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Crohn's Disease Forum » Support Forum » Undiagnosed Club » I'm new and in need of advice...


05-24-2014, 04:27 PM   #1
MrsMoore
 
Join Date: Feb 2014
Location: Pevensey east sussex, United Kingdom
I'm new and in need of advice...

Hi everyone, Im new to the forum but I have been reading all your post for a while now so have finally been brave enough to join in. Im am undiagnosed at present, hopefully getting a bit closer..

Ive had problems with my stomach since I was 14, had a bad case of Right sided abdo pain which resulted in my appendix being removed, my appendix where fine and the pain carried on. Suffered badly with consitpation all throughout my teens along with upper burning abdo pain like severve heart burn between my ribs, had a couple of OGDs one showed an ulcer and the other gastritis. Given omeprazole which helped the burning pain but not my bowels and the right sided stabbing type pain. By then my gastro gave up on me and thought the pain could be from cysts on my overaries so I was sent to see a gynaecologist, diganosed with endrometriosis had surgery and treatment for this, but still getting stabbing pains.
Every once a year I would get a flare up of the burning heartburn pain which would end me up in a&e having morphine and blood tests, nothing showed up apart from a mildly elevated CRP level. On one of my admissions they decided to refer me back to gastro as I was now having problems with consitpation and watery bowel movements and extreme fatigue, I asked for a different doctor to perviously. Went to see this doctor and he reviewed my history and bloods etc and noticed my CRP was always high when I had these problems, he requested more thorough bloods and my b12 and folate came back really low, so I had a colonosopy (at the time I was symptom free) which was normal, an MRI which said there might be possible changes to the terminal illiuem. I was then sent for a capsule endoscopy which came back normal as well. Still having these symptoms my gastro sent me to dietitan and I tried the low fodmap diet which was no help, one day something would trigger me, the next day it would be fine.
Recently my gastro asked for a feacal calprotectin which came back at 85 (slightly elevated) so he requested another colonoscopy. This time it was horrible, I was having symptoms during this one, I could barely keep down the prep had to rely on anti sickness tablets to ingest it and during the procedure it was incredibly painful, he said he was unable to pass the scope into the terminal illieum and it was causing me the stabbing pain I have experienced most of my life. He said it looked like there may be some inflammation there but could only biopsy the surrounding areas which is frustrating, they came back as normal...
anyway I am now waiting for an MRI scan on the 30th may and the IBD nurse said they will try me with some crohns med's after that, they began with a 'B' but i was a bit out of it from the sedation so I cant really remember.
Has anyone else had a similar experience to me? I guess so being as there is an undiagnosed club!! I dont want to have anything wrong with me but I have been fobbed off with stress and depression for years now Im so frustrated. Also Im so tired all the time, I am up all night in the bathroom some nights!!
Has anyone else gone on crohns med's when they cant see where it is properly and did it help?

Sorry for the long post thanks for listening xxx
05-25-2014, 06:09 AM   #2
Daisy123
Senior Member
I suspect the medication is budesonide which is a type of steroid, the only other thing I can think of is buscopan, which helps relax the bowel.
05-25-2014, 08:03 AM   #3
MrsMoore
 
Join Date: Feb 2014
Location: Pevensey east sussex, United Kingdom
Thank you daisy123, it must be budesonide as I've had buscopan before. Have you any experience with this medication?
05-25-2014, 08:11 AM   #4
Daisy123
Senior Member
Thank you daisy123, it must be budesonide as I've had buscopan before. Have you any experience with this medication?
I have, it isn't as harsh as prednisone and hasn't as many side effects. It is meant to be absorbed better. It is the first level treatment and usually works very quickly.
05-25-2014, 08:39 AM   #5
MrsMoore
 
Join Date: Feb 2014
Location: Pevensey east sussex, United Kingdom
That's good to know daisy I have heard about the horrible side effects of pred. I'd be willing to try anything! I have to wait until the MRI scan next week to see what that shows I think they are expecting to see something after my colonoscopy. I bounced back so quickly after the first one and I'm still feeling terrible from the latest one, that bowel prep is just dreadful!!!!
05-25-2014, 08:51 AM   #6
Daisy123
Senior Member
Colonoscopies can be dreadful if there is inflammation. And prep very hard. I always have Picolax which I tolerate pretty well but I am lucky I don't get a great deal of vomiting with the crohns, mind you that might be the anti sickness meds I take all the time. I hope that are able to start the meds soon and feel better soon.
05-25-2014, 09:13 AM   #7
MrsMoore
 
Join Date: Feb 2014
Location: Pevensey east sussex, United Kingdom
Thank you it's nice to talk to someone that knows what I mean!! I thought I was being a wimp as my first one went so well. I take domperidone for sickness now which helps but I needed cyclazine to get me through the moviprep!
05-25-2014, 09:33 AM   #8
Daisy123
Senior Member
I had the moviprep once but I found it horribly difficult. It might be worth asking for Picolax instead next time. Not so much to drink, I found it easier. When I was diagnosed, there were no online forums, it is great that sites like this exist. If I can help it gives some sort of meaning to the last 30 years. Feel free to ask me anything.
05-25-2014, 11:01 AM   #9
MrsMoore
 
Join Date: Feb 2014
Location: Pevensey east sussex, United Kingdom
Thank you if I think of any more questions (I think of loads) I'll ask it's such a confusing time I just wish they would find something so I can get on with managing it!!
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