How do you feed when you have your large & small bowel removed?

[donna.tennant22]

hi everyone, just wondering if anyone can give me some advice?
I have crohns and had all of my large bowel removed 5yrs ago, and have a colonoscopy bag now.
Now it seams the crohns is returning, i am concerned because.. Last time it was bad i was unable to tolerate any of the drugs hence having the large bowel removed.
If i can't tolerate the drugs again this time, i have been told that surgery will be a last resort as it will mean i won't be able to have normal food ever again/
so how will i eat?? Will it mean a peg? Or ng tube?
Will it be liquid foods? Or normal food purified?
Its all very frightening
i could really do with any help or info
so if any of you guys can advise me in any way i'd greatly appriciate it
thanks

 

[chrisnsteph1022]

There's a guy on another Crohn's board that doesn't have enough intestines left to absorb anything. He's on TPN for like 12 hours/day (overnight) for life. That's not ideal, because eventually it can cause liver (I think) failure, but it's his only way to get what his body needs. I think he can still eat for taste, but nothing gets absorbed.

 

[tiloah]

First off, welcome to the forum.

What drugs have you tried in the past? Why were you unable to tolerate them? Hopefully there are more/different treatments now and they will be able to find one that you can tolerate. Or maybe you could try an investigational drug?

Do you know where in the small bowel your Crohn's is becoming active again? Usually Crohn's presents with "skip" lesions so if they did end up doing surgery, it would hopefully not be your entire small bowel, which would allow you to stay off of TPN (though you may need supplementation).

I hope you are able to find something that works for you. There's a lot of information on this forum and you should check it out.

 

[Carrie630]

my cousin lost nearly all of her bowels (not from Crohn's - unrelated accident) and she was fed by a port into her side. I never saw it so I can't tell you exactly how it looked. When she first lost her bowels, she couldn't drink or eat anything at all and got all of her nutrition from her side. Eventually they were able to go in and connect stuff up such that she could take in clear liquids. She only had 12 inches of small intestine left. If she had had more she may have been able to eat a little more. She was able to eat soft stuff like jello and ice cream, but nothing that required digestion to break down into passable pieces.

 

[donna.tennant22]

thanks for the replies,
i was unable to tolerate every drug they gave me last time, just because i seamed to get every side effect going, which on top of the crohns made me really ill. (vomiting high blood pressure, voilent headaches and so on )
i am probs getting way ahead of myself this time round, as yet it hasn't been confirmed that the crohns is back,i've seen my g.p who has sent a sample away to see if its just a tummy bug, but i don't think its just that, the pain is the same as crohns pains, and are every time i eat, also the output from my stoma has just been pure water!, and you sometimes just know these things.. all the symptoms are the same as last time i had it.
i don't know where or how much of the small bowel is affected, i just know it can't be my large bowel as all that was removed the last time i had surgery.
and my gp says surgery would be the last option as if i have anymore bowel removed i'd never be able to have normal food again, she didn't go into detail about this.
if the sample comes back clear on tuesday i am going to be referred back to the consultant.