Newbie w/ Crohn's Colitis Choosing Permanent Ileostomy over Biologicals. Am I Crazy?

I need all the help and input I can get.  I have been here for almost 2 solid days reading the posts on your experiences, decisions, appliance choices, powders, pastes, Tic Tacs, etc.   Very, very informative and I am so glad I will have a place to come with questions as they pop up.

My story is this.   In my first colonoscopy 5 years ago, my sigmoid colon looked like a scraped knee and was first dx'd as UC.  The following year my GI, at that time, re-read the biopsy and said, ''Oh, I guess I missed this, you have granulatomous tissue and that means you have Crohn's''.  I was put on Sulfasalazine and Imuran.

FF 4 years.  Last April, a colonoscopy could not be completed with my new GI due to a stricture in that same area.  Scope also showed a stricture in the rectum which my GI stretched.   Barium enema showed a large stricture several inches long and the inside opening only as big around as 1/2 of a pencil.

June 2010 I had 10 inches of my large intestine removed with resection.  Got along beautifully and surgeon said the area around the stricture looked fine.   I was to see my GI for another colonoscopy so he could see the rest of my colon to be sure that was the only bad section.   That was finally done the last week of December and we were both completely taken off guard.

Other parts of my colon are a mass of ulcers and scar tissue with very active Crohn's evidence.  There is even possibly dysplasia in my cecum, but he was a little iffy on the pathologist report on that one.   He said he went about 8 inches into my small intestine and it is perfectly clear.

GI says only options are either surgery with removal of colon, rectum and anus with permanent ileostomy or try Remicade.  I think he would really like me to try Remicade, but says he will support my decision 100%.

I am 95% sure that I am going to ''just do it'' and here is my reasoning.

1.  I am almost 57 years old - If I were in my 20's or 30's with a whole lifetime ahead, maybe.  GI says his oldest patient on Remicade is in their 40's.

2.  I am also Type 2 Diabetic w/Neuropathy for at least the last 12 years.

3.  My dad died at 54 of Amyloidosis and most likely also had Multiple Myeloma.

4.  The horrid expense of Remicade and I know my insurance won't pay all of it.

5.  Remicade with it's black box warning scares the beegeebers out of me.  I cannot imagine getting sick or even dying from the treatment when I honestly do not feel that bad right now.  Sure, I have many bathroom runs daily, nightsweats and joint issues, but I am blessed that I don't have pain with all that damage in my colon.

6.  Every single day of my life I have to wear & change pads due to several ''surprises'' daily.  With the stricture in my rectum and the periodic stretching of that stricture, I do not believe Remicade or any med will keep that from happening and this may be my biggest deciding factor.   Emptying a bag seems like it would be easier than what I deal with on a daily basis.

7.  I would never have to worry about any more 2-day preps or colonoscopies or Colon cancer ever again.

8.  There would only be a 20% chance with it being Crohn's Colitis that it would show up somewhere else.  80% of those with CC who have their colons removed, do not have it return.  That sounds like pretty good odds to me and with developing it later in life, I think that might be even better.

Ok, it is your turn to tell me what you think.  I can take it, so don't hold back.  Tell me if you think I am crazy for not giving the biologics a chance.  I have read some of your comments about the only regret in having a permanent ileostomy is not having it done sooner.

Thank you, CJ

      I had ulcerative proctitis for twelve years.  There were a few years here and there that I did enjoy remission, but from March of 08 through the time I had my surgery on June 28th, 2010, I was in a constant flare and had become prednisone dependent.  Due to my extensive use of prednisone, I have full blown osteoporosis.  While on prednisone, I suffered with uncontrolled high blood pressure and Type 2 Diabetes.  My live was spiraling downward.  I could no longer make long term plans for trips.  The port a pot was my constant companion...one in almost evey room of my house, plus in the living room of our RV...ugh.

