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Hi everyone,

I'm new to this website.  I was diagnosed with UC in 2004.  I have tried numerous medications -- prednisone, rowasa enemas, steroid enemas, asacol, 6-mp, Remicade -- with little success.  I have been hospitalized numerous times for anemia, the latest was in Feb.  I was so anemic I had to receive three units of blood.  The only drug that works for me is Prednisone, and we all know that one ain't much fun.  So, my questions are:  has anyone had any success with Humira after Remicade didn't work?  Have any of you ever tried "not using" your colon, either by having an ostomy installed temporarily to keep food from entering the colon, or through IV nutrition?  For me, I pass a lot of blood clots.  Because the blood is clotting, it makes me think my colon is trying to heal, but the food passing through my colon is simply picking the scabs.  I know, that's gross, and I apologize if that is too graphic. 

I'm at the verge of having surgery and, to be honest, I'm scared.  I want to make sure I've tried everything before I make such a permanent decision.  Please help!

 Reply posted for pms.

PMS....did you get abscesses?

 Reply posted for JCHall.

My daughter is to the point where she is considering surgery as well.  She was diagnosed with UC in Oct 2007.  After a year of ups and downs with medications she is steroid dependant.  Her 3rd GI has recently put her on Cellcept (she is allergic to Imuran).  She's also on Asacol, prednisone, and iron.  As of 2 weeks ago she was feeling wonderful again.  But then started to flare-up.  We thought stress had a lot to do with this because she just started college.  But blood test and stool samples found out that she has an infection.  (I think they tested for C Diff) and is now on Flagyl for that.  GI said that she needs to start thinking about Remicade.  She does not want to start that and feels very uncomfortable thinking about it.  She is talking a lot about surgery.  Is she also at the end of her treatment options and ready to have the surgery?  She is 18 yrs old and just wants to be able to live a "normal" life without drugs and having to run to the bathroom.  She's just beginning college too.  She's a very determined girl and really thinks things through.  Ultimately it is her decision.  I just hope she is not "jumping" into a quick fix and she needs to give the medicine treatments a real chance to work.  We see the GI this week Thursday so hopefully she will get some clear answers.

 Reply posted for beadgrrl.

Hi,they are pros and cons to every decision made, at the time I htought it was right but 23 yrs later I cry all day and night. I have crohns disease and nothing would control it , for me too remicade and humira were not avail just lots of prednisone, I went to any state and every specalist I thought could help. I have had the best surgeons and nurses possible and still all I can tell you is surgery is the last resort, after you have tried and extinguisehed all possibliities.who cares about taking 20 pills when your just wondering just how the heck you going to keep a bag on, or being in a crowded place and realizing you just "sprung a leak". There are so many possible things on the horizion in medicine these days. Surgery is not always the answer like this post I answered,we have gone thru several blockages and I alone have had 6 surgeries becasue of it and now running out of bowel. So it is NEVER a open/shut case. Lukily for me Remicade taken every 6 weeks is helping but I still deal with the ostomy and meds arent cheap. THE ONE THING I WOULD SAY IS FIND A SURGEON AND GI YOU TRUST BUT ALSO REMEMBER THEY ARE NOT A GOD.

Should I have surgery?Dont know where you live but I had my large colon removed in 2001 by a wonderful surgeon who was honored by the CCFA. J** B** at M*** Hospital in NYC.

Should I have surgery?JC,

I tried Remicade several times and it didnt work at all.  One of the GI specialists I spoke with said that Humira would not work, if the Remicade didnt.  He works for University of ***and is up on all the latest research. 

 

Lori

 Reply posted for JCHall.

You should try the Humira before you have surgery.  It might buy you a few years until something better comes along.  I've been on all the meds you mentioned at one point or another.  Remicade worked for a while then I had a bad reaction to it.  So when I was at teh end of my rope and thought I had to have surgery 4 years ago, I began a clinical trial.  Turns out it was for Humira.    And it worked..  It kept me healthy for a couple years.  Then like everything else, I think my body built up a resistance to it and I flared again.  I finally went back on it once it became FDA approved, but it still didn't stop my symptoms.  I finally had to have a colostomy.  Even a year after my surgery, I found myself back on Humira.  I'm not certain what its doing for me these days, but it did keep my away from the surgeon for a few years.  Good luck.

