.....But They Probably Should!
Yes, friends....it's another installment of things they really should tell you at the hospital, or in the patient education materials, so that you won't think you are broken or otherwise slowly dieing when said things inevitably start happening to your person. Let's take it from the top:
Friday morning I finished my run and had a little lunch. I was hanging out with the baby when I felt a weird, kind of itchy, sensation in the area of my wafer. I knew before I even looked what I was going to find. Yep, there it was. A tiny bubble at the edge of the tape with brown yuck peeking out from under it. I'd lost my seal and had no idea why. I had plans to change things out that afternoon while the baby napped, but it looked like I was not going to be able to wait. I plopped the baby in the hallway outside the bouncer in his baby jail...err, exersaucer thingie and got my supplies and things ready for my shower. (Note: said baby screamed his adorable little head off the entire time I was engaged in this process! Eep!)
Once I removed the old pouch, I could see that the top half of the barrier ring was basically gone. I was pondering this and it got me to analyzing the events of the night before. We had gone to dinner with both boys. I ordered a half chicken cobb salad and some soup. The kids were acting a bit crazy, and I found myself attempting to hurry through my meal so we could get out of there. Rule #1: ostomy folk CAN NOT rush through a meal. Ever. I know better than this, so don't ask me what I was thinking. Next time I will just get a to go container and take the stuff home so I can eat at my own pace. At any rate, I woke up at about 3:00 a.m. with some pretty serious gut pain and a suspiciously empty bag. My first thought was a partial blockage. I got up, went to the bathroom, and found the bag wasn't completely empty, but just a little liquid was in there. I did what I was supposed to do and drank some warm water and massaged the area around the stoma for a little while. That seemed to get things moving again and the pain subsided a little bit, so I figured I might as well go back to sleep while waiting to see what happened. I woke up in the morning with a full bag and feeling much better and that was the last I thought about the blockage.
As I was thinking all this over and cleaning the area around my stoma, something happened that thoroughly freaked me out. Pedro started moving a bit, and then output started coming from the base of my stoma. I quickly rinsed it away with the shower spray and waited. It happened again, and more this time. It was also coming out of the regular opening, too. I was confused. I just kept washing it away and waiting and getting more and more freaked out when it kept coming back. It quickly became obvious to me that this was the culprit behind my lost seal. When this stuff was coming out right next to my skin, it was forced under the barrier ring and eventually ate it up and oozed it's way right under the tape. What I couldn't figure out was why on earth this was happening. For a minute I wondered if the blockage had forced output up under my skin somehow and now it was oozing out. Then I realized I would probably be in tons of pain if poo was just randomly floating in my body. I then thought maybe the blockage had blown a hole in the side of the stoma or something, but that didn't seem to make sense either. Surely I would have felt something like that happen? I couldn't figure out what was going on, but it seemed like it certainly wasn't a good thing. I decided I was going to call up to Cleveland Clinic after I got pouched back up. I then had all of these awful visions of them telling me I needed to come up there and get a stoma revision. In my head, I practically had myself checked into the hospital and was wondering how many days I would have to stay. I was not a happy camper.
I want to take this opportunity to say that my surgeon's nurse, Marlene, is one of the most awesome medical people on the planet. When I got her on the phone, she asked what was going on and I told her I was freaking out and why. She explained to me what was going on in a way that I could understand and I quickly realized that I was not going to die or need surgery. Hooray! She asked a few questions about the blockage to make sure I knew why it happened and how to prevent it (yes, get a babysitter when I want to go to dinner!) and then a few other general questions just to assess how I was doing. She did not make me feel stupid or crazy for being scared half to death about what had happened. Marlene rocks!
