Newbie - Undiagnosed - help/advice!!

[Vic]

:angry-banghead:Hi,

I'm a newbie been reading lots of posts and although i got to the point about a month ago of complete frustration i've calmed down a bit now and just accepting that im getting nowhere fast, but despereatley want a diagnosis...

Over the last 10 years been told I have IBS linked to anxiety and stress and suffered from periods (although) short of diarrhoea then at the end of February 2011 I started with abdominal cramps, pain, diarrhoea, very swollen stomach after eating etc.

March went to see doctor - possibly celiac, stop eating wheat gluten, take Imodium, blood test, possibly IBS. Imodium did nothing, nor buscopan or not eating wheat. Blood test negative for celiac vvUrgency to go to the toilet getting worse, watery, extreme pain, swelling, started losing lots of weight, fatigue, vomiting, aching.

Went to and fro to the doctors had lots of blood tests to confirm no infection possibly ME, IBS, referral made to gastrointestinal consultant for colonoscopy - possibly IBD. Prescribed Lansasoprole for Gastro Oesophageal Reflux which got better with that medication.

22nd March went sick from work

All symptoms getting worse, lost around 2 stone in weight, struggled to eat anything

3rd April - admitted to Stafford Hospital for one week

Suspected IBD
Battery of blood tests
Normal abdominal x-ray
Kidney and Liver function normal
Low ESR
Very low B12 and B
Endoscopy normal and Colonoscopy normal
Biopsies taken

Given Morphine, Gaviscon, Buscopan, Imodium and referred for Barium Follow Through test and Ultrasound and discharged.

Got very depressed, anxious

April - Ultrasound

May - Barium Follow Through

15th May went back to work for 3 to 4 hours a day

9th June - results from colonic biopsies would diagnose Collagenous colitis, however, results from barium follow through not normal and would diagnose Crohn’s disease near the terminal ileum (indicative of separation of loops of the bowel and thickening near the terminal ileum although not seen on colonoscopy)

Referred for Barium Capsule for clarification of previous results

Prescribed Mesasaline which had no effect

16th June Prescribed Prednisolone which has had effect BM now only 3 - 4 a day and much more solid. till suffering from some previous symptoms and suffering from side effects of the preds - anxiety, nervousness, unable to sleep, manic, yet tired

Saw Occupational Health at work Ms Byrne at HMP Stafford, started going through history and broke down

24th June - went sick from work sleep deprived etc due to side effects of steroids prescribed diazepam at night to sleep

21st July - Pill Cam Capsule Endoscopy - waiting results

Diazepam has made me dead depressed and cry loads so just come off that and really had enough but going back to work in three weeks, sorry to go on and so much detail but becoming so obsessed with it all and frustrated!!!!


Any help/advice???????????????? Please!!!

 

[Grumbletum]

Hi Vic :welcome:
Glad that you have found us all here, but sorry to hear that it is Crohn's and about your long road to diagnosis. Unfortunately that is quite common and a lot of us have been down it too, some people being still undiagnosed.
But it sounds like you are almost there? Hopefully when you get the results of the latest tests, they'll be able to get you onto the right treatment to get things under control and maintain them that way.
Hang on in there, buddy! And let us know what happens when you get your test results.

 

[Vic]

Thank you, its so nice to read some of the posts on here it makes me feel like im not going mad, i think everyone around me must feel like im becoming really self absorbed and i've felt like im going mad literally for the last months so to talk to others who have had similar and much worse experiences :-( (who i really feel for) really makes me feel so much more hopeful and that there is a light at the end of the tunnel!!!

 

[allieinwonder]

Welcome to the forum!

I'm sorry you have had such a hard time with your health and trying to figure out what is wrong! I am currently undiagnosed as well. We have a club here, called the undiagnosed club, in the support section of the forum. We all vent and help each other trying to figure this all out.

I hope your pill cam showed where you are having issues! IMO it sounds like it should help you in the fact that you have low B12 - that would happen if you have crohns in the small bowel since it would affect how you absorb nutrients. My doctor thinks my crohns is in the small bowel as well, and I am also having a pill cam very soon. Pill cam is a very good way to get a diagnosis when your small bowel is affected since the scope can't reach. You are not alone!!

 

[Vic]

Hi, thanks,

I really hope the pill cam shows something up to dont know whats next if it comes back normall! the prednisolone is really helping but having awful side effects. My consultant thinks its crohns and so do i but then i have days where i dread the results coming back normal.

It sounds like yours is terrible I dont have any blood at all, that must have been frightening for you

I cant believe how difficult it is to diagnose and how long it takes!!


whats nortriptyline?

 

[allieinwonder]

Thats great that they have you on something in the mean time! Nortriptyline is an antidepressant. They use it and amitryptiline in low doses to slow down the bowel and relieve chronic pain. I was on amitryptiline at first, but it didn't help, and the nortriptyline isn't helping very much either.

Not everyone with crohns gets blood, so don't feel like you have to have it to have crohns or IBD. I sometimes get black stools, but mostly I get a reddish mucous that comes with my BM's.

By the way, we don't really think of TMI here...we say what we need to!

 

[Vic]

thanks for helping me feel normal then! i think im just so used to people thinking (or it could be my own paranoia) that i talk too much about it or go in to too mich detail. I'm on sertraline as an antidepressent, only been on that one for 8 months ish prior to that i was on citalopram for about 4/5 that. I have really bad mood swings at the moment which i used to have a little anyway but now its so much worse e.g. i know i can feel myself want to go off on a tangent about something with someone close to me or say something which i know is irrational and will hurt them and if i can just not say anything in a few hours or a day i'll put it back in perspective and think what the hell were you going to say that for! and im now putting it down to all the tablets...... I know i must sound mad!!!!!!!