 Reply posted for JCHall.

I am recovering from a small bowel resection and had fistulas.  About 2 feet of my small bowel was removed.  It was done laproscopic and I was home in 7 days.  I actually felt better the first few days than I do now.  I don't know if I'm doing too  much (trying not to).

My surgery was July 31st and I still take vicodin in the am and pm. My stools have changed from brown to green and I feel like I have to go more often.  I never had classic symtoms of diareah.but was told it may be looser now because of the ilium (flap?)that was removed too?  I see my Dr in a couple of weeks for a follow up and hope to get better every day.  My energy level is better but pain keeps me from doing too much.  That's probably a good thing.  Can't wait to be somewhat normal again.  This has been a battle with medications for a year and 1/2.  Hope this surgery is the answer for a few years at least. I'm not sure of what food I can eat. My tomatoes are ripe and have been having them on toast mmmmm

This is my 1st post and I am interested in everyone's stories which are so varied.  Hope I can be of help to someone.

Should I have surgery?If your gastroenterologist cant recommend a few different surgeons, doing the work on your own can be difficult (especially since you have to have a referral to go to a surgeon). I live in Boise, ID...So I dont know how far youre willing to travel for surgery purposes.

 Reply posted for JCHall.

Ugh, I'm going through the same thing. My doctor seems to think it's for the best, but it's so hard to feel that way! This isn't really an answer to your question, but I just wanted to let you know I understand what you're going through! Surgery is just so invasive... I'd be more willing to take 20 pills a day than it... but, on the other hand, if it means I won't have to take pills or Remicade or something, then isn't it worth it? Such a dilemma.

Good luck figuring it out.
- Missy

 Reply posted for JessicaMaple.

hi Jessica im speaking to you on behalf of my son who is  just starting remicade, the doctor has suggested the posability of surgery.We are at a loss lookig for a surgeon,being you were impressed with your surgeon do you have any suggestions for how to find a surgeon?  Much appreciated.  
                                                                            John

 Reply posted for JCHall.

I have met many people with UC (I have Crohn's) who, after having a colon resection, wish they had done it sooner. I would reach out to some of these people in your area.

 Reply posted for Sierra.

I had a resection last month and honestly, I would have done it sooner if I could have. I spent an entire year on prednisone, gained 80 pounds and lost a lot of my self confidence and self-esteem. If I could have just had surgery to fix the problem instead of trying every flipping medication on the market first, I would have.

 Reply posted for JCHall.

I have Crohn's, and I had a proctocolectomy and permanent ileostomy.  I'd had numerous abscesses and fistulas, and none of the drugs I tried helped (this was 13 years ago, so there was no Remicade or Humira).  It was just a matter of time before I would have had a perforated bowel.  I have not regretted having surgery, but it was really my last resort.  I have had problems with blockages, but that is mostly related to narrowing of my bowel from Crohn's relapses in the foot or so of bowel behind my ostomy.  I'm having a really bad flare right now and will be trying Remicade soon.

 Reply posted for JCHall.

Hi JCHall,

Everyone is different, but I tend to think of surgery as a last resort. Surgery is risky, and it doesnt always solve the problem. I had surgery because I had been in the hospital for 6 weeks and still couldnt take any food by mouth--not even liquids--and almost all my other options had been exhausted (back in 1986, there were fewer options than there are today).

I ended up with a temporary illeostomy... that was a surprise!  I had the ostomy for 8 years. Its not fun, but it is something that you can deal with and live with. Most of my symptoms were kept under control, and I lived a pretty normal life... I just had to poop in a bag! Still, be aware that a "temporary" ostomy may be with you a long time depending on how your colon heals (and your insurance situation--ostomy reversals arent cheap).

Also, if your colon is not the main problem, then an ostomy isnt going to help. I still had flare-ups and had to watch my diet even closer when I had the ostomy.

Hope this helps.

 Reply posted for JCHall.

maybe you could try have a liquid diet for a while . you do seem really bad off . But i totally would want to try everything else as well before i ever thought of surgery . I wish i could be more helpful about the meds n all but i havent really tried much bc i havent had medical insurance until this last yr  so really i use to just go to the ER if i felt too bad.

Good luck to you!!