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Wife of undiagnosed ibd sufferer!

wife of undiagnosed ibd sufferer!

Hi all. I'm Mel, wife of Johnny (and personal secretary). Been together 24 years and unfortunately, we both assumed he had ibs all this time until Nov 7th 2011. After being in bed for 5 days with one of his episodes, actually went to Drs!!!! I packed his bag for hospital because he looked like death!
Dr suspected appendicitis. Me being my usual know all self, was sure it was more than that.
Johnny was admitted for emergency surgery for removal of appendix. I was still sure they got it wrong.
After surgery, consultant said perforated appendix but could see 'something else going on' and he would have to stay in for a couple of days and have ct scan.
He was so yellow and his tummy was distended. Johnny didnt seem too bad to begin with but every time he ate anything he was in so much pain. He had ct scan at 9.50am 11.11.11. He was on table by noon! 7 hours later he came out of recovery. He had 45cm of his small intestine removed, the illieum.
He was very lucky not to have colostomy, although in hinesight it would have been better!
Consultant told us 99% sure it was crohns. Everything made sense now. Actually felt guilty for not realising years ago! Started to improve over next few days but I was still so worried. his belly was still bloated and he hadnt eaten hardly now for 9 days. He still had temp too.
They said he could go home 18.11.11. I didnt feel comfortable with this as we live 20 miles from main hospital and I don't drive.
We asked consultant for ct scan. He agreed that something wasnt quite right and ordered scan. Meanwhile Johnny had to get his head round staying in hospital for a few more days... He was angry with me for saying anything, he just wanted to go home!
Scan at 4pm. Surgical registrar turned up at 7.15pm told us Johnny would be having colonoscopy first thing in morning due to another abcsess on bowel. We were devestated. 5 Hours earlier we were going home allbeit nervously.
Whilst surgeon explaining procedure to us he takes a call from Johnnys cosultant.
'Change of plan' he says. Your consultant thinks you're fit enough to cope with a drain instead.
He had just spent 10 mins telling us that drains didn't work very often and they were a waste of time!!!
Johnny came home 28.11.11. weighing 9st 5lb. he weighed 11st 7lb
Went back 10 days later was told good news , haven't got crohns , histology report was inconclusive! Had drain removed. It did seem to do the job however, night sweats started pretty much straight away. Back on anti biotics week later with infection.
On anti biotics again now. Been bleeding pretty much 70% of the time. Had colonoscopy 10.01.12 Still not got results. Dr said consultant reported inflammation and narrowing.
Johnny is supposed to eat 6 times a day due to shortened bowel syndrome. He's a vegetarian who doesn't like rice or pasta or vegetables. He's also been put on a low residue diet from the dietitian as she thinks he has crohns!!!
Before all this trouble, cheese was his main diet, well, food made with cheese I should say.
Everything he eats causes either diarrhoea or lower abdominal pain within 30 minutes. He's been having a fortijuce every day too. I think without that he would have lost more weight. As it is he has only lost 1lb since he came home. He can eat jelly babies and wine gums without much pain.
So much for a short intro lol!
Positive feed back please, having a bad day!!!
Now on third lot of anti biotics
 

Angrybird

Moderator
Hello and welcome to the forum. That is a lot to have happen in a short amount of time! Based on the surgery and the inflammation and narrowing on the recent scope I would be extremely surprised if they then said he doesn't have crohns. Have you been given a date for a follow up appt with the GI? If not Iwould start chasing the hospital tomorrow and get very insistent until they agree to get one sorted asap. Also when you say low residue diet does this mean certain foods or are there some shakes he has been given as well? If not I would ask about this as they have the nutrients etc he needs and may even help with some weight gain. Apart from anti biotics is Johnny on any other meds? I do hope things improve for Jonny soon, please keep us updated on how things are going :hug:
 
Hi angrybird. Yes he received follow up appointment.... 21.03.12! Needless to say, I have already phoned and made it quite clear he annot wait until then. He now has an appointment 08.02.12.
He has omeprazole in morning and metoclopramide still. he has buscopan when needed and pain killers.
wont give him meds until diagnosis!!!
complan really doesn't agree with him so he just has the fortijuce each day. Low residue is low fat low fibre so basically PANTS!
I will put regular posts up.
Thanks for reply.
 

Angrybird

Moderator
I am glad you were able to bring the appt forward, that original date was an absolute joke! I agree the diet is not really going work so well when things are still in uproar, this will be more beneficial once things have calmed down. I have seen mention on another thread about Psyllium husks which was found to be very helpful for the sortened bowel syndrome, I think these are available in health shops, perhaps worth looking into? Will keep an eye out for updates, I really hope they do a proper job and sort things out. Do not leave that hospital on the 8th until you are happy with what has been decided for future treatment. Sending hugs and best wishes to you both :hug:
 

Jessi

Moderator
O wow, Mel. You two have been through so much recently. My heart certainly goes out to you both. :hug:

There are others here in a similar boat as yourself. All the red flag signs are there, but pathology labs show that it is not Crohn's. It doesn't make any sense to me. Inflammation and narrowing are great indicators, I thought. I really hope they can figure it out and get Johnny on a good treatment plan. And soon!!

Please let us know how the appointment goes next week. :) Good luck
 
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