UOAA Discussion Board

Background.

This is not my first rodeo on a medical forum. Found this site at the recommendation from people on NAFC.

So, a bit about me.

I am 37, Male

In February 2019 I had stomach surgery for diverticulitis. I had two abdominal abscesses and a bowel perforation. Had 14 inches removed. Was told I would be okay, Moved from Florida to PA. in June, started working in July.

November 2019 ended up back in the ER/ED. Had a colonoscopy in December 2019 so Pa. doctor could get a good look at what was done in FL.
April of 2020 ended up back in the ER/ED then hand another colonoscopy and endoscopy with Gastroenterologist, More tests were ordered but Covid hit.

On 8/31/2020 I Had an Anorectal motility study where doctors found that I have type II dysseneric defecation with rectal hyposensitivity, incomplete bowel movements with chronic constipation and abdominal pain.

I have suffered from duel incontinence since April 2020.

Doctors are not recommending an ileostomy to help with abdominal pain and constipation.


It has been talked about for over six months now so looks like on the 21st I will be setting that up but I am scared.

I am not familiar with the medical conditions that you have, but there may be alternative surgical procedures to a conventional ileostomy. The J pouch is the most common alternative, but its success depends upon having a strong anal sphincter, among other considerations. Another option is a continent ileostomy, a procedure in which the surgeon creates an internal pouch (K pouch or BCIR) out of a short section of small intestine that is emptied several times a day with a plastic catheter. No external bag is required. You may want to research these options before proceeding with surgery. A while back, I published an article entitled, “Researching My Options” in UOAA’s magazine, The Phoenix, that might be helpful to you at this time. Its link is: https://secureservercdn.net/198.71.233. ... ions-1.pdf
The choice of options is a personal matter best made after discussing them with your doctor. Best of luck with whatever you decide to do.

Thank you for joining our Discussion Board where you will find others who have faced your concerns. From your post, you have been thru a very difficult time. Have you visited the United Ostomy Association of America website? Here is a link: https://www.ostomy.org/
There you will find much more information including first person stories of people who have undergone similar surgeries. As BillV suggests in his post, you may have options. Please take a little time to explore the many resources available on the UOAA site.
My thoughts go out to you as you begin this journey for a successful recovery. And I do hope that knowing you are not alone will help alleviate any apprehension you feel. Our Discussion Board is here 24/7 for you to contact us.

BillV wrote: 2021-12-19 10:16:04 I am not familiar with the medical conditions that you have, but there may be alternative surgical procedures to a conventional ileostomy. The J pouch is the most common alternative, but its success depends upon having a strong anal sphincter, among other considerations. Another option is a continent ileostomy, a procedure in which the surgeon creates an internal pouch (K pouch or BCIR) out of a short section of small intestine that is emptied several times a day with a plastic catheter. No external bag is required. You may want to research these options before proceeding with surgery. A while back, I published an article entitled, “Researching My Options” in UOAA’s magazine, The Phoenix, that might be helpful to you at this time. Its link is: https://secureservercdn.net/198.71.233. ... ions-1.pdf
The choice of options is a personal matter best made after discussing them with your doctor. Best of luck with whatever you decide to do.

The pouch idea will not work for me. The bowel surgery that I had done took 14 inches on my bowel and caused damage within my rectum due to constipation. The muscles in my rectum do not work right so I am on a bunch of medication that is not working the way it should anymore.

ThatFLGuy,
Welcome to the Board. I'd like to provide my ileostomy history.
My signature below tells the story of multiple surgeries. I am 66.
I waited, and suffered, for years with incontinence after colectomy/J-pouch. Lots of 'accidents', in bed, out at dinner, travelling.
My mind was made up for me when it came to the point where the polyps in my rectum (a small 'cuff' of muscle had been left after colectomy, to preserve the ability to use the toilet like 'normal').
I was terrified of wearing a bag, and all the images that came with that. All made-up images, I must add. The result was life-changing - no more accidents! The bag is really quite easy to care for. My wife quickly accepted it; seeing the improvement in my (our) mood and (our) lowered stress about going out anywhere. We have adapted quite well. I no longer (so far, 8 years later) have any scar tissue issues and can eat anything. Anything.
I urge you to join the UOAA and peruse the Phoenix quarterly magazine they produce. I still helps me with every issue I get!
Good luck to you.

