Overwhelmed

Hello & Welcome!

I think many of us can understand the feeling of being overwhelmed. It's not easy having UC, especially when it's difficult to treat. Mine has been pretty difficult to treat and I think I've finally stabilized. Things seem like they will never improve sometimes but remember, they will. Remicade works wonders for many. My GI has told me that it was the route to go but I continued with the treatment path I am following and things seem to be working out. There are many people here on Remicade who are doing extremely well. I didn't want to go for infusions, that's the man reason I decided to try 6mp first. Things will be ok. It's just very hard to accept that you have this illness. For the longest time I thought I had a bacteria but I tried a bunch of antibiotics and none helped. I still wonder if there is an antibiotic out there that might help me. Have you have biopsies and stool cultures? Have you tried mesalamine and rectal medication? I hope you're feeling better quickly.

I know what you are going through, i was diagnosed just a little over four years ago and it was one of the most difficult times of my life. I was only 17 and could not imagine continually having to deal with this disease. I was lucky though and after treatment with prednisone i managed to go into remission and stay for the most part completely normal for the past four years. Im currently going through a major flare up and this time had to go onto remicade which i just started last week. The truth is that you will adjust and learn to live with it, im still learning that myself and its difficult, but not impossible. Know that there are always people around for support and many different treatment options, it may take time to find one that will work for you, but it will happen, stay strong and positive and you will get through this :)

Thank you guys for responding so quickly :) My basic story is that initially, my doctor thought that I had an infection, so I went through all the stool testing and nothing came back positive, so I started on Asacol (3200 mg/day). Some of the symptoms improved, but then I ended up crashing and having to go the ER due to severe dehydration due to the crazy amount of diarrhea I was having. At that point, I was started on Flagyl and Cipro for a short course and low dose prednisone (20 mg/day). The prednisone really brought me back to life--I had basically been bedridden for the three weeks before that, but within a day, I was able to start getting up and about and up. I felt encouraged because I was feeling a little bit stronger every day and while I wasn't totally back to "normal" in terms of not having diarrhea, things definitely had improved. I had blood work done for the Prometheus IBD test and while some counts were abnormal, I did not come up positive for either CD or UC, which I took as a good sign even though I know the test can give a fair percentage of false negatives.

Then came this week--I had my first colonoscopy. Between the prep and the actual procedure itself, I feel like I took steps back because the bleeding and diarrhea started again. Then my doctor basically told me that despite the fact that I was feeling much better, my colon looked like "World War III", which was not exactly what I wanted to hear when I was feeling very weak as it was. Due to how my colon looked, I started 6MP and the steroids were bumped up to 40 mg/day--I am on day 4 of this new treatment regimen.

I think, in part, I'm so scared because it seems like all of this is happening too fast. My doctor was conservative for what seemed like for so long and now I've been told if I'm not responding to the increased steroids by next week, then Remicade will probably come up in discussion. I'm trying not to be negative, but all I seem to hear about are the side effects and sometimes I just don't know how much more my body can take.

Despite all this, I'm trying to keep a sense of humor about this as best I can--it just struck me as funny that never before this would I have thought that I would feel so comfortable discussing my bathroom habits and my colon in a public forum :)

Welcome to the UC forum! You can always find empathy here. It's pretty common to feel overwhelmed when you're 1st diagnosed with UC. My initial colonoscopy made a big impression on the doctor, who said my left colon looked "like raw hamburger"! I had to go on Cortenemas nightly for about 3 months + a low-residue diet to bring it under control. Early on there is so much information that we need to know, about possible diet changes, side effects of meds, etc.-- that's also hard to confront when you're already worn out from running to the john. Have you looked at the Website ccfa.org -- Crohns & Colitis Foundation of America? They provide solid info on the many aspects of dealing with UC. Another good online source of info is the Salix Pharmaceuticals Patient Newsletter (Archive), which started in 2003. The top IBD gastroenterologists in the U.S. have contributed articles to it since then-- advising on diet, meds, complications, lifestyle, travel, etc. The more reliable info you get, the more empowered you will feel about managing your own symptoms. Hang in there! Let us know how you're doing as time/energy permit. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)