colonic inertia with pelvic floor dysfunction

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heatherbci
New Member


Date Joined Feb 2016
Total Posts : 5
   Posted 8/3/2017 12:29 AM (GMT -7)   
Hello,

Hello,

I am a 19 year old female and I have colonic inertia as well as pelvic floor dyssynergia. I've had problems my whole life, and has just gotten worse year after year. i started with a ginormous (beer belly looking) stomach at about 3 years old. my parents took me to a gastro and couldnt make a diagnosis but she knew that i couldnt go to the bathroom. we tried 5 years of both over the counter and prescription medications she recommended to us with no luck. i had to have depactions about once a month. when she saw that wasnt helping, i got a mic-key tube placed to help force the stool out with saline, castle soap, bisacodyl and saline enemas and so on. i did these treatments every day until i was 17, so about 11 years. When i hit 8th grade, thats when it started getting really bad. i only made it to school about 5 days in a month so i had to become homeschooled. the pain became so awful i wanted to cry every time i ate. then i had nausea from both the pain and also from the treatments because half the time the medicines/liquid wouldnt even come out so it just sat in me, taking bloated to another level. we still hadnt come to an actual diagnosis by the time i was 15, so my doctor sent me to ohio (im from california) for specialized testing and thats when i got diagnosed. a few months later, we went back to ohio for a month to get a sacral nerve stimulator implanted. we patiently waited for two years, but unfortunately it was ineffective. so, when i was 17 i got a total abdominal colectomy with ileorectal anastomosis. (small intestine attatched directly to rectum) and i thought would be a start to a new life. unfortunately it was very short lived. i was able to get a job for 4 months then had to leave. i did have trouble right after surgery, but i felt much better than i did before and wanted to live a life. but then it started getting really bad again. i had to leave work to go to the ER the pain was so bad. i was for certain it was an ileus (as i have had one before) but it was nothing. just pain. thats when i knew i needed to leave work. now, we are at our last resort, which is a peristeen pump. i have been doing every day it about 6 months now and i feel like im doing my old treatments again. i cant leave the house at all, i developed depression and severe anxiety over the years. even if i feel like im doing ok, my anxiety kicks in that im going to end up not feeling good. my doctor has recommended biofeedback surgery but she said it is only a 50% chance of working and i have to commit to it (about once a week for two years) and there is not a clinic close to me so i would have to drive to my hospital thats over two hours away. my last option is an ileostomy. i want to go to school and live but i cant stand the thought of a bag the rest of my life. im just worried about bag leaks, it being smelly, being a stomach sleeper, my own body image issues and what other people will think. im almost 20 and just sit at home every day and try to deal with the treatments, pain and nausea and hope there will be a magical solution. i know ive hit a dead end, but i feel i cannot commit to an ileostomy. anyone who has been through this or something similar, or anyone who has an ileostomy/colostomy for life, please let me know your thoughts. be as blunt and open as you want, i would appreciate it so much

heatherbci
New Member


Date Joined Feb 2016
Total Posts : 5
   Posted 8/3/2017 12:33 AM (GMT -7)   
*biofeedback therapy not surgery, my bad lol

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 675
   Posted 8/3/2017 2:15 PM (GMT -7)   
Heather:'
I have a permanent ileostomy and am not shy to talk about life with an ostomy.

I have had my stoma and ostomy for about 6 years. My stoma is well behaved and low maintenance in terms of skin care and changing of the pouch. I rarely give notice to my ostomy. It is, quite simply, no big deal.

No one would know that I have an ostomy by looking at my appearance.

Modern pouching systems are quite advanced. Poaching systems are completely odor free and made of elastic polymers that conform intimately to the skin. The result is a low-profile ostomy pouch that is so unobtrusive and you forget that you have a pouch on.

I empty my pouch about 6 times a day. The ileostomy output is the consistency of chocolate syrup. It takes less than a minute to empty my pouch into a toilet and be on my way. By emptying the pouch frequently, you do not walk around with a full pouch of "poop" on your abdomen.

Ostomy pouches come in different sizes and in different styles. There are hundreds of variations of poaching options. Hundreds. Finding the optimal pouching system for you is a process of trial and error. But when you find the ideal pouchinf system for you, life is good. In the 6 years that I have had my ostomy, I have had only a handful of leaks or full blow-outs. Leaks and blow-outs are a rare occurrence. I use the Coloplast Mio line of ostomy supplies. I consider my poaching system to be almost bomb-proof.

Life with an ostomy is a good quality if life.

There are scores of younger individuals who have permanent ostomies. Teenagers and young adults with Chron's colitis and ulcerative colitis often choose an end ileostomy to improve their health and life.

An ileostomy should not limit you in any manner. People swim, run, hike and back-pack, practice yoga, attend concerts, pursue graduate school and professional careers - all with an ostomy.

For all of the varied health challenges that I have, my stoma and ole ostomy is at the bottom of my list of concerns. My stoma is actually quite cute. It looks like a small button on a shirt sleeve. It is less than 1 inch in diameter sitting to the right side of what was my former belly button.

