Bowel resection vs. Colostomy?

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Julie1014
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Date Joined Oct 2005
Total Posts : 1250
   Posted 9/8/2017 7:15 PM (GMT -6)   
It has been a long time since I have posted here, and I was always given such good advice. smile I have had Crohn's for 11 years. I have been on Remicade, and over the years I have developed a significant stricture which involves my sigmoid colon and most of my descending colon. It is mostly scar tissue now, causing difficulty eating, bloating, difficulty passing gas and stool. I stopped the Remicade and tried Entyvio, which unfortunately made me quite ill. I am back on Remicade and waiting for approval for Cimzia. I have been on steroids for 6 weeks with only minor improvement. The stricture is greatly impacting my quality of life. I have yet to have surgery of any kind.

I met with my GI yesterday who is sending me for a surgical consult. As per my GI, I could choose to have a resection of the sigmoid/descending colon, or opt for a colostomy. I was wondering if anyone could shed some light on the pros/cons of either surgery. I am okay with the possibility of a colostomy. What I am looking for is the best possible outcome that would last the longest, without multiple surgeries.

My GI feels that I would be at a greater risk of developing scar tissue at the surgical site of a resection, which would possibly require more surgeries, and he also states that my bowel function may not return to normal. He feels that if I got a colostomy, it would last much longer and have less "side effects."

Any suggestions/experiences would be so appreciated. Thank you so much in advance for your time!

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9921
   Posted 9/8/2017 8:25 PM (GMT -6)   
Basically, yeah, your GI is right. Your best chances of a long-term successful outcome is a colostomy - if you're happy with a colostomy, I'd go with that. I had an ileostomy for a couple of years, then was reconnected to whatever was left of my colon (very little: the rectum and a part of the sigmoid). The Crohn's came back at the surgical site almost immediately. My bowel function is definitely not normal, in fact it's rubbish.

In retrospect it was probably a terrible decision to have a reversal. I honestly didn't think the Crohn's would come back as quickly as it did. It's not even mild either, unlike when I was first diagnosed. I think if you have a resection, you would be at real risk of the Crohn's moving downwards into your rectum. I'm assuming there is no Crohn's above your descending colon? If your entire colon is affected then you should really have a total colectomy, but it doesn't sound like it from your post.

PS: Ask your surgeon what he intends to do with your butt. If you are gonna have a permanent colostomy, then I think it would be better to get everything removed and your butt sewn up. Not only can Crohn's affect a defunct rectum/colon, another condition called diversion colitis can as well. In a nutshell the colon becomes inflamed in the absence of any stool passing through it - it doesn't like being deprived of 'food'! Symptoms are passing mucus and, if it's bad, blood. You will also suffer from tenesmus, a need to go to the toilet when there is nothing there. I had diversion colitis (or Crohn's, but supposedly the biopsies were clear for Crohn's), and while it isn't nearly as bad as what I'm going through now, it was still something I could have done without.

Also, in the long-term there is the risk of cancer in an unused rectum or colon. It not being used doesn't make the cancer risk go away.

Post Edited (NiceCupOfTea) : 9/8/2017 8:34:24 PM (GMT-6)


clo2014
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Date Joined Feb 2015
Total Posts : 675
   Posted 9/8/2017 10:42 PM (GMT -6)   
Julie1014,

Tough decisions....with lots of research. I am sorry you are going thru this. I can honestly say it does get better.

I agree with NCOT....A colostomy is what you make of it. For me it was a life saver...cause I did not want to live the rest of my life the way I had been. I needed some type of relief.

I too was on Remicade, developed a soft tissue structure in my sigmoid, had it "stretched" three times by my GI, it quickly "fell" back in, and ended up with an end colostomy. I also have a RVF that needs repair. My GI has stated to have the repair and then try to resection or hook me back up. My CRS stated to leave it alone. He does not recommend a resection.... Not right now. He would prefer to fix the fistula only if we have to and leave the colostomy in permanently. He stated approximately 90 percent of his Crohns resection have strictures and scar tissue develop but not all of them have it in a severe form. The patients that had a stoma and then were reconnected....95% wish they hadn't reconnected. And once reconnected many CRS do not feel comfortable disconnecting and establishing another aroma for at least 12 months. Yikes!!

