Considering Colostomy surgery to relieve pain and suffering!!

[Snotty33]

Hello!

My main trouble at the moment is that it seems that my bowel reflexes are not functioning as they should.

It seems to me that the pain is related to stool that "fills" my rectum, it feels like a "pressure" and a burning sensation, this gets worse when i sit.
Its more or less constant, with periods that are without pain (think this is when there is little or no stool in my rectum).

This pain is totally disabling and its very stressful to "know" whats causing it, knowing that some vital part of your body doesnt function.

Still im only 8 months post my operation so i still think i have some time to recover some function. A few times when ive been walking ive actually felt some "urge" (been awhile now), i guess thats maybe a reason to let more time pass before i do anything.

It seems that its "only" the bowel refelxes that are afflicted, cause it gets down there in time but stays there too long and causes nausea and pain in the lower left are of my stomach and around the rectum area.

Doctors wont do this operation at this time because they think that i might get phantom pain. So im on some irrigation schedule but that doesnt work very good and actually causes pain which in my opinion cant good for my rehabilitaion process.

In my opinion i think that my rectum and bowel reflexes need to be left alone without invasive methods that causes pain to recover as much as it can do.

For the moment i have no such method that works. So my question is what should i do? Should i have a temporary stomy? Should i do the least invasive methods possible and wait and see or should i go ahead and take my chances on a stomy?

Its only been like this for 6 months but those months have been the worst in my life so far.

Any advice would be highly appreciated.

[justadildo]

go to search....key in colostomy......we have more than one ongoing discussion right now with all the answers you seek and many different opinions....

[CapnGimp]

I'm a T4 complete. I have had those same pains that you describe from the beginning. With me it's phantom pain as I CAN'T feel there, it's below injury level. I equate it with having a corncob with 6 inch nails stuck in my butt, and the pressure is like someone sitting on you. Believe it or not, I FINALLY got 'used' to it. It is like all the other pains, they become more bearable with time. I just tell myself that I CAN'T feel it, so it REALLY is not hurting, and go on doing what I'm doing. It's a bull-headed response that will overcome a lot of this crap. I do the same for the burning, look down don't see any smoke- therefore, there can't be a fire,lol.
I think, like you do, that it is our bowel's messed up response to being full. As, on the days when it is worse, there is usually much more p00p to be removed. I don't use any suppositories(they made the burning MUCH worse) or stool softeners(I'm a vegan, don't need them) and do a twice a day(morning, evening) 2 minute bowel program- go fishing for what's there and go about my day. I have been doing this since 4 months into my over 10 year sci.
All this is to say, I wouldn't have a colostomy. Eat a diet with the PROPER amount of fiber and drink plenty of water. Avoid caffeine. Don't overeat. Avoid refined foods, eat wholegrain foods. If there is stool in your rectum, remove it. Train your bowels by doing a morning-evening evacuation without any suppositories, laxatives, softeners etc. It will work just fine. Especially since you indicated you have some function and are incomplete injury.
The more natural you treat your body, the better chance it will have recovery. Best of wishes, avoid those who wield knives and pills

[Tarkus]

Originally Posted by Snotty33

Hello!

My main trouble at the moment is that it seems that my bowel reflexes are not functioning as they should.

It seems to me that the pain is related to stool that "fills" my rectum, it feels like a "pressure" and a burning sensation, this gets worse when i sit.
Its more or less constant, with periods that are without pain (think this is when there is little or no stool in my rectum).

This pain is totally disabling and its very stressful to "know" whats causing it, knowing that some vital part of your body doesnt function.

Still im only 8 months post my operation so i still think i have some time to recover some function. A few times when ive been walking ive actually felt some "urge" (been awhile now), i guess thats maybe a reason to let more time pass before i do anything.

It seems that its "only" the bowel refelxes that are afflicted, cause it gets down there in time but stays there too long and causes nausea and pain in the lower left are of my stomach and around the rectum area.

Doctors wont do this operation at this time because they think that i might get phantom pain. So im on some irrigation schedule but that doesnt work very good and actually causes pain which in my opinion cant good for my rehabilitaion process.

In my opinion i think that my rectum and bowel reflexes need to be left alone without invasive methods that causes pain to recover as much as it can do.

For the moment i have no such method that works. So my question is what should i do? Should i have a temporary stomy? Should i do the least invasive methods possible and wait and see or should i go ahead and take my chances on a stomy?

Its only been like this for 6 months but those months have been the worst in my life so far.

Any advice would be highly appreciated.

I'm right there with you my friend. I have the same exact problem .

I will tell you now 24 mo. after injury it's better than it was at 8,10 12 mo. etc.

As stated do a search on colostomy and read on.

I have studied up and will use it only after I am as sure a sI can be that it would stop the pain.

Is this a CES caused problem ?

Alan

[firesmurf]

i do feel for you snotty,now that has to be one nasty type pain.i have bowel issue too since my SCI,mine doesn't want to move anymore either.while I drink TONS of water everyday and use a stool softner(which I think after the past three years has actually completely stopped working)but the one thing that really helps the most is massage.do you still have full use of your hands? if so,try just palpating around the abdominal area and massaging from right to left and then up and down.this does work much better with lotion? i have to do this like everyday at some point or things will get really backed up and also extremely painful.

like the others have stated,since you are still pretty early in your recovery,and for other reasons,i wouldn't go the ostomy route unless you absolutley have to really.the thing is,you still need to keep things actually moving thru that area in hopes that eventually,after more time has passed,things or at least some things,will become at least somewhat normal again.you know what I mean?its kind of like stopping the use of a specific muscle,it wont get better only worse when you don't use it all the time.by keeping things "going' thru that area,well hopefully you will still have some sort of 'gain' yet.

have you tried something like prep H for some of the pain,i know they have that applicator which helps to get the cream a bit further up.i don't know if this would even work or how far up that pain goes,just a suggestion for you.

just exactly what is the extent of your injury and what has been affected other than the bowels?hopefully over time,this will get better for you,or you will get more 'used to it' i have found that over time,you really CAN get rather 'used to" certain pains and sensations.espescially when they are there constantly.i think the brain helps with that.there must be some sort of "accomadation' that goes on up there over time(its showing at least a little mercy on us poor souls).unfortunetlyhealing from this kind of thing really does just take alot of time.my neuro told me even before the surgery that resulted in my major damage that we were going to be looking at a minimum of at least a full year for my recovery.that one scared me a bit.so just try and go with the flow as much as possible and for the really bad stuff,speak with your docs about all your options and if any pain really needs to be adressed,see a good pain doc,believe me,they can work wonders with the right modalities and meds.good luck snotty,Marcia