Crohnie considering an ileostomy

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lynn024
Regular Member


Date Joined Dec 2008
Total Posts : 26
   Posted 9/7/2010 11:52 AM (GMT -6)   
Hi, I've had Crohns for 11 years, and my right colon was removed 3 years ago. Since then I've been on Remicade, then Humira. Remicade worked really well for a while, then stopped being effective. Humira may have helped a little, but not significantly. I've also been on and off the SCD diet for 8 years. I also developed rectal ulcers, skin tags, and a rectovaginal fistula in the last 3 years.

My GI doctor is strongly recommending having my colon and rectum removed, with an ileostomy. Over the last few weeks I've developed severe pains low across the intestines, when I eat, before BMs, or just randomly, which makes me think I may have a stricture. My BMs are usually 4-5 times a day, mushy, sometimes urgent, sometimes a little blood.

Over the last two months I've had two abscesses drained, one on each labia. One of them turned into a fistula and isn't healed yet. I see a colo-rectal surgeon in 2 days to see exactly where the fistula tracts are, and figure out what treatment is best for me. I don't really want a seton. I don't want to live with a fistula. I'd rather get rid of it, so I'm hoping an advancement flap will work for me, if I choose to focus on treating the fistulas.

I hope to know more after seeing the surgeon in a couple days, but I'm weighing the options of treating the fistulas, or just going for the ileostomy so I can start to feel normal again -- although I'm not even sure what that feels like! I'm able to function, but I'm very tired, I've missed a lot of work, and I'm not able to do a lot of social activities or even chores around the house.

I've been reading other posts on this forum, and most people seem happy with their ostomies, but I wanted to share my story. Anyone's comments or experiences are appreciated. Thank you!

lynn024
44 yo female, Crohns 11 yrs, UC 10 yrs previous, Anemic (hemoglobin usually around 7-8)
Right hemicolectomy Feb 07
RV fistula and fistula exiting labia
Humira, 6MP on hold until abscess heals, following SCD diet

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/7/2010 12:42 PM (GMT -6)   
i didnt have crohns, i HAD uc (my fav sentence, lol) but i have a perm ileo, and regardless of any of the small annoyances that come wtih it, and they are very small, my life is like 10thousand times better!
i dont think that surgery always cures the fistulas, but i know it helps with alot of the other stuff for crohns.
Good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/7/2010 3:47 PM (GMT -6)   
I have Crohn's and lived with setons (yes, plural sad ) for many years before my proctocolectomy. I did Remicade (Humira wasn't available then) and dealt with the rectal disease for many years before all meds stopped doing any good!

I did have a loop ileo for more than 8 years and it did help BUT it didn't heal my fistulas. My disease was so bad that my C/R Surgeon tried twice, for the advancement flap surgery, but couldn't complete the surgery because there was too much disease. That was a big disappointment but as the patient we have to try everything...don't we?!

I LOVE my ostomy...and my permanent one is so much better since I don't have fistulas to deal with, too.

Ask your doc questions! But most importantly find out how many surgeries they've done and what their success rate is...there will always be complications of some kind...but the more procedures they have done the better off you'll be!

Good luck with your journey and keep us posted on what you decide!

Post Edited (OHIO76) : 9/8/2010 7:07:02 AM (GMT-6)


LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 9/7/2010 10:39 PM (GMT -6)   
I had a hard few years with my crohns disease until I finally opted for the ileostomy. I cant say if it would be right for anyone else BUT oooohhh mmyyyy goddd!!  I love mine!!
               
I dont have to take imodium 4 hrs before I leave the house, I dont have to preplan my trips to include washroom locations, and I dont have to worry about not making it, or falling asleep on the tiolet when Im soo sick and cant get off the tiolet.  Its peice of mind (no more anxiety attacks) and im saving sooo much time in my day by not having to live around my disease. Im not a young girl anymore so Im not trying to "fit the mold" 
    
I have had my ostomy for 3 months and I dont even notice it there anymore. However, being a cronic illness...the ostomy has only solved some of my problems and not all.  I also know that the people in my life have never made me feel uncomfortable or diffrent which has made this sooo much easier for me. Either way....I still LOVE IT!  I wish you all the best and a long healthier life...    Celine
37 yr old woman diagnosed with crohn's colitis 1998.(symptom free for 10 yrs.) The last two yrs. Ive been on prednisone, Imuran, remicade, and humira. Had surgery and got permanent ileostomy may 28th 2010.Son also diagnosed with ulceritive colitus..