Reading through your post I was struck by your narrative of dispair and despondency through your perceptual lens of an intestinal tract that has not been your friend. I think you will find that an ileostomy would give you a new lease on life. A quality of life.

I consider my ileosotmy to be a friend. I am hear to say that my life is better with my ostomy.

The United Ostomy Association of America (UOAA) is a non-profit, 503-C organization whose role is to support to those with ostomies and to promote education and knowledge of ostomies. The UOAA has an online support forum that is active and vibrant. I encourage you to visit the UOAA web site and support forum. Ask questions and "meet" like minded individuals with ostomies. There are current members participating in the forum who have ostomies due to colonic inertia and pelvic floor limitations.

www.ostomy.org

I am grateful to my ostomy every day. Life is full of challenges. It is how we approach and deal with challenges that determines our quality of life in adapting and coping to change.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

heatherbci
New Member


Date Joined Feb 2016
Total Posts : 5
   Posted 8/3/2017 5:27 PM (GMT -7)   
Hi Karen,

thank you for your sweet and helpful reply. i think i am going to attend a support group to get more advice before making the big move. i believe an ostomy will give me a new chance at life, and am just worried that the potential downsides will take over my life. but im realizing that its better than having extreme limitations and pain every day. thank you again and i wish you nothing but good health and happiness!

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4906
   Posted 8/4/2017 3:08 PM (GMT -7)   
I only had a colostomy, had an aunt with an iloiostomy. There's a big difference. Iliostomies don't stink.

The advances in bags and everything have been amazing since I had mine. Come over to the ostomy group on the forum! You will find loads of help, advice, friends.

You are doing things right - investigating before making the jump and going to a support group. I hope you find happiness in your group! I love my breast cancer group and friends in this forum. Friends and family can only take so much information and expect you to be "cured" of whatever the ailment is. They are still friends and family, but you need people who will listen to your woes week after week, month after month, year after year! I've been this forum and my support group for 8 years. By now I am as much help as the one getting help.

You've already been through more than I can imagine. I wish you all the best.

arobo21
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/6/2017 2:58 PM (GMT -7)   
Before I share our story, may I suggest looking into the Mayo Clinic, ideally the main branch in Rochester, MN. We are on a waiting list for an extensive 2-3week program. I think it's like 6 hours every day M-F! That makes it as intensive as my wife's pain management program (which I explain below), which is crazy. Then take it from there. If you ever decided to go through with the iliostomie, you'd probably want it done there anyway if not NYC. That's not to suggest there aren't highly capable people elsewhere.

I came here on behalf of my wife who has a history of Crohn's and IBS, but over the last few years she has developed a neuropathic pain that's chronic but her pain therapy has helped with that; eventually diagnosed with fibromyalgia at the Mayo Clinic. She was later diagnosed with pelvic floor dysfunction at Mayo after finding stool packed high in her abdomen, which was not a surprise to me because she hasn't had what I would call a healthy bowel movement in years. I think the neuropathy developed from this. She also had developed that "beer belly". We thought it was just the Lyrica or something. Luckily her pain management not only helped with pain but also took her off many meds. She is doing much better in the brain fog department, isnt dependent on controlled drugs like Klonopin, and has shed some considerable weight (we still think Lyrica heavily contributed to that weight gain). She was also able to incorporate exercises and cook more.

We were set up with a PT that specializes in female-dominated conditions, such as pelvic floor dysfunction and other bladder-related issues.

Then after a few sessions, she started feeling nauseas more often. Now, instead of chronic pain, chronic nausea and accute stomach pains have become the focus. Our theory is that what our PT (plus excerise, movement, better eating, gluten-free) has been doing is working, but only to a certain extent. We believe that her body is in super "get this literal crap out of me" mode and is trying, but can't.

Furthermore upon doing research and talking to more doctors than I can count on both hands, we're fairly confident in the theory that, in her case anyway, her pelvic floor issue is a result of desensitization, which would have been brought on by the chronic bathrrom issues she's had since seven years old, including Crohn's.

I am always willing to keep up with those who want to be kept up with. Please don't go silent. The more people who speak up about these perplexing conditions, the faster we can get to the bottom of it.

Remember, we all once thought stomach ulcers were "extreme stress pains". Keep positive, I know I try to, not because I have to, but because this area is so new and just needs time and attention. My wife has a harder time but with support and clearer thinking, it's far easier to get through. Reach out to people and don't stop knocking on doors, so to speak; do away with the doctors who don't seem interested, find the ones who do, and keep at it. Make them feel something inside that says "I'm going to help solve this with you." They're out there, just look. Sometimes you will have to go through the motions and jump through their hoops, but eventually they'll have to help answer for something.


PS...I have also been looking into the gut microbiome. It's a far more popular area of study today because of our technology and what we've learned regarding the importance of our gut flora. There's trillions of bacteria necessary for our gut to properly operate yet we only conventially understand a small fraction of it. The University of Maryland, for example, has had gorundbreaking studies done in this area. Check it out. Your GI should know of a test or two that you can take; they usually involve blowing into a tube, like a breathalizer or something.


Best of luck to you.

Adam

Post Edited (arobo21) : 11/6/2017 3:16:14 PM (GMT-7)

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