Community Forum

Hey everyone! I am new to this group, having just learned about it during my first hospital stay. I was diagnosed with fairly mild UC back in early March, but it quickly worsened.

The first attempt to quell any inflammation was Prednisone, which improved things but never got them near normal and my symptoms started to return as soon as we tapered the steroids. I was also on Pentasa and two enemas (hydrocortisone and mesalamine), all of which were pretty ineffective. During this last bad flare, we tried Prednisone again to no avail and that is when I went to the ER and I've been in the hospital since. It's been a week, and I am not responding to IV steroids either. A second colonoscopy revealed greater inflammation in a larger area of my colon than before. My first dose of Remicade was on Wednesday, and we repeat it again tomorrow. If I don't begin to respond within 48 hours they want to talk about removing my colon and doing a two part surgery where I eventually have a j-pouch. 

I would love to hear about experiences both with Remicade and with surgery--or anything else that's worked! I am 27, and the idea of having my colon taken out does worry me to some degree because it's just so...permanent. But to be honest, the side effects and risks of Remicade are almost just as worrisome, and now that I am understanding the havoc UC can really wreak on a life I just want to go the route that gets me closest to long-term health and quality of life. 

Any thoughts/experiences (both positive and negative) would be appreciated as I move forward with these decisions! Thank you!

Reply posted for KalynRoseAnne.

Thank you all so much for the feedback! I was unresponsive to two rounds of Remicade while hospitalized and so we went ahead with surgery (1 of 2) and I had my colon removed and now have an ileostomy til 2nd surgery. My recovery was pretty rough but I am finally home and feeling SO much better. I received a lot of encouragement from your replies, so thank you! So nice to hear of people living happily post-surgery. And Charbs--so, so sorry to hear about the Crohn's. I really hope that you and your doctor are able to find something that works for you! 

Reply posted for KalynRoseAnne.

Hi, I had my colon removed in March. Aside from some diarrhea, 1 to 4 times per day, every thing seems to be working. I have UC and had strictures that were life threatening. I had a stoma for 8 weeks which was annoying. The second surgery for reconnecting was worse pain wise, make sure the doc is not stingy with pain meds. I was nervous too, but you can live without a colon. Good luck!

Reply posted for KalynRoseAnne.

I had UC and nothing worked for me but prednisone.  I was passing so much blood that eventually I was getting a couple of pints transfused every month.  I eventually had the surgery and a colostomy for three months while the j pouch healed.  That worked pretty well for a while, but them I developed Crohn's disease so I'm sort of back where I started. now on Remicade but it does nothing for me.  Keeping asking my doctor for a new  biologic.  Good luck.  It's a struggle.

Reply posted for KalynRoseAnne.

I was diagnosed with pan-ulcerative colitis in 2012 and never went into remission up until I had surgery at the end of February of this year. I was on every treatment possible out there and did clinical trials as well.
I can say that surgery is ROUGH! I am a 3 step surgery process and I am 1 month out from surgery #2, I will have the final surgery sometime in the fall where my J-Pouch will be connected and I will get rid of the ileostomy/bag.
I can honestly say that surgery is hard, and I am not at the end now but I think it is absolutely worth it. I don't need to be on medications anymore and living with the bag is not as scary or terrible as I thought it was going to be. I am looking forward to getting rid of the bag, of course, but I can say having the bag is better than having to live with a constantly flared colon from UC, and I hear having the J-Pouch is even better than the bag.
I was on Remicade for a year and a half and it never put me in full remission. I was constantly on and off steroids while on Remicade. I always had some sort of UC symptom, whether it be urgency, bloody bm's, or weight loss, I never was quite right. After being on the remicade for a year I started to get really bad joint issues, the arthritis got to the point of being unbearable and my GI doctor ran a test to see if I built up the anti-bodies to the remicade, and turns out I did. Once I stopped it my arthritis went away. 
I think that these drugs are hard on our bodies and for some they work long term but I was never one of those people.
I am happy with my decision to have surgery, even though it has been harder than I ever could have prepared myself for, I think it is worth it. I never have to worry about colon cancer, which my doctor said I was at high risk of with having the disease constantly active in my colon for almost 5 years. Long term effects of these medications can be scary and I am glad to have said good riddance to them and to have gotten my diseased colon out of me!