30 Year old Male with Colitis and Celiac Disease. The SCD Diet is not working for me. I’m on day 19 and I’m frustrated. Pooped 22 times yesterday!
My Current State of Colitis:
I am in the middle of the worst flare so far of my ulcerative colitis lifetime. It’s only the second flare I’ve had with ulcerative colitis so I think I have one of the cases of UC where it comes on fast and strong and before you know it your colon must be removed, at-least that’s how I’m feeling, especially after reading Curtis’ story last night on this website. I can see that happening to me. I started the SCD diet 19 days ago, no starter diet, just jumped into it hoping to get some relief. I know 19 days is not long enough, but it seems I’ve gotten worse while I’m trying to eat healthier, so maybe it’s just not the right time to start it, perhaps I should be in remission first, which I’ve lost the directions on how to get to remission because I can’t seem to find that place. I did have one day where I only pooped 5 times which was like a vacation, but a short lived vacation.
I’ve been on 40 mg of prednisone for probably 2 and a half months now (it’s getting so long I can’t remember). I just switched from Lialda to Asacol on 10/5/11 because Lialda was not doing anything, neither is the prednisone. Can you be immune to prednisone after a while? I don’t see how my condition could get any worse if I just stopped taking all these damn drugs, but I’m sure it could so I’m staying put.
Yesterday was a bad day. My wife is out of town traveling for work and she will be in and out the next 4 weeks in a row. So I’m trying to play Mr mom to my 2 year old son and work the traditional 9-5 office job at a big corporation. I sat on the pot 22 times yesterday (8 while at work). I think it was actually 24, but I didn’t have my poop log on me for every one of them. I’ve been keeping track of how many times and what I’ve been eating since 10/1/11. I call it my food/poop log. I wanted to go to the hospital last night and probably would have had my wife been there, but since I don’t have any family I can call up close by to watch my son I realized I had to stay there and care for him.
I found out I have been approved by my insurance for Remicade treatment and that I just need to get a Hep B test and something else before I can start Remicade. I’ve heard such good and bad things about this drug, but I’m willing to try it as a last attempt in saving my colon. I think if Remicade doesn’t work, colon removal is probably my only option which is really scary. I can’t live like this much longer. I can deal with the 10-15 range of poops a day, but once it’s in the 20’s and 30’s, take my colon, you can have it.
So I’ve made 10 trips to the toilet already today and the day isn’t even half over. I called in sick and told my boss whats up. I laid it all out there because I don’t like hiding behind anything, tell it like it is and say that’s why I won’t be coming in today, maybe not for a while. I said f*** it and baked a couple of potatoes and made a big ass pot of brown rice and have had two root beers already. These foods aren’t SCD legal, but I don’t really care at this point. If I’m shitting 22 times a day, might as well make it 30 and at-least have some carbs to put back on some weight. I think I am going to have to modify my diet, not stick strictly to the SCD for the time being because it really hasn’t worked for me and I think I was giving it a valid attempt. I may have eaten too many fruits, but I can’t pinpoint any food that cause me to poop a lot because every thing does.
Anyway, bottom line, I’m scared as hell. Feel like I’m coming to rock bottom here with UC. None of these drugs, diets, supplements seem to do me any good at this point. Feel like a bad dad because I can’t really play with my son like he wants me to. He’s always saying “daddy tummy hurts,” and he’s always seeing me on the toilet. I don’t want that image burned in his head of his dad. Finding it hard to succeed at work with this disease, although I think people respect the fact that I tell them whats happening to me. Most people wouldn’t want their co-workers to know they shit so much. I don’t care, I want them to know so they understand why I am in the bathroom so much, why I eat such weird foods, why I’m in such a bad mood (roid rage). Anyway, would love to hear from some UCers that didn’t have much success with SCD either. I’m hoping I’m just too far into the flare for a diet to help me get out o f it. I’ve heard some of you say it takes months, so let me know what you think. Thanks for reading.
Ulcerative Colitis Medications:
40 mg Prednisone
Asacol 3 pills 3X a day
Hydrocortisone rectal enemas once at night (if I can keep it in, usually just squirts out)
Submitted by “Blake” in the Colitis Venting Area