Has anyone had an ostomy for evacuation disorder? Pelvic floor issues, muscles no longer working

[nancyt36]

Good morning, I'm new to this group and need assistance. I'm spending day in bathroom in terrible pain with cramps have large rectocele but problems for 30 years with bowel issues and now at 73 I can't function and colorectal surgeon is suggesting an ostomy, so does my gastroenterologist.

I also have tremendous pressure in rectum from having great difficulty having bm and I produce a lot of gas. Colorectal doc at Northwestern doesn't think fixing rectocle will fix bowel issues but if I don't have crohns or colitis or cancer doing an ostomy will this be helpful or cause tremendous complications?

I can't get all stool out and I'm manually removing so they think an ostomy will solve my issues and give me freedom? I'm worried about complications and not being able to take care of me?

Thanks.
Nancy

[To Dream a Dream]

Thank you for joining our Discussion Board. Although, I have no personal experience with your diagnosis, I believe I have seen similar posts by members. Please keep checking back with us on a regular basis. Also, have you searched our board & the UOAA website for previous posts &/or information about this issue? Here is a link: https://www.ostomy.org/
Hoping you receive a reply soon.

[lolapergola]

Hi Nancy , I'm sorry I don't know the answer .I do know one thing , people do have ostomies for other reasons apart from Cancer ,Crohns, disease etc - I did for incontinence after childbirth .I think what you are saying is - you can't empty your bowels so peristalsis has stopped ? so nothing is moving along like it should ? If that is right , then I'm sure your doctors will know exactly where to place your stoma to achieve you going again .If you have a colostomy , where stool is firmer , you can irrigate your stoma .This means by washing it out with water your lower bowel will expel the contents .It might be something to ask about .I hope someone answers soon for you , that has had the exact problem ,and knows more
best wishes
Lola .x

[mam226]

I am brand new to this board and was just about to post my question when I read Nancy's post. I have a very similar situation. I have an anal recotocele and an anal stricture. I just had a procedure to open up the stricture. I am 67 yrs old and have had issues since I was 22. I've been to the emergency room about 10 times over the years for impacted stool. I use Miralax nightly and sometime lactulose. I need to keep my stool soft to prevent blockage.
I also have no motility. So either I have soft stool which comes out everytime I pee, or I live in fear of having a blockage. I've been trying to get the right balance of miralax but that hasn't worked due to my extreme fear of ending up in the ER again. I am getting too old to go through 8 hours in the bathroom trying to manually get the stool out with a metal object One time I almost passed out. The stool gets stuck against my vaginal wall and when I put a gloved finger in my vagina I can feel the stool right there.
I have spoken to a co-rectal surgeon about a year ago. He said I will know when I'm ready. I thnk I'm ready now but scared that living with a colostomy will be worse and I will regret my decision.
Anyone with similar experience who can help would be so greatly appreciated. Thanks

[Diane C]

Howdy,

Yes, I’ve had both a colostomy and later an ile ostomy because I inherited from my father muscular dysfunction called “pelvic floor disorder” or “non-synchronous relaxation of the voluntary and involuntary anal muscles” – or other terms. I’ve been debating writing a book or blog about it to help others but don’t know how to target the audience and the subject makes some queasy.

As a child I was constipated. Despite innumerable laxatives – and then Fleet enemas and glycerin suppositories – I also experienced painful distention and had to wear clothes like smocks to hide my bulging abdomen. I was hospitalized in high school in the 60s and doctors tested me but found nothing wrong. When I was discharged, I continued the hospital regimen’s of tea and jello as it made evacuation less of an issue but also resulted in anorexia nervosa.

I’m now 70. It’s fair to say that this condition has monopolized my life. I’ve also spent hours in the bathroom and was late to work so lived on laxatives for a while. I tried a macrobiotic diet, bland and bulky foods, meditation, hypnosis, and biofeedback in Chicago and Quebec where 2 excellent clinics are located – the literature claims biofeedback will help the condition a great deal – for me, it did NOT.I also had botox injections in my pelvic area but, while gas was released, stool was not. I found out about those clinics and doctors from the International Foundation for Functional Gastrointestinal Disorders (iffgd.org) – a small but VERY helpful organization you might contact.

Eventually, the physician in Chicago suggested a MACE surgery. Stands for Malone Appendiceal (or Antegrade) Colon Enema Procedure in which one’s appendix or another piece of tissue is made into a tube. (Sometimes spina bifida infants or those with paralysis receive a MACE and their parents are able to ensure they are not constipated.) You learn to irrigate water or perhaps another kind of “cocktail “ with Miralax through this tube. A friend built me a special pump for it that created enough pressure so that the procedure every morning didn’t take more than an hour.

However, due to transit time or even incomplete defecation, by afternoon or certainly evening, I felt the need to evacuate again. I often had pain in my left lower quadrant. So, when I turned 50, I decided I’d finally get a colostomy. See the Irrigation Forum because I did irrigate my colon using that MACE procedure which most irrigators do not have the luxury of taking advantage of. Things went along fairly well until I developed a hernia and also an abscess on my left side. When that occurred, surgeons concurred I should get an ileostomy. I’ll admit I fought this idea for years because I wanted some control and one can train a colostomy over time. So, for several years, I’ve had an ileostomy.