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/8/2010 7:47 AM (GMT -6)   
I have crohns/colitis and had my permanent ileostomy and proctocolectomy done about 18months ago and as pointed out by others apart from the small annoyances living with a pouch my life is a million times better than it was before this surgery. I too had a right hemi-colectomy done a few years ago but my crohns got worse and failed lots of treatments including remicade and humira as well, I became house bound as I would always lose control of my bowel and soil myself everyday. So life couldn't be better for me now. But its not for everyone, you do need to weigh it up as you are doing and make the decision based on what your surgeon thinks and what you want. Best of luck with whatever you decide to do, keep us posted and if you have any other questions we are all only to happy to help you out. take care

lynn024
Regular Member


Date Joined Dec 2008
Total Posts : 26
   Posted 9/8/2010 11:59 AM (GMT -6)   
Thank you all for your responses! I appreciate all the encouragement and positive thoughts. In one sense, I feel like having a proctocolectomy is "giving up," in my particular situation (please don't take that personally). But it also takes a lot of courage for each of us to face what needs to be done. From what I've read, some people have had to deal with a lot worse than I have.

I see my surgeon tomorrow, so after that I hope to have a lot more facts to help me make a decision.

Thanks again, and good health to everyone!

lynn024

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 9/8/2010 12:40 PM (GMT -6)   
lynn,
What exactly are we giving up? In my case, severe Crohn's whose mutliple surgeries resulted in strokes, on-going draining anal fistula's (13 years worth), soiling myself in the most inconvienient places, being house bound, medication.....Hm, if I had been aware that having my rectum removed and getting a colostomy would have saved me from years of all of that, i'd have done it when I was 20, not 32.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/8/2010 6:41 PM (GMT -6)   
I second Allie. I had mine done a few months ago at 28, and I wish I could have saved myself all the grief of living for 10 years with constant diarrhea and worry and pain. Even the (slight) inconveniences that come with an ostomy are TEN MILLION times better than living with all the large inconveniences of Crohn's.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/8/2010 10:06 PM (GMT -6)   
lynn, its not giving up! Its the ultimate form of winning! It's literally taking the colon out and to the curb! you are getting your life back, winning against the disease!
Please dont anyone who is thinkign of getting an ostomy ever think of it as giving up!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 9/8/2010 11:21 PM (GMT -6)   
Hey..we all fought the good fight. I just got tired of it. With the cronic ilness, Im never going to be completely healthy, so Im jsut making the best of a sh***y situation...pun intended...lol I do wish u all the best
37 yr old woman diagnosed with crohn's colitis 1998.(symptom free for 10 yrs.) The last two yrs. Ive been on prednisone, Imuran, remicade, and humira. Had surgery and got permanent ileostomy may 28th 2010.Son also diagnosed with ulceritive colitus..

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/9/2010 1:46 AM (GMT -6)   
     Lynn, I, like summerstorm, had ulcerative colitis, actually proctitis because my disease was confined to the rectum. 
     On June 28th I had a total colectomy with permanent ileostomy.  I had a few complications while in the hospital which were resolved.  I now have an infection in the anus.   Hopefully, because I am on a two week course of Cipro, this will be resolved without hospitalization sad
     I suffered with the colitis for twelve years and ran the gamut of meds.  For the last two years I had become prednisone dependent.  I am wondering if my present infection is related to my extended use of prednisone.
     My ileo is working like a dream....lol.  It's all this other bunk that is hindering me.

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 9/12/2010 10:27 PM (GMT -6)   
Just had my colon and rectum removed 3 months ago and feeling like a million bucks. Battled Crohns symptoms for too long and I guess you could say I gave up the fight too. It was a fight I was not gonna win until the total proctocolectomy. Now I'm a winner and feeling great. Hey my stoma is ugly and having a bag hanging off my body is not pretty either but I could care less because I am living life now and not doubled over in pain or pooping my pants all the time.

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 9/13/2010 9:48 PM (GMT -6)   
like most of all the other replies my illeo gave me back my freedom. I demanded that my surgeon do it. No way I was putting up with the meds (pred) and no control. I did have some rough patches too but I would do it again tomorrow, no question.
Everyone has to make that decision, I do not feel like I gave up..I feel like I took control.
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