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.

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.

Sunday, June 3, 2012


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.