So, what did she say? Well, I'm glad you asked. The type of ileostomy I have is called a loop end ileostomy. So this means they basically fold the intestine in half and cut almost all the way through that fold. You end up with a big hole (which is what I know as my main stoma opening) and then a smaller hole. That smaller hole goes to a small piece of intestine (1 to 3 inches worth, depending) that is "downstream" from the stoma opening. Now, typically this smaller hole doesn't do much except for occasionally secreting some mucus. However, sometimes weirdness can happen like what I experienced if output gets into that small piece of downstream intestine. There are a couple of ways this can happen, but the one that likely applies here is that the blockage, and my massaging to get things moving again, may have forced some output past the stoma opening and into that section. As the intestine does it thing to force the contents out, it comes out of both sections. This is a good thing, unless you don't expect it to happen and it causes a seal loss and potentially loss of your mind!
When I pouched back up, I left a little extra space around there so if it continued to output it would go into the bag and not under the wafer. I will admit I was really nervous about how the seal would hold up for this morning's group training run. To give myself a little peace of mind, I bordered the whole wafer with my Hy-tape (waterproof medical tape). Happily, nothing bad happened. I'm thinking I will change out the appliance tomorrow so I can see how it's holding up and get an idea as to if that section is done doing it's thing. I guess it's more out of curiosity than anything, but I'll feel better if I get a look at it sooner rather than later. I'm also thinking it's time to quit putting off ordering those Sure Seals I've been thinking about. That seems much more secure than the tape I used today.
Saturday, June 4, 2011
Wednesday, June 1, 2011
Little Things Mean A Lot
I ate strawberries this week! I also ate raw veggies (green peppers, onions, cucumbers without the skin and seeds). I've graduated to being able to veggie up like normal on my favorite subs at Subway. These things thrill me like you wouldn't believe! Being able to add these extra fruits and vegetables back in is going to make staying on track with my weight loss efforts that much easier. I still have 17 pounds to go before my follow up appointment in September. I can do it, no problem!
On the running front: I ran 21 miles in May! Considering I didn't expect to be able to run at all until sometime in June, this is huge! Last Saturday I did three miles for the first time. The first two were out with the run/walk group and then I ran the last one solo on the track. I am solidly below my pace threshold for returning to my regular pace group from last season, so I'm going to join them this weekend. I am so excited, I can't wait to be 100% back. I can't remember the last time I felt this strong in my running. I'm loving it though, I can tell you that much!
I think I finally resolved one little nagging detail that has been eating away at me. I really wanted to be able to carry a pouch, wafer, and some wipes on long runs just in case things really go wrong and I get caught miles out and have to do an emergency change. I realize the odds of this are really low, but it's been bugging me that I'm not prepared for the possibility. Monday I bought a Fuel Belt and killed two birds with one stone. Firstly, I will now have four of the eight ounce bottles on my person so I'm carrying extra fluids. Secondly, I bought an additional large pouch for the belt that is the perfect size for an emergency changing kit. Now I can carry what I need and hope I never actually have to use it.
I sat and thought really hard about the possibility of a pouch malfunction while on a training run or running a race. Here's the conclusion I came to: shit happens. Yes, that's right. To everyone. Hopefully only at convenient times, but it doesn't always work that way. In the midst of thinking about this, I remembered the 2005 London Marathon when Paula Radcliffe had to decide between giving up the lead and copping a squat on the side of the course to take a quick poop. I'll tell you this much, she ended up winning. If untimely poop can happen to a world class athlete of Paula's caliber, it surely can happen to me. Though I am in no danger of winning a marathon anytime soon, I know I can handle and overcome any unwanted poop situation with the same tenacity as Paula. I am not going to let the fear of something that simple hold me back or slow me down. I'm just not. So I'll carry my supplies while hoping for the best and being prepared for the worst. And then I'll just forget about it and run!
On the running front: I ran 21 miles in May! Considering I didn't expect to be able to run at all until sometime in June, this is huge! Last Saturday I did three miles for the first time. The first two were out with the run/walk group and then I ran the last one solo on the track. I am solidly below my pace threshold for returning to my regular pace group from last season, so I'm going to join them this weekend. I am so excited, I can't wait to be 100% back. I can't remember the last time I felt this strong in my running. I'm loving it though, I can tell you that much!