Hi ThatFLGuy,

I think it's pretty normal to be scared before the surgery. I certainly was. I had all kinds of wrong mental pictures about how bad it would be to have a permanent ileostomy. For me, this has been much easier to adjust to than I ever could have imagined.

There is so much helpful, positive information here and on other web sources. One of the things I encourage you to do (if your surgeon hasn't already suggested it) is to have an experienced Ostomy/Wound care nurse mark you before surgery so your stoma will be placed in the best spot for your body. And if you have the option to choose who does your surgery, I encourage you to choose a surgeon from a hospital/surgical center that specializes in this surgery. I went to the "big city" hospital that had a colorectal surgery specialty center; it was so very worth the traveling involved.

You are much younger than I, but I encourage you to search out the young youtubers who have been living healthy and normal lives after this surgery. I was amazed and blessed by their positive contributions to the ostomy conversation (and pretty impressed with their ability to improvise solutions to some of the issues they've faced over the years. A couple of my favorites:

https://www.youtube.com/user/Veganostomy?app=desktop
https://www.youtube.com/c/TheFrontButtYouTuber

I wish you the best possible surgery experience and recovery. It sounds like you've had a tough time of it up to now!

Update.

My surgeon wanted me to try sacral neuromodulation before going with an ileostomy. Got the temporary implant on January 31st but sadly the implant did not work for me so it was removed on February 7th.

Now I am back to an ileostomy. The big question I have is that I see a lot of people that need supplemental nutrition through a feeding tube because of having an ileostomy. Just looking at people my family knows that have ileostomy there are four people that need feeding tubes due to it.
Just trying to see everything including side effects.

Still not scheduled for an ileostomy as I am recovering from the getting the temporary implant removed so will be talking to doctors next month.

ThatFLguy,
Sorry to hear that the implant did not work as hoped.
Please do not fear an ileostomy. I'm 66 and have had one for some 9 years. Best thing I did (though I did it with trepidation, sooo horrified I was of it!); it totally solved my adhesions, incontinence issues. I do take supplemental vitamins, due to the lower part of my small intestine being removed - Vitamin B-12, Vitamin D, that are normally absorbed down there. I concentrate on eating whole grains, lots of protein, low sugar, no soda (beer is better!), steamed veggies. I can eat anything now. Even popcorn, steak, mushrooms, Chinese food.
I am a member of a support group here in NJ, and nobody there uses a feeding tube. I guess it depends on just how much of the small intestine needs to be removed. The small one, with the stomach, absorbs most of the nutrients in food. The large intestine (mine was out in 1992) generally removed liquids and salts; I read that the left-over small intestine can take over some of that. But I do not fret about salt in my diet, since I'm lacking it. V-8 has my friend for decades now - salt and a bunch of veggie servings, easy to digest.
I get blood tests for all the minerals, micronutrients, etc. (copper, iron, B-12, D, selenium, etc.) at my endocrinologist yearly to keep track.
Good luck with the ileostomy. I really think that you will come to accept it and see how it benefits you. You are not alone!

Hi Guy i,ve had an ilieo. for 30 some years due to UC/crohns disease i eat almost all the foods that i ate before surgery except for nuts and raw fruits and veggies, i dont have a feeding tube, if i have any issue its dehydration so i have water with me all the time but i also drink a variety of fluids including alcohol. I had a full proctocolectomy in my original surgery and had two more surgeries since due to crohns causing scarring and atrophy. Be sure to have them mark the spot for the stoma as a bad placement can be troublesome also to make the stoma stick out at least an inch so it can empty into the pouch. good luck

I'd like to add the importance of finding and meeting with a WOC (wound, ostomy, colostomy) nurse specialist prior to your surgery.
ron in mich advice for placement of the ostomy is important also.
I strongly recommend getting a subscription to The Phoenix quarterly mag from UOAA.org. It is full of valuable info. It shows me that I am not alone in my journey. It can help you.
Dehydration is an issue; it led to my recent kidney stone.
good luck to you.

Hi - I have had my ileostomy for over 50 years due to ulcerative colitis - very few problems over the decades and definitely not on a feeding tube...never even heard that before - that is, from being on the various ostomy-related discussion boards over the years...