Big Rant

Crohn's Disease Forum

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Joined
Aug 14, 2009
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Hi I am new to posting
My wife has crohn's and has suffered so badly over the last two years.She was diagnosed six years ago with U/C and for the the last two years I have been banging my head telling the medics that she has crohn's.Well after being admitted with cronic abdominal pain they removed her Gall bladder.She was released but went down hill from there and was re addmitted and kept for over three weeks.She lost 2.5 stone and started showing signs of mental health issues.They found a tumor that turned out to be benign (thank god ).They gave her Infliximab which sent her blind in one eye.Retro bulba neuritis.The neurologist said it was not the drug and we should carry on it only effects 0.7% or 9 people in the world.The Gastroentarologist said no way .She had another stay in hospital and I persuaded her to consider surgery.The consultant said ok thats fine and got her in just before christmas (last ).This was to remove the transverse colon about half a metre.This was done laproscopically.The operation went to plan,However two hours after she went down hill fast and the surgeon called at home to return asap.When they opened her up ( this time with no messing )they found the main artery in her leg was gaping and she lost 97% of her blood.She stayed in ITU for four days and had problems with her circulation in her leg.We went back two weeks ago ( so three months post op ) and she described how ill she feels and said could the crohn's be back.He stated that she would have to be the most unlucky person in the world.Guess what !its back now just inside the back passage.She is a serving police officer and now they are trying to medically discharge her as she has had 18months off.Hope you understand why i am ranting thanks Dale (loyal husband)
 
Welcome Dale

I feel bad that your wife and you are going through this. I do hope that she does start to recover and feel better soon.
 
Thanks Jen
I think the best would be a complete removal and colostamy bag but how can I suggest this now.
She is terrified of surgery after what happened
This disease is sucking the life out of us all
 
I know that this is a very difficult time to go through. I do not blame her if she has any anxiety about surgery. I think that it is helpful to anyones recovery though when they have supportive family and friends around them through the difficult times.
 
Hi Dale...sorry your wife is going through this! I have a colostomy bag, and it's been the best thing that's ever happened to me. My quality of life has increased 200 fold, easily. I'm not recommending that your wife has this procedure, but if she does, any questions you have I'm more than willing to answer. There's a stigma attached to having a bag, but once you get over that with the support of your family and friends, it's quite bearable :) You sound like a supportive person, so I don't think she'd have a problem if she wanted to go this route.

Good luck to you both...
 
I had a temporary colostomy and once I got over the stigma, it really wasnt that bad. I could totally do it again if I had to. Lots of people get their lives back after an ostomy. I could understand being afraid of surgery. I am afraid of needing surgery too. Fear and this disease seem to go hand in hand. She is lucky to have you by her side.

I am sorry she had a bad reaction to all the drugs. Thats terrible luck. With this disease the statistics mean everything to the group and nothing to the individual.
 
Hi Dale
and welcome

This is so sad, I'm so sorry this has happened, but with your love and support, which is very important, your wife is lucky and not on her own, I wish you both luck with a very hard decision and Nyx has a wonderful, inspiring positive attitude which will keep me going when the time comes if ever I need a bag.
Lots of friendly people here for you, vent away, we'll always listen
sending big hugs
Joan xx
 
Welcome Dale! it is always nice to see a supportive partner on here. i am so sorry for what your wife has gone through. i hope that she finds relief soon in one form or another and that your family can get back to normal (whatever that means). Sending warm thoughts your way. You have come to the right place for advice and support.
 
Welcome Dale! Lots of love to your wife. You are so great to come on the Forum and find some support on her behalf. There are lots of knowledgeable people on here to answer your questions, and even more of us just here for moral support!

You two have been thru a tough time. Last year when my hubber had some heart trouble (at age 36!), I found out just how hard it is to be the spouse - it's much easier to be the sick one in many ways. When we take those vows and say "in sickness and in health" we don't realize just how much that means.

Good luck with everything - please come back and let us know how she is doing.

- Amy
 
Hey Dale,

Welcome to the forum!

So very glad you found us and felt you could post to let us know what is going on!

Although we cant take the problem away for you both we will always listen carefully to anything you want to post and ponder it with you.

IBD can mean running a gauntlet as you both know and to have come so far as you both have is phenomenal in itself.

Please let us know how things are and what you have decided. Give our healing thoughts to your wife and let her know we are thinking of you both.

((hugs))
 

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