I think I finally resolved one little nagging detail that has been eating away at me. I really wanted to be able to carry a pouch, wafer, and some wipes on long runs just in case things really go wrong and I get caught miles out and have to do an emergency change. I realize the odds of this are really low, but it's been bugging me that I'm not prepared for the possibility. Monday I bought a Fuel Belt and killed two birds with one stone. Firstly, I will now have four of the eight ounce bottles on my person so I'm carrying extra fluids. Secondly, I bought an additional large pouch for the belt that is the perfect size for an emergency changing kit. Now I can carry what I need and hope I never actually have to use it.
I sat and thought really hard about the possibility of a pouch malfunction while on a training run or running a race. Here's the conclusion I came to: shit happens. Yes, that's right. To everyone. Hopefully only at convenient times, but it doesn't always work that way. In the midst of thinking about this, I remembered the 2005 London Marathon when Paula Radcliffe had to decide between giving up the lead and copping a squat on the side of the course to take a quick poop. I'll tell you this much, she ended up winning. If untimely poop can happen to a world class athlete of Paula's caliber, it surely can happen to me. Though I am in no danger of winning a marathon anytime soon, I know I can handle and overcome any unwanted poop situation with the same tenacity as Paula. I am not going to let the fear of something that simple hold me back or slow me down. I'm just not. So I'll carry my supplies while hoping for the best and being prepared for the worst. And then I'll just forget about it and run!
Monday, May 23, 2011
It's Training Time!
Saturday was the first group run of my new season of half marathon training. When I was preparing for surgery back in March, I had no expectation of being able to run at this point in my recovery. I knew I would rejoin my training group, but I expected to spend a month or so walking and then gingerly moving up to the run/walk group and hopefully, just maybe, making it back to my running group. I am extremely happy to report that I can run two miles at a time close to my previous pace with no issues at all. I'm a bit tired after a workout, but UC did the same thing to me so I'm used to dealing with that. It is also getting better as the weeks pass which is not something I could look forward to with UC.
This week I did join the run/walk group for the first work out. My sister-in-law joined the training program and had plans to train with this group. I wanted to go with her for the first week to help her feel settled and comfortable. The pace coach was conducting intervals of 4 min/1 min run/walk and a few of the newer runners were really struggling and getting dropped by the group. I remember how frustrated I felt when I started last season and kept getting dropped---and I was an experienced runner and knew it would get better as the season progressed. I didn't want these brand new runners to have a negative experience that might keep them from coming back. I was wearing my Garmin, so I asked them if they wanted to do a 3/2 interval at a slightly slower pace. They agreed to give it a try and I was able to motivate them to get through the rest of the run at that interval and they felt good about what they'd accomplished at the end. A couple of them asked me if I would come back and pace them on that 3/2 interval again next week, and I agreed to do it. After that, I will move up to a running pace group, but right now I'm really enjoying getting these new runners started off in a way that will hopefully turn them into runners for life! I know how much sheer joy I've reaped from the sport and the community, so I'm honored to help others reach their goals in this area.
During and after the run I just felt amazingly good. I can't believe how great I feel physically. There is such a transformation that takes place when your body isn't battling disease every day. I still have to be careful to respect my temporarily diminished energy levels, but I feel so much better while doing the things I love. It's such a wonderful change. I wish I could have predicted all of this in the weeks leading up to surgery and I wouldn't have fretted quite so much. Oh well....perhaps by knowing and sharing it now I can help someone else in that position a little bit.
I also want to update on some new additions to my diet! I keep sharing this stuff because I was so dejected the first time I saw the do and don't lists for the soft diet that you are supposed to follow right after surgery. I just want people to know that you can successfully expand your diet as time passes and your situation stabilizes. Some new items in the past few weeks include: lettuce, tomato, strawberries, peeled apple, peeled and cooked zucchini, and cantaloupe. I also drink things like beer, wine, and pop without any problems. Oh, and use straws! :-) Just remember, as you are adding new items try one new thing at a time, only eat a small amount the first time, chew it a zillion times, and drink plenty of fluids with it. Also, be sure to enjoy!
