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Life after colectomy

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Ostomies
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Jlang12
Regular Member
Joined : Sep 2016
Posts : 24
Posted 3/21/2019 6:10 PM (GMT -6)
Hello!

Quick background. I have crohns with a lot of perianal disease - fistulas and abscesses. Failed on multiple medications and the next step would be to have my colon removed and have an end ileostmony. I currently have a temporary loop ileostomy and have had it for 3 years.

I am most likely going to schedule a colectomy within the next year and would like to know what everyone’s opinion is for life after surgery..

Energy? Appetite? Any pain? Issues? Does your stomach feel different without a colon? Can you feel the rectal stump? Can you notice no colon excersizing or running?

Just thoughts of questions and would appreciate anyone’s insight.

Thanks!

Post Edited (Jlang12) : 3/21/2019 6:21:11 PM (GMT-6)

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pombear
Regular Member
Joined : Feb 2018
Posts : 82
Posted 3/22/2019 5:27 AM (GMT -6)
I had a colectomy 2017 was an emergency so maybe it will be different in a planned colectomy, but I have some pains from where they cut my muscles I think , its not that bad just if I move too fast like lean over far to my side sometimes it hurts a bit but have noticed its much less now then it was before , an I still have the rectal stump its got mild diversion colitis they said after a sigmoidoscopy, that is the only time I feel it is when its *flaring* but some days its not painful or tender or anything so cant feel it ,,,, I notice if I pick my son up the next day I have pains around stoma from doing it he is 6 so a bit heavy an I shouldnt be doing it I know it can cause hernia , I still dont have loads of energy but I never did have much anyway an my appetite is still good just the same so I dont think colectomy changed how I feel too much ,,also noticed I can hear inside my stomach more now the noises of digestion seem much louder then before,, but maybe its because the colon is no longer there to muffle the sound more I dont know lol

Post Edited (pombear) : 3/22/2019 5:38:35 AM (GMT-6)

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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 3/26/2019 5:12 PM (GMT -6)
I had a stoma for 2 and a half years. My strong recommendation would be to not keep the rectal stump if it's going to be a permanent stoma. You can't feel it as such, but you can pass mucus and blood and have just as bad urgency as with a colon. Also, long term it is a cancer risk. No more so than a regular colon is, but what's the point of having it just sitting there gathering dust?

Energy, appetite, etc. were the same for me once I had got over the surgery and a couple of hideous drug withdrawals (oxycodone, which left me with ruinously itchy skin for months, and prednisolone). I had more of a psychological problem with the stoma, but looking back I almost feel like I would take the stoma over what I have now: I was physically healthier, had no Crohn's or uveitis, etc. I never physically felt the lack of a colon.

As you've already had a loop ileo for 3 years you should adapt pretty quickly to an end ileo. For most people an end ileo is easier to manage than a loop one.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17773
Posted 3/27/2019 9:01 AM (GMT -6)
I have a jpouch and I do not have pain or issues. I try to be more careful about eating foods that can block me, but basically, that means chewing well. If you're already with a loop, it probably won't be drastically different, but you will no longer have the diseased parts there to flare up. For me, the end ileo was much easier to deal with vs the loop. The loop is faster transit and the output is thinner, which caused a lot of issues in my case. Other people say they have great luck with their loops. My appetite is great, but my energy level stinks - I don't gain weight easily. My energy level was poor before surgery, and for as long as I can remember, so it's not related to colon surgery. Running and exercising are no problem for me, but with my low energy, it's hard to motivate.
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italo
Regular Member
Joined : Dec 2011
Posts : 76
Posted 9/13/2019 8:31 AM (GMT -6)
I just had a proctocolectomy in June 2019 after battling UC for 9 yrs. My UC was moderate but never in remission. I had the colectomy due to high grade dysplasia in my colon. My surgery was done laparoscopicly. I was in the hospital for 4 days. It took a good 8 weeks to get back feeling normal and to full strength. The rectal incision took the longest to heal (all 8 weeks). I lost 10 lbs but have gained back most of it. I had a permanent ileostomy with an ostomy. At age 65 and battling UC for 9 yrs I didn't want to deal with any J-Pouch issues or cancer risk from a rectal cuff. I am SO pleased with my choice and my surgery. I got my life back. I can do things I had to give up (hiking, playing golf). I can do any activity I feel comfortable doing. My energy level is great. I walk 4-6 miles each day and feel great. There's no pain or abdomen issues with the colon removed. I can eat everything other than nuts and raw veges that might block the stoma. Dealing with an ostomy bag is easy and a non-issue for me. I just published a blog post about living with an ostomy. Here's the link: https://jdawgjourneys.com/2019/09/rollin-without-a-colon/
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Jason518
New Member
Joined : Oct 2015
Posts : 17
Posted 9/16/2019 12:06 PM (GMT -6)
After more than 20 years with UC that was never fully in remission my GI dr found cancer during a colonoscopy. Because of this, I had a total proctocolectomy done and now have a permanent ileostomy. I can do everything I did before surgery and eat pretty much anything. The ostomy itself is a pain in the ass but the inconvenience is no worse and most of the time considerably less that living with the UC was.
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jonba
New Member
Joined : Mar 2019
Posts : 6
Posted 2/2/2020 1:42 PM (GMT -6)
I had a subtotal colectomy with ilieostomy in April 2019, after 18 yrs of moderate - severe UC.

