better than I expected way sooner than I expected! We did get the bidet seat for our toilet and I can't recommend that highly enough for people with a j-pouch. I don't have any issues at all with irritation and no longer use any kind of pastes, etc. I do carry flushable wipes in my purse for when I'm out and about and that seems to work great. I know people are always curious about dietary things as well. I'm back on a vegetarian/semi-vegan diet now and am able to just about anything I want. I was surprised to discover that's seem to be lactose intolerant now. I guess it's not that uncommon with small bowel surgery, but I didn't know that until recently. With that being the case, I've opted to go ahead and cut out dairy and eggs as well. I do flex back a bit when eating a restaurant (if there is butter in a dish, etc) but am trying to mostly avoid animal products all together at this point. I'm able to eat tofu, beans, all kinds of steamed veggies, salad, fresh fruit---pretty much everything. I haven't tried some of the biggies like popcorn just yet, but I will at some point. I have had a little bit of nuts in foods (like Luna bars, etc) and that has been fine. I know people also worry about alcohol, but I haven't noticed any issues there. I don't drink much or often these days, but I've had a beer or glass of wine here and there without consequence. Overall, I'm extremely happy with the function of my pouch and would definitely make the decision for surgery again if I had to to.
I'm also a third of the way through my first quarter back at school! I am in nursing school now and it has me pretty busy but I love it. I'm currently taking an algebra class, chemistry, and anatomy/physiology so it's a challenge, but in a good way. It feels good to be finally doing something again after all of that downtime. Everything I'm learning is so interesting and I'm looking forward to getting into the profession and helping patients in the future.
Writing has also been tricky because I kind of felt like I didn't have anything to say since my surgery process is over. I finally remembered though how much I combed the Internet looking for stories of what people's lives were like after the j-pouch process and decided there are still things I can contribute. I'm still doing really well. I don't currently use any Imodium or fiber therapy. I'm in the neighborhood of six to eight bathroom visits per day depending on what and how much I eat. I'm easily able to sleep six or so hours at night without interruption, sometimes more. This is all better than I expected way sooner than I expected! We did get the bidet seat for our toilet and I can't recommend that highly enough for people with a j-pouch. I don't have any issues at all with irritation and no longer use any kind of pastes, etc. I do carry flushable wipes in my purse for when I'm out and about and that seems to work great. I know people are always curious about dietary things as well. I'm back on a vegetarian/semi-vegan diet now and am able to just about anything I want. I was surprised to discover that's seem to be lactose intolerant now. I guess it's not that uncommon with small bowel surgery, but I didn't know that until recently. With that being the case, I've opted to go ahead and cut out dairy and eggs as well. I do flex back a bit when eating a restaurant (if there is butter in a dish, etc) but am trying to mostly avoid animal products all together at this point. I'm able to eat tofu, beans, all kinds of steamed veggies, salad, fresh fruit---pretty much everything. I haven't tried some of the biggies like popcorn just yet, but I will at some point. I have had a little bit of nuts in foods (like Luna bars, etc) and that has been fine. I know people also worry about alcohol, but I haven't noticed any issues there. I don't drink much or often these days, but I've had a beer or glass of wine here and there without consequence. Overall, I'm extremely happy with the function of my pouch and would definitely make the decision for surgery again if I had to to.
Subscribe to:
Posts (Atom)