This week I did join the run/walk group for the first work out. My sister-in-law joined the training program and had plans to train with this group. I wanted to go with her for the first week to help her feel settled and comfortable. The pace coach was conducting intervals of 4 min/1 min run/walk and a few of the newer runners were really struggling and getting dropped by the group. I remember how frustrated I felt when I started last season and kept getting dropped---and I was an experienced runner and knew it would get better as the season progressed. I didn't want these brand new runners to have a negative experience that might keep them from coming back. I was wearing my Garmin, so I asked them if they wanted to do a 3/2 interval at a slightly slower pace. They agreed to give it a try and I was able to motivate them to get through the rest of the run at that interval and they felt good about what they'd accomplished at the end. A couple of them asked me if I would come back and pace them on that 3/2 interval again next week, and I agreed to do it. After that, I will move up to a running pace group, but right now I'm really enjoying getting these new runners started off in a way that will hopefully turn them into runners for life! I know how much sheer joy I've reaped from the sport and the community, so I'm honored to help others reach their goals in this area.
During and after the run I just felt amazingly good. I can't believe how great I feel physically. There is such a transformation that takes place when your body isn't battling disease every day. I still have to be careful to respect my temporarily diminished energy levels, but I feel so much better while doing the things I love. It's such a wonderful change. I wish I could have predicted all of this in the weeks leading up to surgery and I wouldn't have fretted quite so much. Oh well....perhaps by knowing and sharing it now I can help someone else in that position a little bit.
I also want to update on some new additions to my diet! I keep sharing this stuff because I was so dejected the first time I saw the do and don't lists for the soft diet that you are supposed to follow right after surgery. I just want people to know that you can successfully expand your diet as time passes and your situation stabilizes. Some new items in the past few weeks include: lettuce, tomato, strawberries, peeled apple, peeled and cooked zucchini, and cantaloupe. I also drink things like beer, wine, and pop without any problems. Oh, and use straws! :-) Just remember, as you are adding new items try one new thing at a time, only eat a small amount the first time, chew it a zillion times, and drink plenty of fluids with it. Also, be sure to enjoy!
Tuesday, May 17, 2011
Ahhh....relaxation!
I finally went and got a massage last night. Prior to surgery, I pretty much got one a month so I was missing it badly. I had to wait for things to heal up enough to lay on my stomach so they could do a good back massage. During my last pregnancy I got massages where they used this big pillow so you could lay on your sides while they rub your back and shoulders and it just wasn't the same at all! Sunday my neck and shoulders were so stiff that I couldn't turn my head to the left without a good bit of pain. I did a little test run by laying down on my stomach on my bed and having my husband rub my lower back. No problems, so I decided to make the call and get an appointment.
While I was waiting for the therapist I kept debating whether or not I needed to tell her about the ostomy. I was a little worried Pedro would make some crazy noises while I was in there and I didn't want her to be alarmed. I finally decided that odds were good nothing would happen so I wasn't going to bring it up unless I had to. Everything was fine. The massage was excellent, Pedro stayed quiet, and laying on my stomach was no issue at all. I couldn't feel the appliance at all, even when she rubbed my lower back and pressed me into the table a bit. Hooray, one more first experience out of the way with a positive outcome!
Speaking of experiences with a positive outcome: I want to talk for a minute about intimacy. It comes up in the support forums from time to time and it's definitely on the top five list of the things us ostomy folk worry about. Without going into too much detail (I have some friends and family who read this and really *don't* want to know!), I can say it doesn't have to be something to worry about. I use the maternity style belly bands pretty much 24/7 to cover my pouch, help support it and keep it flat against me, and I just keep it on for those private times. It's a personal choice, but I feel more comfortable this way without having to worry about seeing the appliance or having it be in the way of anything. Since I'm all healed up, there really isn't anything to be concerned about and things are fairly normal aside from the random oddball noise from Pedro. So my advice is to do what makes you comfortable as far as deciding whether or not to use some sort of cover, communicate with your partner, and try to keep your sense of humor. Everything will be fine, promise.