I had 4 days in hospital and was back to sport in 2-3 months. The main inconvenience was a very sore C-section type scar. I have no issues with my remaining rectum, but will have a completion protectomy in 2-3 years.

My energy and appetite are fine, stomach feels the same now and the stoma is a minor inconvenience for the relief of a UC free life smile
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ENIGMAWRAP
Regular Member
Joined : Nov 2010
Posts : 424
Posted 5/13/2020 9:02 AM (GMT -6)
Hey Jlang12,

You are asking questions similar to what I asked about 9 years ago.

I suffered with Ulcerative Colitis (at least, that's the name medical science gave it) for almost 15 years. A few weeks prior to surgery I felt terrible, and it only got worse right up until they laid me on the table and were about to put me to sleep - i didn't really care whether I woke up again or not...i just wanted it to stop.

Anyway, 6 hours later, i woke up in a daze, with no colon, and a flat stomach (that was due to a life-long hernia they repaired - lol...I got two for one surgery!). To be honest, due to long-term prednisone use (many years), it took me almost 24 months to recover from the surgery (what happened during those two years is for another post).

Once those two years were over, I realized I hadn't felt this good since I was in my early twenties...yeah, that good! As someone posted earlier, having the ostomy can be a pain in the ass. And, contrary to what most say, it does cause you to pause and think how you will accomplish a task (e.g., prune the shrubs) or how to plan a trip...Of course, this is nothing compared to having UC where one is always looking out for the next possible bathroom on the highway. This segways into - the surgery won't make you "normal" again, but, it will make like easier....that's something I've come to expect. It's easy to catch yourself speaking about an ostomy and comparing it to when we were "normal" - e.g., no UC or Chron's or anything else. We seem to forget we were very sick, and this surgery got us out of that hole. When the day comes that people can replace a lesion filled colon with a new one, then that will be the ultimate cure for UC, Chron's, or any other cause of our intestinal issues. Actually, those drugs might be nearer release than any of us think.

W/regards to daily life now? I pretty much eat anything I want. The one food I am careful about? Baked beans...why? The output is thicker than molasses!!! And, it's not worth the time trying to empty the bag, so at a cookout, I usually just take two tablespoon servings of the baked beans, and things are OK. So, i still get to enjoy the taste. I go to work, I go shopping, etc. - and, I still giggle on the inside while looking at other people walk around who have no idea I have an ostomy. And, also because I'm amazed I'm still alive and living life after all of this crap! (had to get that word in here somehow - LOL!)

W/regards to rectal stump. Yes, I have one. My surgeon knew me better than me, and said I would not be able to withstand the pain....he also said if it ever causes any problems, they'll just remove it from the outside (that is, they don't have to cut me anywhere on my abdomen - they'll just take it out from the hole that's there and sew it up - is that cool or what?!).

One thing on exercising - it's much better now. but i did some rehab for my back within a few months of surgery and got on this vibrating machine (it's supposed to help your vertebrae). Well, after 15 minutes I had to stop, and went home and lay in bed the rest of the day - it really hurt my abs doing that. Haven't tried it since, so not sure if that affects everyone the same or not. Otherwise, i do push-ups, sit-ups, planks, etc. Is there a different feel with a hole slit in my right abs - yes. But, I keep tabs on the pain. Actually, the one time there is any pain is when I'm sleeping on the couch on my right side and am laying to sharply at an angle - then my stoma lets me know to move...other than that - it's fine.

So, best of luck on your surgery - at keep in touch!!! BTW - i'm not on any medication whatsoever. After 15 years of taking up to 20 pills a day during some times, I am trying to stay away from any medication unless it is absolutely needed.

Cheers!
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