Were these the right courses of action? It’s hard to say and everyone is different. I didn’t have a rectocele. My anorectal canal was at a 45 degree angle which prevented defecation and I couldn’t go on living that way. If I could have lived with the colostomy, I’d have preferred that. I’ve found the ileostomy more than bearable but I now have other conditions like Exocrine Pancreatic Insufficiency (EPI) that causes my output to be oily and I can’t digest fats easily so take medication and enzymes. How this occurred – I don’t know (I don’t drink alcohol). I wear a high output pouch – or even my Convatec irrigation sleeve under slacks – because of the amount of watery output I experience and there can be leakage. If I watch my food intake carefully and eat 5 small meals daily and hydrate with water often, I fare much better. I still get distended at times. But at least, I am defecating and no longer constipated.

If you are dealing with this problem, you should get a manometry test to determine the condition of your anorectal muscles and a defecography which takes Xrays as you eliminate a substance like mashed potatoes. Your surgeon will know better how to help you. Also, most surgeons test the nerves in your pelvic area to ensure they are working. These tests are quite common now but unheard of when I was a child. You CAN get used to an ostomy – I did and it’s such a relief not to be constipated any more but it can change the way you live your life at times. Note – I’ve had several intimate relationships and the ostomy was never a barrier. But it takes getting used to and do ask about any other attendant issues you may have to deal with.

So, should I write the book? Good luck to both of you!

[To Dream a Dream]

By all means, Diane, go ahead & write the book. You certainly have had the personal experience & much acquired medical knowledge to produce one. Your target audience could include both those who have these specific bowel conditions & a more general population of people who have or may face having an ostomy.
It is always good to see your posts. Have you considered writing an article for The Pheonix magazine? It would definitely reach more readers.

[ThatFLguy]

My colorectal surgeon feels that I have paradoxical puborectalis syndrome. This follows both manometry, defecography test and two years of physical therapy. Nothing has worked and my pain level is very high. I am facing an ostomy due to this as constipation is getting worse even with continued medications. ( Miralax twice a day, Dicyclomine 4 times a day, three stool softeners a day, smooth move tea, and three liters of water a day) Nothing helps the pain and constipation.

I meet with a PA-C this Monday to see what and when the next step in my treatment will happen.

[steiconi]

I had a lot of scar tissue from cancer resection, which made my rectum stiff and only barely functional; lots of fiber and daily enemas barely kept up. But I had other issues as well, particularly a fistula that caused frequent infections.

[Meli]

Hello!
Sorry in advance for the length!
I'm new to this place, but very excited to learn from some experts. To answer your question - yes, I have an ileostomy for those reasons. I have autonomic polyneuropathies, but it's taken decades and every other diagnosis to get there. First, gastroparesis diagnosis, but about 5 years ago my constipation became unbearable. I did the defacagraphy and anorectal manometry. Back then, it showed a rectocele, partial prolapse, and spasms with my anal sphincter. I did like 16 weeks of pelvic floor therapy. I also had a smart pill study that showed my small intestine was the slowest so it was called colonic inertia or slow colonic transit. By 2019, after PFT, using the therapy tools at home and colonics every 2 weeks, it wasn't working. I tried botox on my anal sphincter but it had no change. After multiple hospital staycations, I finally got an ileostomy. I was excited because I thought anything would be better. I wasn't prepared and it's taken a long time to accept. Anyways, before the ileostomy I had a biopsy done of my intestines and during the hospital stay they finally did the right test! The biopsy showed I had little/no cajal cells, which are like the brains of your intestines and coordinate bowel function. This is how I learned that no amount of meds or training would have changed the outcome. I didn't have the ability because my circuit was messed up. I was diagnosed with autonomic polyneuropathies at that time. If your PFT isn't working, this is something to consider asking about. I've gotten progressively worse as multiple functions are giving up. I'm sharing because it's all a part of a bigger motility issue, including gastroparesis, intestinal dysmotility, neurogenic bladder, neuropathy, migraines that cause eye swelling, heart issues, etc. If you start to notice there are other issues and your doctor says they aren't related, consider a motility specialist. I asked for years if it was all related and told no so many times I was giving up. As for your question, the ileostomy solves the problem, but because of motility I have to take meds to get movement in my ileostomy. I also had a pyloroplasty to help empty. It's not a perfect system, but it helps. I also do TPN (plus some eating) so that changes my output. I've had bowel obstructions, but I now notice the changes before I have to have another staycation in a hospital! Hope this is helpful!

[lolapergola]

I haven't heard from Nancy since she had her operation in January .I'll p.m. her and let her know she has messages on her thread .

[nancyt36]

Hi Lola,

Thanks for emailing me and trying to find out how I'm doing. No colostomy yet, set for 5/10 or 5/17 depending when my oral surgery is finished. Having a very difficult time functioning at all, can't eliminate except with miralax and tons of suppositories, all causing major cramps and tons of rectal pressure plus rectocele. No doc will fix both at the same time. Colorectal surgeon I'm going with believes doing the colostomy will give me a much better quality of life. I have no choice but to do the ostomy. I've researched enough, just want some peace from this hell.

[lolapergola]

Hi Nancy , so glad you got back to me and all the other people on the board .I am sure you are more than ready for the surgery , it sounds like life has been very tough with the lack of movement in your bowel .Will be rooting for you in May x Please let us know how you are doing when the time comes X