While I was waiting for the therapist I kept debating whether or not I needed to tell her about the ostomy. I was a little worried Pedro would make some crazy noises while I was in there and I didn't want her to be alarmed. I finally decided that odds were good nothing would happen so I wasn't going to bring it up unless I had to. Everything was fine. The massage was excellent, Pedro stayed quiet, and laying on my stomach was no issue at all. I couldn't feel the appliance at all, even when she rubbed my lower back and pressed me into the table a bit. Hooray, one more first experience out of the way with a positive outcome!
Speaking of experiences with a positive outcome: I want to talk for a minute about intimacy. It comes up in the support forums from time to time and it's definitely on the top five list of the things us ostomy folk worry about. Without going into too much detail (I have some friends and family who read this and really *don't* want to know!), I can say it doesn't have to be something to worry about. I use the maternity style belly bands pretty much 24/7 to cover my pouch, help support it and keep it flat against me, and I just keep it on for those private times. It's a personal choice, but I feel more comfortable this way without having to worry about seeing the appliance or having it be in the way of anything. Since I'm all healed up, there really isn't anything to be concerned about and things are fairly normal aside from the random oddball noise from Pedro. So my advice is to do what makes you comfortable as far as deciding whether or not to use some sort of cover, communicate with your partner, and try to keep your sense of humor. Everything will be fine, promise.
Saturday, May 14, 2011
Busy, busy, busy...
I would call myself 99% back to normal at this point. I still get some fatigue if I really overdo things but I am feeling really good. I've been so busy living life I haven't had a chance to catch up on things here!
Monday I had the much awaited and anticipated post-surgery check up. Dr. Lavery was happy with my healing and said I was doing well. Two pieces of good news: 1) I only need to lose 20 more pounds to be eligible for my Step 2 surgery! 2) I got the green light to go running again.
I'm not sure which made me more giddy, really. I expected him to tell me I needed to lose more than that, so I am happy to have an attainable goal to work toward. I see him again in September, and I should be able to get to where I need to be by then. I did run twice this week--one mile the first time and a mile and a half the second time. I am soooo slow, but I'm doing it so I can't complain. No pain or issues from my guts or the incision, so I am thrilled. The bag is no big deal either. I am so excited to be able to resume something that means so much to me. I start a new cycle of half marathon training next Saturday and I can't wait! I will be training for the Columbus Half Marathon which takes place in mid-October. I would like to run the race and then have surgery the following week...just like last time!
One other point of progress to report: I am expanding my menu a bit beyond the soft diet. I've had lettuce, salsa, and cantaloupe and I'm slowly adding more things. This doesn't sound like a big deal, but there were a lot of restrictions on me for awhile so it's exciting to get some more variety back into my diet.
Today we walked in a Race for the Cure 5K. I was marveling at one point about how amazing I feel! I just have energy and feel so healthy. It is amazing to have that burden of disease and pain lifted off of my shoulders. I also can't believe how great I feel when I run now. I didn't realize how difficult it was to run while sick. I don't know how I did it for so long. I know I still have a lot to go through before this journey is over, but I have no regrets about making the choice to have surgery. My colectomy gave me my life back.
Monday I had the much awaited and anticipated post-surgery check up. Dr. Lavery was happy with my healing and said I was doing well. Two pieces of good news: 1) I only need to lose 20 more pounds to be eligible for my Step 2 surgery! 2) I got the green light to go running again.
I'm not sure which made me more giddy, really. I expected him to tell me I needed to lose more than that, so I am happy to have an attainable goal to work toward. I see him again in September, and I should be able to get to where I need to be by then. I did run twice this week--one mile the first time and a mile and a half the second time. I am soooo slow, but I'm doing it so I can't complain. No pain or issues from my guts or the incision, so I am thrilled. The bag is no big deal either. I am so excited to be able to resume something that means so much to me. I start a new cycle of half marathon training next Saturday and I can't wait! I will be training for the Columbus Half Marathon which takes place in mid-October. I would like to run the race and then have surgery the following week...just like last time!
