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

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CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 1/28/2011 11:48 PM (GMT -6)   
 
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
 
 
 
 

LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 1/29/2011 2:50 AM (GMT -6)   
Hi there, I had my surgery done last May and Im in heaven!! 
It reeally is soo much better than running to the bathroom. I love mine and dont regret my decision at all. Im 38 and the happiest ive been about my crohns colitus..in a loong time.  I have had other issues...unexpectedly though.
My bladder is still not functioning properly and i have had to deal with that. (nerve damage from surgery) I have also had severe arthritis since I was taken off all the medications after surgery. (back on humira now)  I dont care...I dont have worry about washroom locations, or if I am going to make it or if I have the spare clothing...if I dont..I dont have to take tons of meds to survive the day...I dont have to suffer the pain of hemmroids...or cramps..or..or..or
   It took me a few months to get used to the bag but now I forget it is there.
I empty it 3-4 times daily and maybe once a night. I heard alot of things before I got mine but alot of it has been diffrent for me. I know some ppl get up several times a night to empty, and several ppl empty thier bags alot..but not me..   It is still better than wearing a pad and the fear and anxiety from lack of control...  Anyway... I wish u all the luck and a healthier happier rest of ur life...good luck

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/29/2011 8:28 AM (GMT -6)   
      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.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 1/29/2011 3:53 PM (GMT -6)   
I had Crohn's Colitis for 10 years. I tried every drug imaginable (including Remicade). I finally had surgery March of last year, and I am thankful every day.

I can't tell you what to do, but I can tell you this: Remicade IS expensive. It worked for me for almost a year, and then I became immune to it, I guess. It was great while it worked, but then, like eveyrthing else I try, it stopped working.

It is a personal decision, but I really had no choice and had no quality of life. I am so, so, SO thankful for this. When I hear people say that they have accidents and have to wear pads and all that, I honestly can't believe they wouldn't have surgery. A leak, in my opinion, is WAY less embarrassing than an accident, and at least you're not worrying about finding a bathroom every second. I cna't believe I functioned as long as I did with diarrhea every day. No one should have to live like that.


That's just my opinion...if you have any other questions, let me know. I hope you feel better soon somehow, either through drugs or surgery. Hugs!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/29/2011 7:42 PM (GMT -6)   
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!
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 1/29/2011 8:11 PM (GMT -6)   
Remicade worked for a year then i became immune to it.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/29/2011 8:51 PM (GMT -6)   
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

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 1/29/2011 9:56 PM (GMT -6)   
It was 6 weeks ago yesterday that my husband had his surgery. Like yourself he got to the point he had had enough and it was time. The constant pain and quality of life was just not good with all the frequency and urgency. Remicade - 4 infusions - no success which was the last resort.

We were hoping for a potential j-pouch procedure making the ileostomy temporary for 3-4 months. For many good reasons it was not meant to be and we knew the potential risks beforehand so it wasn't earth shattering when we knew it couldn't be done.

We did a ton of research beforehand so we knew what the pouch system was all about so it wouldn't be such a shock and were so prepared which was a big help.

Definitely make sure you check out the colo rectal surgeon and that you have a good one.

My husband is 64 and except for the UC at the time was in good health and not frail at all so the surgery recovery process went very well for him. He was operated on 12/17th and released on 12/24th. We stayed nearby and came home on the 27th as it is a 3 hr drive away. I was concerned about the drive home but he did well as I made sure I had some small pillows with me to help him maneuver in the car.

Adjusting to the bag has been easy in comparison to what he was putting up with before the surgery. He spends so much less time in the bathroom now than he has for the past 5 years. There is a bit of a learning curve but the ostomy nurses were great in the hospital and we had 11 visits with home nurses to help us "master" the technique. We are about to experiment with some different supplies although we have had good luck so far with the Hollister New Image 2 piece system.

He had his post op appt with the surgeon and hospital ostomy nurse last Monday 5wks 3 days after the operation and all is well at the moment. So unless we need an appt for one reason or another we are on our own.

Honestly if he knew then what he knows now he probably would have considered surgery sooner. Truthfully though he was not ready and needed to try everything available and suffer I guess and reach the point in time that he became ready.

If and when you do decide be sure when you are in the hospital that you insist on additional pain medication if you are uncomfortable. He had an epidural and was pleased with that but supplemental medication was needed to keep him comfortable.