      I ran the gamut of meds, in addition to Prednisone and Colazal (ten years on that), I was on 6 MP for seven years, taken off it to start Remicade.  The Remicade failed after my third infusion and I tried Humira for three months...nada.  My GI doctor would not refer me to a colorectal surgeon so I sought one out on the internet.  My GI doctor still wanted to try MORE meds.  Forget it!  I was 63 yrs old at the time and completely fed up.  We live in south Jersey but I did not want to have my surgery in any local hospital...too many horror stories.   The colorectal surgeon I decided on was Dr. Fry, head of colorectal surgery at University of Pa in Philly.  He also trained at the Cleveland Clinic.  Sounded good to me!  I had my total colectomy with end ileostomy on June 28th.  It was not a walk in the park, but I am soooo much better.  I still have some "issues" but I am off all meds except for only 25 mgm of Toprol for blood pressure.  Before my surgery, I had to take three different blood pressure meds.  I no longer have to take any med for high blood glusose as it returned to normal after I got off that prednisone.  We are able to make plans....no port a pots all over the house.

     Find the best colorectal surgeon you are able to locate in your area.  The best of luck to you.  God bless.

I loved Remicade while it worked...but I only had 3 infusions for the antibodies to take over:(

I had a similar problem with my colon/rectum (fistulas, too) but I also had small bowel involvement when I was diagnosed. I had a temporary loop ileo for about 8 years and recently (wow, it'll be 3 years in a few days...wow) I had a proctocolectomy. I know there is always a chance of problems...but I 'knock on wood' a lot...because my quality of life is better.

Best decision I EVER MADE, for me, because like 80's Chick said it is a very personal decision.

#7 also went through my mind when I made the decision!!!

Welcome to the forum, glad you are here!

My story sounds similar to LittleSisSmurf's in many ways. Since having my ileostomy done almost 2 years ago now my life has been so much better than it was living with the pain and running to the bathroom more than 20 times a day with crohns/colitis, and I too developed severe joint pain once I was taken off all meds after my surgery, then I was diagnosed with RA and am now on methotrexate and humira injections almost every drug was tried on me before we went down the road of surgery but I became so sick it was surgery or I wasn't going to make it. I have had crohns/colitis for 23 years and am the happiest I've been with this surgery. Only you can make the decision if this is for you and it seems to me you have done your research, I have had other issues since my surgery and suffered with adhesions so had to have another surgery and still have adhesion problems but its still a better life than I had, take care and keep us posted, Good luck
Doreen

Hi! Thanks for sharing your experience. I am a 26yr old female and last june had my entire colon removed. I feared this initially because of "the dreaded bag" but realized ITS NOT BAD AT ALL! I dealt with blood transfusions, iron infusions, worries about "accidents" body aches, scopes f every kind possible until enough was enough. I made the decision to live with a bag rather than die slowly with my crohn's. I was given the same odds 20% etc. And I am so very happy I made the decision to go ahead with the surgery. I knew that I had so many years ahead of me but they would have been fewer and more miserable ones hadn't I got the surgery! My recommendation.... DO IT if you think it will ease you from the disease controlling your life. I have my life back, my old personality back, and the fear in my eyes of not making it to the bathroom, or one more scope is gone :)

I asked this same question last September when I was in the hospital with a severe flare up of Ulcerative Colitis. I was withering away and no longer responding to massive doses of Prednisone when my docs gave me two choices: Remicade or surgery. I could not try Imuran because it took too long to take affect and I did not have that much time (not that I liked the listed side effects of that med either). After reading up on Remicade, I did not want to take it due to the risks and decided I really wanted the surgery. Not to mention the costs (even with insurance) and having to go in EVERY 8 WEEKS for the rest of my life. That seemed more daunting to me than the surgery. The team of GI doctors were shocked. They could not believe that a 38-year-old would want the surgery over medication and said that my choice was very unusual. Still, they were supportive and gave me a referral to a top CR surgeon. However, I was so sick, weak and on massive doses of steroids at that point that they really didn't want me to get the surgery right then as they thought it would be more risky. So, I decided to get three doses of Remicade in an attempt to end my flare and get stronger for surgery. The first dose of Remicade worked like a charm. Within 5 days, my flare had ended and I was out of the hospital. Unfortunately, the day I got home, I had a delayed reaction to the Remicade. I developed excruciating joint pain and could not walk. It hurt so bad I rolled around on the floor in tears and no pain meds would relieve it. Though my doctors tried to tell me joint pain was a normal side effect, I knew something weird was going on and that I would never be able to tolerate the medicine. After a week the pain got even worse, so I canceled my last two infusions. It took about six weeks for the pain to subside, but it did eventually go away as the Remicade left my system.