One other point of progress to report: I am expanding my menu a bit beyond the soft diet. I've had lettuce, salsa, and cantaloupe and I'm slowly adding more things. This doesn't sound like a big deal, but there were a lot of restrictions on me for awhile so it's exciting to get some more variety back into my diet.
Today we walked in a Race for the Cure 5K. I was marveling at one point about how amazing I feel! I just have energy and feel so healthy. It is amazing to have that burden of disease and pain lifted off of my shoulders. I also can't believe how great I feel when I run now. I didn't realize how difficult it was to run while sick. I don't know how I did it for so long. I know I still have a lot to go through before this journey is over, but I have no regrets about making the choice to have surgery. My colectomy gave me my life back.
Thursday, May 5, 2011
To Share or Not to Share...
That is the eternal blogging question, isn't it? I have debated for more than a couple of days as to whether or not I should share the part of my experience I am about to write about. There are a couple of reasons why I hesitated. First of all, it freaked me out and I wasn't sure how I felt about it, let alone how to write about it. Secondly (and maybe more importantly) I didn't know if I wanted all of the parties who might stumble upon this to know about it. There are a few people (who shall remain nameless) out there who seem like they are just waiting for something to go even sort of wrong with this whole thing so that they can swoop in with their proclamations of, "I knew you shouldn't go through with this crazy surgery thing!" I was holding back out of not wanting to deal with those people or give fuel to their fire. Well, the reason I started this whole thing was as a record for myself and also as a tool for people who will go through this process after me (or maybe even are going through it now). I wanted to let people who are about to go down this road have a view into what they might be able to expect. I also wanted to let those who are already on this path know they are not alone out there. So the naysayers can just move along and the rest of you are welcome to stay here and read on.
I realized I had to write about this because it would now be item #1 on my list of "Things I Wish I Knew Before Surgery but Nobody Told Me!" Heck, I probably would put it in bold print with lots of asterisks and blinking lights all around it. Are you ready for this? When they take your colon out--if you still have your rectum--at some point stuff is probably going to come out of your butt. Even if that rectum is not actually attached to anything (which mine currently isn't). There are a few of reasons why/how this happens. The most straightforward one is that your rectal stump is still producing mucus. In a normally plumbed person, this helps stool move through the rectum and out of your body. For the colon-free, that function is no longer needed, but the tissues don't know that so the mucus factory keeps on doing its thing. At a certain point, enough will accumulate that it has to come out. Pretty straightforward.
A slightly more complex version of this comes into play if you, like me, have your colon removed due to UC. Almost two weeks ago I was minding my own business when I felt the urge to go to the bathroom the old fashioned way. This was rather puzzling as I know for a fact nothing is hooked up in there so there shouldn't have been anything processing in there (that I knew of at least!). Out of an abundance of caution, I decided to have a seat on my old friend the toilet and just see what was up. A few minutes later I was quite puzzled to have two small lumps and a few drops of blood pass. I pondered the weirdness of it for a few minutes (healthy people: trust me...UC'ers spend plenty of time gazing upon the contents of the toilet bowl...this is not as unusual as it sounds) and then went on about my business. A few days later the urge came again only this time there was more, and bigger, stuff coming out and a bit more blood. I was really starting to wonder what was going on so when the same thing happened again in a couple more days I freaked out and placed a call to my doctor. I had no idea what to think beyond the idea that the UC was flaring up in my rectum or something. I was freaking out thinking this was going to just keep getting worse until I was back where I was before surgery except now I had this ostomy bag hanging off of me and I'd been through six long weeks of recovery for nothing. The idea of this pissed me off beyond belief. It also got me to wondering if it meant I wouldn't be able to have a j-pouch after all. I was a mess! When I got the call back from my surgeon's nurse, she explained to me that the rectal stump was still involved with the colitis but it's completely normal to have this happening and I didn't need to worry unless I somehow started losing a lot of blood. It wasn't going to cause any problems for the future surgeries and I could relax. Whew! Relief. So why doesn't anyone mention this in the patient education materials???? You tell me. I am still trying to figure that out.