We live in an over 55 community in Florida and the weather has gotten really nice so we have been able to take some great long walks. Today we walked at least 2 1/2 - 3 miles in beautiful sunny 70 degrees. 6 weeks ago he couldn't even walk anywhere out in the open due to constantly needing to know how close a rest room would be. He and I now have our lives back and are grateful.

This decision was the right one for him/us. I realize it is not as easy a decision for many others for many reasons. But when you do decide this is what you want to do, I honestly don't think you'll regret it either.

Best of Luck!
64 yr old male --suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

rumple
New Member


Date Joined Jan 2011
Total Posts : 12
   Posted 1/30/2011 12:25 PM (GMT -6)   
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 :)

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 1/30/2011 2:43 PM (GMT -6)   
 
Thank you, everyone !!!   I am feeling lots better about my decision and you all have helped me so much.
 
I have been reading up on dysplasia and I am a little concerned that my GI did not drive that point home with me a little more by guiding me towards surgery.   I still think he would like me to try Remicade first.   He did say because of the dysplasia that he wanted to do another colonoscopy in 3 months...YIPPEEEE !!!
 
My plan is to schedule surgery in 5 months, so maybe he won't still need to do that colonoscopy.   My family is planning a much needed trip to Disney World beginning on Memorial Day and I would like to put it off until after that.    Yeah, I will have to be loaded down with my pads, but I think that would be better than doing the surgery before and dealing with post-surgery and adjusting to the bag while on vacation.
 
You guys ROCK ♥

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 1/30/2011 4:09 PM (GMT -6)   
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.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 1/30/2011 4:39 PM (GMT -6)   
Hi All,

The thought of Remicade or Humira scares the day lights out of me. I had non Hodgkin's lymphoma in 2002 so I am not a candidate for it, since it can cause Lymphoma!

My CR surgeon also suggested the J-pouch to me, but because I am 54 I really don't want to go through all those surgeries. A few months ago I attended an ostomy support group in Trumbull CT, where I live, and I met a young women who had the J-pouch and then she got gangrene, and ended up with the ileo anyway, well my decision was made. When I do have surgery it will be an ileo, I will deal with it, just like everyone else.

Got to be better then the disease!

Post Edited (Salamore) : 1/30/2011 3:19:46 PM (GMT-7)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/30/2011 4:49 PM (GMT -6)   
     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!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 1/30/2011 9:25 PM (GMT -6)   
A little more info having read some of the posts above. Hubby had been off prednisone for 3 years as of the surgery date. (He had been on it way too long and way too many times, became steroid dependant and osteopenia from it and affected his mood and personality so when he successfully tapered off it, it was NEVER AGAIN after that). I assume his healing went very well due to that fact. So if prednisone can be stopped "safely" and some time in between the surgery date that will probably be a help with the healing process.

Last June his local GI was very honest with him and in her professional opinion it wasn't a question of "if" but "when" this could turn into a cancer situation and then not only surgery would be needed but chemo and radiation to complicate things. Since every single thing failed and his pain management medications were not working that well it was time to consider colonoscopies twice a year! The quality of life, urgency and frequency were such that it made life not fun at all which you all can relate to. That resonated with him and that frank discussion is what sealed the deal. Kind of came quick as he was not leaning towards surgery at that time but he finally decided right there and then to do it. With the exception of this UC condition he was healthy and had no other issues and to wait any longer seemed to be too much of a gamble when he weighed all the pros and cons.

So it was time to get back in touch with his Mayo Clinic team, his GI and CR surgeon with a decision they were waiting on since hubby was just not ready every time he met with them and had colonoscopies and results that made surgery more and more recommended.

I'll be honest that the original decision and plan and hope was for the j-pouch ultimately. His surgeon only had his surgery booked for that day and had the operating room for the entire day and went into the surgery with that plan in mind. 7 1/2 hr very complicated surgery and it was not meant to be. We knew it was a distinct possibility that he could end up with a permanent ileostomy which is what happened. After a little bit of disappointment it was time to accept it and move forward which is what we did and didn't waste time thinking about something that was not meant to be for many valid reasons.

Just thought I would give some more details. It is a decision he is very pleased with as am I.
64 yr old male --suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 1/30/2011 10:07 PM (GMT -6)   
 
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.
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