So I have an end colostomy that may become permanent. (I was diagnosed with sudden onset aggressive fistulizing Crohns Dec 2014...so my experience will probably be different from yours in some ways. I am a 57 year old female)

I have had my colostomy for one year. I have not had my rectum removed yet. Having a colostomy has improved the quality of my life. Now when my extreme fatigue hits me...I can sleep in the bed instead of sitting up on the toilet. Lol.... It is so much better than I thought it would be. The surgery recovery was a long difficult progress for me...my skin separated from my stoma so there was additional pain and healing time. It took me about 8 weeks to feel comfortable changing my bag ...and another 6 to 8 months to figure out which appliances did or didn't work for me. (But I had and continue to have those issues that very few have)

Bottom line...I wish I had done it sooner and I really really do not even want to think about a resection. When my GI brings it up I look at my CRS and ask why I would want to chance going back to that horrible time with those awful uncontrollable symptoms. At least now I have some semblance of control. Previously I was going 15 to 20 times a day with half of them ending up as accidents. Now I don't have to worry about that part. I still have to empty my bag frequently throughout the day and night but at least now I don't have accidents like before. I still have fistula, eye, skin, memory and joint issues along with extreme fatigue and heat intolerance....but that one thing I don't have to worry about changed my life for the better. I can eat so many things now...and I can ride the 2 hours to my doctors office with only one stop and sometimes no stops.

My friends with mild to severe Crohns who have colostomies are so much happier. They are able to do more than they could before. There are about 15 of us. 4 or 5 of the younger ladies did have reversals....and now 2 of them are begging their CRS to give them their stomas back and the other 3 are scheduled for second resections because of scare tissue developing....And they are all on Remicade and usually methotrexate. They have had bloating and pain.... The rest of us are looking on and none of us are willing to risk it since over 33% of just our group are having issues. BTW...most of us go to different doctors and yet these issues have occurred with all different CRS and GIs. So like NCOT said....be careful.

Best of luck to you. Please keep us informed...and if you have any questions please just ask.

Clo

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1250
   Posted 9/9/2017 4:32 AM (GMT -6)   
NiceCupOfTea and Clo2014, I cannot thank you enough for the wealth of information that you both gave me. Thank you so much for taking the time to write such honest, detailed responses. You have both helped me tremendously. I hope to meet with the surgeon for a consult in a month. I will let you know what his recommendations are, and, ultimately what my decision will be. I was leaning towards a colostomy before I even read your responses. Thank you again so much!

Julie

cupcakespinkgal
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Date Joined Jun 2010
Total Posts : 1529
   Posted 9/9/2017 8:19 AM (GMT -6)   
NCOT and CLO both gave good info.

I had a colon resection with temp ostomy, now I have a permanent ileostomy.

My resection was not for strictures, I had severe inflammation from active Crohns that started to perforate the colon at the splenic flexure. At first they were going to do a colectomy, but then decided I was to ill for that surgery, I ended up having a resection with a temporary ostomy while the resection healed.

After my temp ostomy was closed my bowel function was not the same, things moved through me pretty quick, but my disease also returned in a matter of weeks so I never got a chance to see what my bowel would do without disease. When the disease came back right at and below the resection site I wanted the ostomy surgery. My GI wanted to try more meds, but I wasn't up for it. I was a little traumatized to have had surgery and then already be sick again. And worse than I was prior to my first surgery.

If your main priorities are quality of life and minimizing additional surgeries, than the colostomy in most situations is the better option.

I'm 18 months with a permanent ostomy and my quality of life is the best it has been 19 years. Having a bag on my tummy forever isn't ideal but it has become a minor inconvenience for what I have gained.

Good luck with your appointment!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1250
   Posted 9/9/2017 11:23 AM (GMT -6)   
Cupcakespinkgal, thank you so much for sharing your story with me! It sounds like you have been through a lot, and I am so happy to hear that your quality of life is so good. I will keep you updated as my surgical consultation approaches. Thank you!

Julie
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