I'm getting better, so why do I feel worse?

Hi all,

Thanks for taking the time...

:o)

Just a bit of backgound before I ask my question:

Had perfectly working GI tact and pooper for 38 years. Then, during my second pregnancy, I was prescribed long term antibiotics to prevent a uterine infection that put my pregnancy at risk. I was on Clindamycin daily for around 10 weeks straight; the diarrhea/blood/mucus started slowly in September and I had a flex sig done at 22 weeks pregnant. Diagnosed with proctitis and prescribed Rowasa enemas and Asacol.

I had about 6-10 movements a day from October to January. This was actually manageable since I was on bed rest the whole time and had taken a medical leave from work. My son came early at 35 weeks/6 days on January 5th.

Had a c-section. Spent 5 days in the hospital recovering. Day 1 and 2 after the c-section were blissful (in regards to UC). The epidural after-effects and pain meds stopped me up and I had no bowel movements! But then things started to get worse. Maybe as a response to the antibiotics I got during the c-section?

Came home with the baby (we have a 2.5 year old, too), and my UC got completely out of control. From January to February I lost about 25 pounds, was having 15-25 movements a day, mostly blood and mucus. The urgency was beyond anything I had ever experienced...I had about 6 seconds from the realization that I was going to poop again before it actually happened. I was having accidents even in my own home, where there are 3 bathrooms! I sometimes couldn't get there!

I started wearing Depends and started to NEVER go ANYWHERE. I was terrified to even go to the store. I was losing weight (granted, a lot of it was baby weight) like crazy. In early February, when I lost 8 pounds in a week, my GI put me in the hospital. I was there for 5 days getting solumedrol, fluids, cat scan, colonoscopy, etc.

Did stool samples a number of times to rule out c-diff and other things. The colonoscopy showed severe pancolitis, which was pretty disappointing considering that I started out *simply* with proctitis. Didn't know how quickly it can worsen!

So, when I got out of the hospital I was on 40mg pred/daily (still tapering but down to 7.5), and started Remicade and Imuran, plus my Apriso capsules and Rowasa enemas.

So, things have been gradually improving lately. I think the Imuran is finally kicking in. Instead of having 20 crampy, bloody movements a day, I am now having 2-5 movements a day, and they are all formed. In fact, some are *too* formed, if you know what I mean...

My question is this: When I was really at the worse part of my flare (February/March of this year) and going 20 times a day, my tummy and colon felt just fine *between* bouts of diarrhea. I would get 10-15 seconds of cramping, cramping, CRAMPING, and then *go* and I felt immediately better until the next one.

But now, even with going only a few times a day, and not experiencing ANY blood, mucus, or diarrhea, I find that I feel so much worse physically than before. Perhaps side effects of the many pills I'm taking each day. I know my joint pain I can attribute to lovely Prednisone. Also my uber-sensitive teeth, my hair loss, my insomnia...you guys know...

But the worse is the pain. about a month ago I started to feel so much pain in my lower abdominal area, plus an ENORMOUS amount of bloating. The pain waxes and wanes throughout the day; when I poop or pass gas I feel marginally better. But the bloating/pain stays with me all day, every day. So even tho my diarrhea is soooo much better and I have a much higher quality of life (can go to the store, go to yoga, meet friends for tea or lunch, etc), I just generally feel ill/icky all the time. Day and night.

If I was having diarrhea or blood or mucus, I would assume the pain was coming from inflammation. But I don't have any of those things. If anything, I feel a bit constipated.

My weight as an adult woman has gone up and down over the years, but I exercise and eat pretty decently and have always had a flat stomach. Now my stomach is so bloated, even when I first get up in the morning. I look about 4 months pregnant all the time now. The bloating/pain has only been with me for about a month now, and started right around the time I started to have much better diarrhea control/formed stools and more bathroom predictability. What could be the connection?

I mentioned all of this to my GI doc on last week when I saw her. She thought that it was the prednisone, and that once I'm off of it completely I'll start to feel better. A little skeptical about that answer, tho, which is why I'm checking with my UC homies...what do you guys think?

Gah! Sorry for the book...thanks for reading!

Ta and take care,
Lisa

Hi Lisa....you're now back to "proctitis"...the symptoms do match it, and now you need to make sure you continue the rectal meds. Are you tapering the pred?

I see you're using many products that could cause excessive gas...maybe make changes as to when you're taking them.

Are you still on the kefir, VSL, l-glutamine. florastor and imodium?

How are you eating?

I agree with having your blood tested, especially for any of the b vitamins, D and iron.

q

Hi - Apriso gave me some of those symptoms after long term use of oral 5ASA's. When I stopped using it and the Imuran had kicked in I felt way better. I did not realize it was the Apriso until I stopped it.

Just a thought...