Colonic Inertia

Thanks for all of the life affirming advice. It sounds like you have a great little community of supporters here. I had a colectomy for colonic inertia (basically it shut down completely) with ileostomy on May 14/2012 I am still getting used to having an ileostomy and I am not sure I will ever adapt to it. I am holding out in hope that in one year I can return to my surgeon who will be OK with reconnecting me. I would still need to undergo some tests to make sure my rectum was going to work well.
I went to a physiotherapist who is specifically trained in pelvic floor dysfunction. She was AMAZING and got me doing some neat exercises to retrain my muscles. She also used a foley catheter up my rectum. She would put it up there and then inflate the balloon with air to see when I could feel the pressure. When I first started seeing her she could put 160cc of air in the balloon and I felt nothing. After a few weeks of this my bowel was recognizing pressure of 40-60cc. She was so kind too which helped. In the end my colon just decided to pack it in and no amount of physiotherapy was going to change that.
Good luck to everyone on their journey where ever that might be.

I was told after my total colectomy that I have colonic inertia..but no one seems to think anything should be done about it. and to add a small insult to injury, I now have a hernia that is almost as painful as before I had the colectomy!
I have a lot of problems emptying, but the bigger problem seems to be dehydration, as I keep going for days without being able to eat or drink ANYTHING without vomiting it up within mere seconds of swallowing it :( The last time I ended up at the e.r. they did the c.t. scan and found the hernia, and when I was dehydrated then, they didn't give fluids, just told me to stay away from spicy foods...
Since I also have celiac, I pretty much avoid ALL foods..
Just very frustrating.. I went this past Monday for a pelvic floor study and was told all was great there. How is that possible when everytime I make a movement and my butt cheeks spread, ( like squatting, or taking giant steps up and down) I am pooping! He did say there were no strictures or anything, so I guess that is one good thing.
The other thing I was told was that I had to start physical therapy for my stomach? has anyone else had this? what the heck is it??????
thanks for listening, so glad some people have had great success, it means there is hope :)

And you are right, I am really sick and tired ( figuratively this time) about not having any quality of life!!

Hello everyone

I came home last wednesday after 8 days in hospital so it has been two weeks today since surgery.  Had i not had complications then i would have said i recovered fast from this surgery.  However just a few days after i started getting leaks and then i noticed a suture had come away right underneath my stoma - which is rather flat by the way - and the hole just kept filling up with poo.  unfortunately this all occured on a friday afternoon and all the stoma nurses had gone home for the weekend so i had no real help to deal.

I was having a meltdown in hospital as a couple of doctors who saw me at that weekend were saying all sorts of things like i may have to go under general anaesthetic to have a newly fashioned stoma etc. Anyhow i saw my own surgeon eventually on the monday, and he said it will heal on its own and nothing needs to be done. I didnt get any respite from the leaking until the tuesday after when my 'usual' stoma nurse saw me and straight away put me on a convex bag with eakin paste.  the skin breakdown was awful - i had about an inch of it under the stoma and it was bleeding bad. anyhow it all seemed to be sorted and i came home last wednesday.

However i am still getting breakdown of skin about 10mm under my stoma and nothing is helping and i am wondering if it has been all worth it as i feel so discouraged.  i am feeling somewhat isolated in my hell of this stoma and cant believe it is happening. did not see it coming at all.

i have local stoma nurse coming tomorrow at last.  it seems no one wants to help me this time round and i feel alone and isolated. i am scared nothing is gonna help.  will this improve? (btw val i did not get your email) x

hello. many people have gone through this here. however each surgeon does things different. some dont remove the large bowel and just give an end or loop ileostomy, or go straight ahead with the colectomy and ileo-rectal join. however if you get reversed then as long as your rectum is working ok you will be alright - outcome is never guaranteed but if you have the tests - like you have - then it gives a clearer picture and helps with the decision.

hi again.

I am afraid i have not although like me many spend years trying to sort themselves out before realising quality of life will not alter and surgery becomes the only option. Many have travelled this path and come out the other side. the good news is your rectum works well?

It seems that if you can take laxatives that are working and that give good predictable results then carry on. i spent a decade toing and froing to three hospitals until i got referred to someone who specialised in these issues . I am in the UK but i have heard ppl on here rave about mayo clinic and how good they are. you may want to set up a new thread to get more info on surgeons there?

in my case and for many, laxatives had absolutely no effect and if they did the results are just not satifactory. I had ops that did not help me at all and in fact segmental removal of a lazy bowel is the wrong thing but i had it done as i was naive. ended up on 25 senna tablets a day plus picolax (wash out powder). You are only 31 and want to live life to the full. it is hard decision but at least you are getting more info that will help you with the way forward. i take it senna has no effect on you?

WOW, this link is amazing!! I can see that you ladies have all come such a long way together!!! It's so reassuring to see that I am not the only one with colonic inertia and all the complications!!! I know Rosemary, Karen and Sarah but don't know the rest of you.....yet

I would love to connect with each and one of you as our stories are so similar!