The third possibility for how this can happen occurs when your intestine has been hooked back up to the rectum, but you're still by-passing things with a loop ileostomy (this is where I'll be at after Step 2). The loop ileostomy has a second tiny opening that leads to the lower part of the small intestine where the pouch is located. Stool can actually seep into this tiny opening and down the small intestine, eventually needing to exit through the rectum.
So yes, these things can happen. No, you are not broken or going to die---though if you are bleeding a lot you should talk to your doctor right away. I really wish I would have known about this because it really threw me for a loop when it started happening repeatedly. It reminded me of my UC days in a bad way and that was pretty traumatic after going through all the rigors of surgery to get rid of that stupid disease. Happily, this seems to only be happening once every 2-3 days and there is no pain or urgency with it so I can deal with it until we move along in the process.
Before I wrap things up, I just want to give a shout out to a reader and online support group buddy of mine, elddiremsiht. She is working on kicking butt against some complications right now and is definitely in my thoughts, along with her wonderfully supportive mom. I hope you both are well and things are progressing as they should.
I realized I had to write about this because it would now be item #1 on my list of "Things I Wish I Knew Before Surgery but Nobody Told Me!" Heck, I probably would put it in bold print with lots of asterisks and blinking lights all around it. Are you ready for this? When they take your colon out--if you still have your rectum--at some point stuff is probably going to come out of your butt. Even if that rectum is not actually attached to anything (which mine currently isn't). There are a few of reasons why/how this happens. The most straightforward one is that your rectal stump is still producing mucus. In a normally plumbed person, this helps stool move through the rectum and out of your body. For the colon-free, that function is no longer needed, but the tissues don't know that so the mucus factory keeps on doing its thing. At a certain point, enough will accumulate that it has to come out. Pretty straightforward.
A slightly more complex version of this comes into play if you, like me, have your colon removed due to UC. Almost two weeks ago I was minding my own business when I felt the urge to go to the bathroom the old fashioned way. This was rather puzzling as I know for a fact nothing is hooked up in there so there shouldn't have been anything processing in there (that I knew of at least!). Out of an abundance of caution, I decided to have a seat on my old friend the toilet and just see what was up. A few minutes later I was quite puzzled to have two small lumps and a few drops of blood pass. I pondered the weirdness of it for a few minutes (healthy people: trust me...UC'ers spend plenty of time gazing upon the contents of the toilet bowl...this is not as unusual as it sounds) and then went on about my business. A few days later the urge came again only this time there was more, and bigger, stuff coming out and a bit more blood. I was really starting to wonder what was going on so when the same thing happened again in a couple more days I freaked out and placed a call to my doctor. I had no idea what to think beyond the idea that the UC was flaring up in my rectum or something. I was freaking out thinking this was going to just keep getting worse until I was back where I was before surgery except now I had this ostomy bag hanging off of me and I'd been through six long weeks of recovery for nothing. The idea of this pissed me off beyond belief. It also got me to wondering if it meant I wouldn't be able to have a j-pouch after all. I was a mess! When I got the call back from my surgeon's nurse, she explained to me that the rectal stump was still involved with the colitis but it's completely normal to have this happening and I didn't need to worry unless I somehow started losing a lot of blood. It wasn't going to cause any problems for the future surgeries and I could relax. Whew! Relief. So why doesn't anyone mention this in the patient education materials???? You tell me. I am still trying to figure that out.
