Questions about colectomy

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oso0690
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/10/2017 2:58 PM (GMT -6)   
Do you have any lingering issues long after the procedure? Nagging pains? I wonder if ulcers in the colon are just a symptom of something larger... something that could continue to cause issues in other parts of your life even without a colon. What do you all think? After colectomy, do you feel brand new again?

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14461
   Posted 1/10/2017 3:17 PM (GMT -6)   
Whether it is a symptom of something larger probably doesn't matter too much, since whatever it would be a symptom of is clearly unknown and untreatable at the moment. Hopefully in the future there is more that can be done to treat the "whole person" instead of removing the organ. That said, perhaps it is just the colon.

I know a lot of people said the moment they were back to being free of surgical pain, they noticed increased energy from being free of the inflammation caused by the diseased organ. I personally was fatigued before I had UC, and I still struggle with fatigue. I have my entire life. I didn't expect colon surgery to solve all of my problems.

I've heard people say surgery for UC is trading one set of problems for another, and while to some extent, it's true, my only problem since surgery is going ~5x a day, with no pain, urgency/blood. I don't know if that's a problem since i have some friends who go that much and do not have colon disease. I was a once a day goer before UC, so for me, it's an inconvenience. Going once a day after my diagnosis was becoming less and less likely the longer I dealt with the condition. I also traded some problems in a positive way, no more drugs, no more doctors, no more medical expenses - so it's not all bad trade-offs, no more anxiety about accidents. In fact, i'd say the majority of the trades, in my case, have been beneficial to me, with the exception of more trips and occasional butt burn.

This board is really anti-surgery to some extent. People would rather use a diaper, or drive around with a plastic bowl in their car than have surgery - so I hope you understand if you receive some negative comments, that's what you're going against here smile

You also have to take into consideration that surgical results aren't always the same and nothing is guaranteed. There is also no turning back. it's a big risk no matter how you slice is. Not something to be taken lightly.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Post Edited (notsosicklygirl) : 1/10/2017 2:20:44 PM (GMT-7)


cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1410
   Posted 1/10/2017 3:21 PM (GMT -6)   
No easy answer to this question bc so many people are different and IBd is crazy. But for a lot of people who have UC or Crohn's Colitis the extra intestinal issues disappear after surgery.

For me when my crohns was in remission I had almost no issues. I only had achy joints or moth ulcers when I had a flare. So removing my colon in a way did make me brand new. Minus having a pouch attached to my belly I don't feel sick at all. I'm about 10 months out so only time will tell if I'm one of the lucky ones who stays this way.

There are people on the ostomy board at least 5 years out still with no issues.
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!

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3509
   Posted 1/10/2017 3:55 PM (GMT -6)   
conceivably the genes predisposing to IBD, could predispose to some other inflammatory disorder. For example, psoriatic arthritis. IF someone has joint pain secondary to IBD/flare, then ending flares generally ends symptoms outside colon.

But if you have a co-morbid 2nd condition, one springing form the same genes, but otherwise not caused by the 1st condition, then it is likely the symptoms of the 2nd condition continue.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 8761
   Posted 1/10/2017 3:56 PM (GMT -6)   
Tell us a bit about your Ulcerative Colitis symptoms and what you're currently taking and have tried. Are you just curious about surgery or are you considering it, yourself?

Ulcerative Colitis is confined to the large intestine, so once that is removed then there is no more UC within you. Nobody will say surgery is perfect and makes someone 100 percent like they were pre-uc. Surgery does give one predictibility and control over what was an illness that completely defied control in patients who need it (mesalamine, immunomodulators and biologics all failed). It can be quite amazing to have something that finally works after years of trying and failing virtually everything.

It's still possible to deal with a few things post-surgery, usually short term rather than long term though. Some of us do get autoimmune disorders in 2's and 3's so it's possible to still have joint pains left over (rheumatoid arthritis), skin problems (eczema), or other such things remaining. As UC is likely an immune-deficiency or auto-immune itself.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR, 5mgs pred (tapering)

Tips for surviving UC: learn to laugh as it helps, get a good pair of running shoes for bathroom runs, and appreciate the small things.

Post Edited (iPoop) : 1/10/2017 2:59:31 PM (GMT-7)


oso0690
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/11/2017 10:31 AM (GMT -6)   
Thanks for the replies, everybody. I am just the concerned husband.

My wife has tried many things: Remicade, Simponi, 6MP, Entyvio, etc. which have all failed. Steroids are no longer working either and she is currently in the hospital for a couple days. Her GI wants to try Stelara and has recently talked about the possibility that what she could have is Crohn's instead of UC.

Just trying to find out what other experiences are like.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14461
   Posted 1/11/2017 10:42 AM (GMT -6)   
With the possibility of Crohn's, the options are different. Mine was straightforward UC, so removal of the colon was a good option for me. With her lack of response to the medications, surgery would be a good option normally, but with Crohn's, the inflammation could end up attacking other parts & having less, in that case, could make things worse. Very difficult situation. I am sorry. I'd recommend you do additional tests to try to figure out whether it is truly Crohn's before doing anything.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1410
   Posted 1/11/2017 5:54 PM (GMT -6)   
I'm sorry your wife is in the hospital right now. This disease is very frustrating. NSSG provided a good perspective. Surgery isn't as cut and dry or curable if it is Crohns vs UC. A lot can depend on where the disease is, if it has ever been in the terminal ileum or small bowel.

My diagnosis always presented more as UC because it was confined to my lower left colon. I had the disease for nearly 2 decades with no disease in the small bowel. I'm considered to have Crohn's colitis. So in my situation the benefits of a colectomy greatly outweighed the risk, in my opinion and my surgeons. But Crohn's can appear anywhere so there is still that risk in my small bowel.

Similar to your wife I had been on all the drugs. Only 2 I hadn't tried with Xeljanz and Stelara. My GI wanted to try Xeljanz but after so many years I just wanted surgery. There are a couple folks on here who are having great success with xeljanz and some on the Crohn's board using Stelara.
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!
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