I too had subtotal colectomy (entire colon removed) for colonic inertia and complete rectal prolapse (sounds similar to yours Hoodaya where the entire rectum and anus was blocked from the prolapse). They performed a rectal mucosal prolapse repair and banded it with 14 bands!!! That part of the op was successful, but unfortunately the colectomy only made matters worse! It appears that the bigger part of the problem was rectal inertia! For 7 years i have been unable to eat solids and still cannot evacuate on my own! I too, only eat my soups and soft foods late in the afternoon due to the rectal and pelvic pressure which builds up even on fluids. I do regular bowel washouts every morning and evening to relieve this pressure! They also wanted to perform a STARR but being a nursing sister I had no faith in the particular surgeon who wanted to do the op, so went down south and had another specialist to the colectomy and mucosal prolapse repair instead.

I have a sacral nerve stimulator to stimulate the pelvic floor nerves as I too have no nerve senstation due to pelvic floor dysfunction (tried intensive biofeedback for 1 year with no relief from symptoms).

I regularly have flare ups where small bowel goes into spasm, distends, inflames and cramps and requires hospitalization!

ng1031 I think this is a wise way to distinguish the actual problem! I still think my colon was removed unnecessarily and that the rectum was the problem from the beginning. I too, failed the motility marker study with all the markers still in the ascending colon after day 7 but this could be because there was rectal dysfunction. If you block something at the bottom, it's only natural that the pipes further up will slow down! So, yes, i think this will determine what your problem is and if the stoma works for you then you can safely say that the colectomy should be the answer to your prayers. Good luck!!

I would love to be a part of your special "family" and connect with all of you! The support on this site is really what helps us get through the tough times!!

Lolly
xxx

Hi everyone,
I haven't been on this site in months either and I was a little bored right now so I thought I would check out how everyone is doing.

It's been 7 months since my take down and I'm doing better, so glad to not have a bag anymore. I had a bag for a year (3 surgeries due to my Colon perforating and had to end up being completely removed, so I don't have IBS or a Jpouch and other things you guys have). My surgeon has explained to me that I have a very unusual situation but this site has really helped me when I needed to talk. I still suffer with TERRIBLE diarrhea if I eat fresh veggies or fruit. I have found out that if I eat bread with everything then it's not as bad (a tip from this site awhile back). I will have diarrhea all my life I was told but sometimes worse than others. I've been learning to deal with it. I wear a maxi pad at all times. The hardest part I guess is I never get a full night's sleep. I'm up running to the bathroom every 1-2 hours. The other night I only went once and I was amazed so I thought...what did I eat for dinner that helped. All I ate was an ear of corn and a huge piece of fresh sourdough bread (wasn't very hungry). The night before I made a big salad and it was hot so I ate it along with my steak....I was in the bathroom from 10pm to 4am...not a wise choice. I guess the "white diet" is still the best for me (white bread, rice, potatoes, pasta...ect.) I shouldn't complain because at least I haven't gained weight and I get to eat some BAD things that I couldn't eat before without packing on the pounds. I try to see some type of blessing in everything I go through and overall I am truly doing better than a year ago when I had a 6 1/2 hour surgery that did not go well. Last month I went on vacation to Arkansas for a family reunion and it's the first time in over a year that I could put on a bathing suit and go in the water (no bag...yeah). It was a good feeling. I just didn't stay in real long.
Glad to hear from you all. Take care,
Linda

Linda - If I go off the white diet I have diarrhea so I usually eat conservatively. Haven't had corn, beans, fresh fruit, etc. since my surgery two years ago because of that. I do treat myself to small bites now and then and usually get by with it. Thanks for the tip of eating bread with everything. Sure hope that helps because I would LOVE to have a salad. :)

NG and Lolly - Welcome!

At the post op visit with my surgeon he told me that the pathology report showed there were no nerve endings (ganglia) in areas of the colon. So no amount of diet adjustment, Miralax or laxatives would have helped. I'm very happy that my colon is gone after life long constipation.

NG - I didn't even know that they were going to do a pathology report. The surgeon didn't say what else the colon was tested for.

I have a personal question...

For those of you who have had your large intestine removed and replaced with a j pouch (small intestine hooked up to your rectum).. I understand that it takes some time to get use to going to the bathroom ALOT.. any stories of how bad this is and how long it took to get use to or your body to adjust. Also I have a fear.. its a weird one but its life.... did anyone have accidents during things like sex???

hello jackie glad you are sort of up and about. they wont discharge you until you pass gas as that is a sign everything is started to wake up etc. the same was said to me the day after my op when i could hardly open my eyes let alone walk!!!! stupid surgeons i dont get them. i stayed in for 8 days eventually, but would have come home on day 4 or 5 if no complications. Prrevious surgeries it has been 9 and 5 days respectively. Ask for something a bit stronger for pain? doctors usually write you up for drugs prior to surgery.

Remember going home is when you feel well enough and not before.!

Sounds good. Well you have passed gas so not long now until bowel movement. probably next 24 hours or so.