Community Forum

Howdy-

I've been running UC for nearly 2 years now.  I've done the max asacol, lialda, prednisone, remicade, and have never quite pushed into remission before flaring – read - prednisone dependant.  The GI is now suggesting Humera, but I'm not sure I'm in the market anymore. 

Firstly, any experience with transitioning from Remicade to Humera would be appreciated.  Any shared thoughts as to "when is enough enough?"  I want to live again, and at 35, living with infusions/injections/prednisone crazyness/flares/insurance/medical management isn't terribly appealing when I could simply trade a colon away.  But this is scary business, as we all know….

Moreover, I'm interested in the group’s experiences with the laparoscopic removal of the colon.  I understand the benefits of this procedure over the "open" procedure, and am heavily leaning this way.  I also understand that this procedure isn't common yet, and encourage those in a similar situation to investigate the laparoscopic option.  The fact it doesn’t seem widely discussed on this forum is concerning for us all. It requires greater surgical time and skill, and old-guard surgeons simply don't want to learn new tricks.  Until there is demand in the marketplace (us), they will likely continue to perform in antiquated ways. 

I've interviewed one fellowship trained colorectal surgeon specializing in laparoscopy.  He is proposing 3 procedures:

1) Laparoscopically remove the colon and create the ileostomy. 

2) After 6 weeks, go back in an create the J pouch.  The 6 weeks allow for recovery, but also allow for the remicade and prednisone to wear off.  His feeling is that these drugs increase risks of infection and otherwise hinder the J pouch from "taking" the first time around.

3) After 6 weeks, undo the ileostomy

Would appreciate any and all thoughts and experiences as well as any references you may have in the Denver Colorado area.

Randy

 Reply posted for RTL331.

Hi Randy,

I read your question and am facing surgery as well.  My doctor recommends having my colon removed due to a section of it narrowing.  During my last colonoscopy, he wasn't able to get the scope through part of it because of the narrowing.  He said I could try meds to help the inflammation of it but feels 6 months down the road it could close completely and then I would have other problems.  If I have surgery, I will be disease free.  I would also need a surgeon in the Denver area.  Have you been able to find one who has done the colon removal laparoscopically?

Thanks,

Susan

 Reply posted for RTL331.

Hi there-

I just had part 1 of the three step surgery you described.  My surgery was a subtotal colectomy with a temporary ileostomy.  The surgery took a little longer than expected because I am still tapering off the prednisone and the surgeon wanted to be cautious.  Otherwise I had no issues once the surgery was complete.  I was drinking clear liquids by the next morning and up walking too.  The pain was managed with a pump that I could control.  I was eating a low residue diet by the third day and went home within 5 days of surgery.  The hardest part of the surgery has been adjusting to the ileostomy.  It takes time and patience to get used to this new way of life even if it is temporary.

I am waiting a few months before I continue with the next surgeries simply because I want to enjoy my young son and the upcoming holidays without worry and pain. 

Good luck to you- this is not an easy decision to be made.  I too have been on all the drugs out there since my diagnosis 10 years ago.  Surgery became the best solution for my toxic colon.  I felt and looked better within days.  I know for me it was the right decision.

 Reply posted for RTL331.

I was never on Remicade, but I was on Humira before my surgery, and was also having to rely on Prednisone to control flares.  For me, the Humira did absolutely NOTHING. I was in and out of the local hospital, with my local GI doctors... and ended up needing to travel a little farther, to a better known hospital, and that's where they suggested surgery. The local groups also had not noticed that I had perforated my intestine, and 3 abcessed areas had formed where it perforated... which actually helped me out... its better than perforating and bacteria spreading throughout my abdominal cavity... but still... a pretty bad thing to miss. The doctors at the better known hospital kind of frowned upon the long term prednisone use, and then through a forum on this site I saw a Johns Hopkins University seminar link, and when I watched it learned that they also really don't approve of the use of long term steroids. The local GI doctors that I saw also verbalized that using steroids long term wasn't a good option... but they also kept prescribing it time and time again. I probably spent 6-8months where as soon as I tapered down to 5 or 10mg of Prednisone my symptoms would come back worse and worse each time... and they'd start me on 40 or 60mg's and have me taper again. Going elsewhere for another opinion was the best decision I made. And second opinions never hurt. I was terrified to have surgery, but I met a good surgeon in a good hospital, and it has been the best thing that's happened since my Crohns was diagnosed.

 Reply posted for RTL331.

The laproscopic procedure has huge advantages to slicing your whole abdomen open! Recovery time is so much faster and easier. When my ileostomy is taken down, the only scar I will have is the scar where the ostomy was. My surgeon had discussed making an incision in my belly button, and was hoping to take out my right colon and reattatch the small and large intestine in one procedure, but after my colonoscopy, he instead made the incision where an ileostomy incision would be made so that in case the ileostomy was needed, that would be my only incision... and I ended up needing the ostomy, so I'm happy with his suggestion. It was honestly easier than dealing with my Crohn's.  The faster you get yourself up and walking, the faster you feel better.  I was feeling back to normal in a week or two, and I'm not so worried about the recovery time for the takedown, since its supposed to be even easier.  ANY procedure that requires a long incision through the abdomen takes about 4-6 weeks for recovery (or that's what I learned in nursing school anyway). It also helps that my surgeon was WONDERFUL, and seems to have had lots of experience with the procedure.  I'm extremely happy with the results of my laproscopic procedure.

 Reply posted for RTL331.

My brother had laparoscopic surgery in Tampa to remove the colon and create a jpouch in one go about 9 years ago.  He was expecting a permanent stoma but the surgeon decided in surgery that jpouch was an option.    He burst a duodenal ulcer 48 hours after surgery and needed an exploratory surgery to make sure that his connections hadn't failed.  Otherwise he has done exceptionally well.   Looking back, the three step process might have been better, or he could have still suffered the terrible ulcer in duodenum.

I have discussed with doctors for about 5 years whether I would be a candidate for some form of surgery.  I am now closer to a decision... acknowledging that at any part of the three step process they may stop and leave you with a stoma more long term or permanently.

Both of us have diagnosis of Indeterminate Crohn's. < difficult to pin down uc/cd - argument could be made either way, tertiary symptoms and biopsies/imaging conflict. >