The third possibility for how this can happen occurs when your intestine has been hooked back up to the rectum, but you're still by-passing things with a loop ileostomy (this is where I'll be at after Step 2). The loop ileostomy has a second tiny opening that leads to the lower part of the small intestine where the pouch is located. Stool can actually seep into this tiny opening and down the small intestine, eventually needing to exit through the rectum.
So yes, these things can happen. No, you are not broken or going to die---though if you are bleeding a lot you should talk to your doctor right away. I really wish I would have known about this because it really threw me for a loop when it started happening repeatedly. It reminded me of my UC days in a bad way and that was pretty traumatic after going through all the rigors of surgery to get rid of that stupid disease. Happily, this seems to only be happening once every 2-3 days and there is no pain or urgency with it so I can deal with it until we move along in the process.
Before I wrap things up, I just want to give a shout out to a reader and online support group buddy of mine, elddiremsiht. She is working on kicking butt against some complications right now and is definitely in my thoughts, along with her wonderfully supportive mom. I hope you both are well and things are progressing as they should.
Monday, May 2, 2011
Little By Little
A great thing happened today. I managed to sneak in the teeniest tiniest bit of jogging. I was on the treadmill and planned to walk for 30 minutes. I have my walking speed up to 3.7 now (I can remember when 3.0 seemed really tough!). I decided to walk for 4:45 and then "run" for 0:15 and keep switching it out that way. I ended up with 6 rounds of 15 second jogs. Felt great, no issues at all. I will not push beyond this until I see the doctor again on the 9th, but it felt good just to do a little and break a sweat. I should mention that if you are fresh out of surgery and reading this, don't take it as meaning it's ok for you to get out there and start running if you haven't been cleared yet! I feel fine, but that doesn't mean it's ok for me to be doing it either. I feel comfortable with the minimal risk but I don't want anyone else hurting themselves if it turns out I'm stupid on this one!
So when I changed my pouch again on Saturday, the skin looked so much better than what it did last time. I was a little weirded out because part of the stoma had this purple look to it. I think maybe the 1 1/8" cut I've been doing is a little too small and the stoma is getting pinched or squeezed a bit. The tough thing about stomas is they don't have pain nerve endings so you can be injuring it without even realizing it. I didn't come up with the flange cut size being the possible culprit until after I'd completed my pouch change, so hopefully all is still good. I will change again tonight or tomorrow morning and I think I will draw the 1 1/8" and 1 1/4" and cut in between them. I know 1 1/4" was just a little big, but apparently the next size is too small. It's always something, right? I think I would like to send away for some samples of mouldable flanges to try them out. I guess you just roll it back to the right size or something. I haven't really checked them out much, I just know there is no need to cut and you somehow stretch or roll it to fit. Sounds interesting anyway. I think I also want to get a sample of Sure Seals. They are these plastic film type adhesive things that cover the wafer and make it waterproof. Then I wouldn't have to worry about using the blow dryer on my wafer after each shower. They also do a great job of holding things in if you have a tiny leak.
So when I changed my pouch again on Saturday, the skin looked so much better than what it did last time. I was a little weirded out because part of the stoma had this purple look to it. I think maybe the 1 1/8" cut I've been doing is a little too small and the stoma is getting pinched or squeezed a bit. The tough thing about stomas is they don't have pain nerve endings so you can be injuring it without even realizing it. I didn't come up with the flange cut size being the possible culprit until after I'd completed my pouch change, so hopefully all is still good. I will change again tonight or tomorrow morning and I think I will draw the 1 1/8" and 1 1/4" and cut in between them. I know 1 1/4" was just a little big, but apparently the next size is too small. It's always something, right? I think I would like to send away for some samples of mouldable flanges to try them out. I guess you just roll it back to the right size or something. I haven't really checked them out much, I just know there is no need to cut and you somehow stretch or roll it to fit. Sounds interesting anyway. I think I also want to get a sample of Sure Seals. They are these plastic film type adhesive things that cover the wafer and make it waterproof. Then I wouldn't have to worry about using the blow dryer on my wafer after each shower. They also do a great job of holding things in if you have a tiny leak.
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