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Has anyone on here got less than a metre of small bowel left please.

T

Trish22

Hello I hope I can get a little support on here, had to have more major surgery last July, have now only got 1metre of small bowel left, I am devastated, the surgeon did not even tell me he was removing this much,even did not tell me whilst I was in hospital, I discovered it on my discharge letter.
so far I have only had problems with magnesium deficiancy,I have hypomagnasemia,the only thing that helps and keeps it up is magnesium oil from Holland and Barratt, boy I would be in a mess without it,but it costs 12.95 a bottle.
Anyhow last week after eating two bananas with my cornflakes,and making a banana cake and I will be honest I did eat quite a bit of that which I now feel was terribly undercooked,the next morning I developed really bad bowel pains which I have had all week, I have managed to get in and see a Gastro who has ordered a urgent MRI,my bloods all came back normal, he said he cannot feel any lumps,but who knows what it is he said, I am so frightened,I usually am really good with my diet being low residue, I just strayed a little and this happened, I am scared I have another stricture, they have told me no more operations because they will not be able to sustain me or I will not be able to sustain myself if it comes back.i am living in constant fear.is there someone out there please who could help and advise me, surely I cannot be the only person with this problem. by the way I have Crohn's disease, it has caused me so many problems,there are two many to mention. Thank you
 
DJW

DJW

Forum Monitor
Hi Trish. I've got just over a metre and they don't want to do more surgery. They reluctantly operated last may because of a stricture. 2mm opening was giving me weekly blockages. I'm now being aggressively treated to prevent more surgery.
Your not alone. Sending you my best. Let my know if theirs any questions I might be able to help with.
 
T

Trish22

DJW.thank you. For your reply

DJW said:
Hi Trish. I've got just over a metre and they don't want to do more surgery. They reluctantly operated last may because of a stricture. 2mm opening was giving me weekly blockages. I'm now being aggressively treated to prevent more surgery.
Your not alone. Sending you my best. Let my know if theirs any questions I might be able to help with.
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OMG thank you so much for getting back to me, I feel in a desperate position here,I eventually managed to get emergency appointment on Tuesday,he said only take Paracetomol (Tylenol) I think where you are.i know and can feel it's another form of stricture, good thing is I am not feeling sick,it's just a persistant pain on my right side,am awaiting an Urgent MRI and colonoscopy,although the waiting lists in this country are getting longer ,so don't know when that will be, I feel so scared,they tell me that they have are there list some people with much less than a metre of small bowel and they manage, but the surgeon really worried me when he said no more surgery has we would not be able to sustain you and you will not be able to sustain yourself,this is playing on my mind terrible,I know I should,nt let it, but with this happening,it's terrifying.i have been on Infliximab a couple of years back (remicade) and I think they may try me on Humira.This pain I am getting is really pulling me down,although all my bloods are coming back completely normal CRP less than 1.
 
DJW

DJW

Forum Monitor
Hi Trish. It was constantly on my mind in the beginning but the anxiety has subsided. I have heard of people living with no intestine but I don't want to join that group. I'm starting remicade in the next couple of months. I really hope the test yield a solution.
Hugs and best wishes.
Dave
 
T

Trish22

Thanks, just waiting for an MRI and colonoscopy now, all my bloods have returned back as all normal and my faecal test in case of infection as returned back normal,which only suggests to me another stricture forming,it's just so uncomfortable this pain,it really affects my anxiety levels,Paracetomol which the Drs said take,does no good whatsoever,it's trying to pass wind that's the main problem,I think it's affecting this normal procedure quite bad and I think that's what is causing the real bad pain.Its good that I have someone in the same situation as myself to confide in. thank you so much.
 
DJW

DJW

Forum Monitor
Hi Trish. I wish I knew of some magical fix for you.
Has the doctor give any indication how this might get fixed without surgery?
Please keep me posted. PM me if you prefer.
Dave
 
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