Struggling with ULARS after ileostomy reversal

Replies
13
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956
Past Member
Nov 27, 2022 6:17 pm

It's been 10 days since my ileostomy reversal - thirteen months after cancer surgery. I'm in the throes of agony dealing with ULARS (ultra low anterior resection syndrome) which I hadn't heard of until last week. Not one person in my medical team ever mentioned there would be anything more than some incontinence, frequency, and urgency issues - all of which go away. I've learned differently. Especially with an ultra low anastomosis like mine (2.5 cm), the symptoms will likely never go away and, even if they do, it takes years to achieve even a small amount of progress. I'm 64 and don't want to take that time. As soon as I can, I'm booking surgery for a permanent colostomy which will give me back my freedom. No poopy pants and no pain!

Morning glory
Nov 27, 2022 7:22 pm

I am sorry you're having to go through this. I don't blame you for making your decision to go back to the osteomy.

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Bill
Nov 27, 2022 7:32 pm

Hello ostomag.

That sounds like a sensible decision!

Best wishes

Bill

TerryLT
Nov 27, 2022 8:57 pm

It sounds like you are going through hell, and you made the right decision for yourself. I'd just like to ask a couple of questions! You say you had an ileostomy that was reversed, but will be getting a permanent colostomy. So you still have all or most of your colon? I'm sure I'm showing my ignorance here, but I wonder why they didn't just give you a colostomy to start? I was given a colostomy, which was not successful, so then went to an ileostomy, but they removed my colon as soon as it became clear that the ileostomy was working well for me. I do know that the success rate with reversing ileostomies isn't great, but that is because those people don't have their colons anymore. They would not be able to have colostomies. So, I'm a bit confused, not an uncommon occurrence!

Terry

Past Member
Nov 27, 2022 10:28 pm
Reply to TerryLT

Hi Terry, love to answer any and all questions :) I had a big chunk of my rectum removed but the rest of my colon is intact. A temporary loop ileostomy was created so the surgical site could heal after cancer surgery. The surgical site healed and the ileostomy was reversed 13 months later. Now that food is moving through the large intestine, there are many issues because I don't have the majority of my rectum as a 'holding tank'. The issues are so significant and life-altering that some people (like me) choose a permanent colostomy as a solution. Of course, we all know that colostomies are easier to manage than ileostomies as well. Please ask away if there's still something that's unclear.

 
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w30bob
Nov 28, 2022 3:31 pm

Hi Osto,

Wow, sorry to hear about your situation. It is amazing what doesn't get told to patients before their surgery. Mind-boggling is more like it. That really needs to change, but it probably won't. It's bad for business.

Sounds like you're making a good choice... best of luck to you!!

;O)

gentlejohn
Nov 28, 2022 5:18 pm

These symptoms are common after any low anterior resection. First of all, your surgeon should be sure you do not have a stricture of your anastomosis, which sometimes can be dilated. Assuming that there is no obstruction, it will take probably 6 weeks before you develop enough capacity to have a reasonably normal bowel movement.

TerryLT
Nov 28, 2022 9:56 pm
Reply to Anonymous

Thanks for the explanation. Wow, it always amazes me just how unique and complex some of our situations are. There sure is no 'cookie cutter' solution when it comes to our bowels and all the things that can go wrong. I know they do say that in general, colostomies are easier to manage than ileostomies, in my case, the opposite proved to be true. My colostomy was a disaster, but I'm managing really well with my ileostomy. Our situations are very different though. I hope your upcoming surgery is all you hope it will be and you will be improving your quality of life. Oh yeah, and welcome to a fellow Canuck!

Terry

Past Member
Nov 28, 2022 11:34 pm
Reply to w30bob

Thanks for your well wishes. Healthcare professionals seem to keep a lot of secrets in order to sell their particular wares :)

Past Member
Nov 28, 2022 11:37 pm
Reply to gentlejohn

Thanks. I'm sure there will be plenty of checking before any surgeon here will willingly give me an ostomy. There's something about their propensity to see how long their patients can bear the agony before relenting.

Past Member
Nov 28, 2022 11:39 pm
Reply to TerryLT

Thanks from your past ostomate and (God willing) soon to be new ostomate :)

Maried
Dec 27, 2022 8:23 pm

Another young lady on here is going through the same thing... so posted about a month ago.

elledubuque
Jan 09, 2023 1:26 pm

Is it getting better for you? I am only now starting to feel a somewhat sense of normalcy after an 11/16 colostomy reversed. Just hoping you are doing better now.

Past Member
Jan 09, 2023 2:43 pm
Reply to elledubuque

Yes, it is getting better and thank you for asking! Amazing, my takedown was the same day as yours. I started feeling better a couple of weeks ago when I finally figured out that I couldn't eat insoluble fiber (veggies, fruit, etc.) and had to stick to soluble fibers like Metamucil, oatmeal, etc., and the usual white foods. Because of the radiation, my bits are tender and the insoluble fiber causes more movement, which is just too abrasive. I only eat breakfast and dinner, so no food between 7 pm and 10/11 am. I take multivitamins and mushroom supplements. I now have some free time out of the bathroom to resume my yoga and walks. I find that if I get away from the apartment and I'm not so close to the toilet, I can exercise the necessary muscles to avoid leakage and not answer every call to empty. Very important for pelvic floor strength, I think. I'm interested to hear about your experience so far.