In the mean time, I met with the surgeon (who has been the most amazing doctor I have ever had) and decided on a permanent ileostomy. After hearing about the options, I decided that I did not want to try a j-pouch. I am a park ranger who leads a lot of two-hour hikes for visitors and was afraid of the urgency issues that sometimes accompany that surgery. Rock climbing is also a big passion of mine and, again, urgency would be a hard issue to deal with up on a rock face. Changing out a pouch on a two-piece ostomy system and packing out the old one at opportune locations on a long climb is much more doable.

Every day I prayed that my flare wouldn't return without Remicade, as I weaned down to more lower levels of Prednisone in preparation for surgery. Finally the scheduled date arrived. I remember thinking I would have trouble sleeping the night before, but I slept tight and peacefully. I was actually excited for my ileostomy... I never wanted to be that sick with UC again. Everything with the ileostomy portion of the surgery went great, and I left the hospital after 5 days.

However, since then, I have had big issues with my incision not healing which has been a pretty painful ordeal. Two weeks after the initial surgery it popped open through the muscle layer and I had to have it re-closed. It was assumed that, even though I had lowered down to 30 mg by the time of surgery, Prednisone was causing my tissues to not heal correctly. Things looked to be on track, but in December the incision opened up at the surface again. We packed it with gauze and it seemed to be healing well. Then at Christmas time, the wound started tunneling under the skin and two weeks ago I had to go back to surgery to have it opened again. Turns out I was having a reaction to the suture material my surgeon had used in the muscle layer of my abdominal incision. My surgeon cleaned it up, and now I am on a wound vac hoping that it will finally heal.


Still, i am so happy with the surgery overall, and have absolutely no regrets. I did go through a period of mild depression in December, but that dissipated as I started to adjust to the changes and began to realize how much better I felt without the UC. Everything with my stoma, eating/output, appliances etc. has been going extremely smoothly. I can't wait for my incision to heal so that I can start figuring out how to do all my favorite activities, with my ileostomy. I am totally up for the challenge. I know it will be a while before I have the strength to climb, snowboard and backpack again, but I WILL get there.

Though my docs were 90% sure that I had UC, there was some concern about Crohn's as well. All my scopes had pointed to UC, as well as a genetic test, (and my final pathology report once my colon was removed), but they still couldn't be absolutely certain. I was told that it was okay to have the permanent ileostomy even if it was Crohn's. If I had had more signs of Crohn's, they would have advised against a J-pouch, which I didn't want anyway. I have a friend who has Crohn's and had a permanent ileostomy ten years ago. Her Crohn's has not returned.

P.S.- My dad has Multiple Myeloma too.

     Yes....it is sooooo much better than the disease.  My GI doctor would not refer me to a colorectal surgeon...he said he didn't KNOW one..yeah right.  I had to take matters into my own hand.  Suebear was telling me for months I was going to need surgery, but sometimes you put yourself in a state of denial.

     I agree with you about Remicade and Humira.  I think they work for a small percentage of people with UC.

     Having a bag is really no big deal.  I don't even know it is there.  I empty about four times a day.  My problem is reminding myself to drink more fluid.  I can eat everything!!!!!  No porta pots around the house....oh life is grand!

Again, I am so grateful that I found this support group.   Unless someone has been through this, there is little understanding of what we go through on a daily basis.  I am blessed that my pain has been minimal.

I am the one that keeps saying that I know this is just a matter of time and the end result will be the same...permanent ileostomy.   I have felt that for quite some time and if I had known back in June when I had my re-section, I would have most likely requested it be done then.  I mentioned that to my CR surgeon and he said you don't want to do that until you have to.

My GI even after telling me that I had all those oozing ulcers and scar tissue and most likely had dysplasia in my cecum never once told me that he thought surgery was my best option.   I really think he wanted me to agree to try Remicade and keep checking on the cecum with subsequent colonoscopies.  

Thanks again everyone for your input and experiences.  I know I have not suffered nearly as much as most of you, but I have accepted that is has to be and am ready to move on with it.