Fed up with no diagnosis

[Johno]

Hi,

This is my first post here. Reading the other posts has made me feel a little happier

I have been unwell for 14 months now with about 6 severe episodes.

The doctors have recently identified Diverticulars Disease in my Sigmoid which is where I get the pain. The annoying thing is that they dont think that is what is causing my pain and they dont think I will benefit from surgery yet.

I dont want to have surgery for no reason (who would)

The doctors think I also have, either, crohns or ulcerative colitis, with their preference being crohns.

I have had dozens of hospital tests, colonoscopys, small bowel study, CT scans, X-Rays and its really getting depressing now as I dont seem to be getting anywhere. I am going for a barium enema in a few weeks 'for completeness'

When I have a flare-up, my GP makes an appointment at the hospital for me but the waiting list is about 3 months so when they do the colonoscopy, I am feeling much better and it shows nothing other than the diverticulars.

Im just feeling so fed up with it this week, im always tired and just feel like crying

Sorry to go on but i needed to get it off my chest

 

[Guest]

hi Johno, & welcome.

firstly, being in the UK, it might be an idea to join NACC (National Association for Crohns & Colitis), & see if they have a support group in your area, or in fact just to get some info.

let's hope the barium meal shows what is going on.. and points the docs in the right direction.

i'm sorry its getting to you so bad, not surprising really but you're amongst people who really understand here.. so unload whenever you need to, and keep us posted re the results etc.

 

[GoJohnnyGo]

Hi Johno,

Damn right I believe it must be frustrating for you. Nothing can be worse than feeling that crappy with no confirmed diagnosis.

Feel free to continue venting if you need to, Many folks here have gone through/are going through similar situations.

 

[TummyTroubles]

Hey Johno

Sorry its so lame to get a diagnosis. I am in your same boat. I feel like crying about it often. I am just trying to focus on getting all the tests done to get a diagnosis. It sounds like you are getting close though! Not that its a good thing, but GOSH if u are having these problems it would be nice to have a diagnosis and be able to get the right treatment!
Good Luck

 

[Johno]

I recently had a blood test that showed anti-gliadin antibodies so had a gastroscopy for that, just waiting for the biopsy results. They said the blood test result was odd because I havent shown that before. I usually show very high white blood cell count and another which i cant remember.

It just feels like they dont have a clue and even when they do find something, they arent even sure thats whats causing the problem!

another annoyance is that they keep telling me to eat differently all the time, one month its eat fibre, next , its no seeds then its no fibre then they tell me to change nothing!

I have been prescribed Buscopan and Spasmonal, both of which do nothing. They tell me not to take any painkillers and they wont try any medication until they are certain whats happening

Its comforting to see how busy this forum is

 

[GoJohnnyGo]

Well, if it's any solace, a hasty diagnosis might do more damage long-term.

Crohn's is a tricky bit to confirm, and sometimes it's hard to blame medical people for exercising caution.

 

[Cheshire cat]

Hi there johno, I hope you get a clear answer soon and get the the treatment you need. I'm going through a similar thing at the moment so I know how frustrating the waiting game can be. Being able to talk about it with people going through the same thing has helped me alot, I sometimes feel like I'm about lose it and cry all the time to. There are some really wonderfull people on this site, I'm sure they'll help you to

 

[CazMc]

Keep your chin up Johnno I am in a similiar situation. Had a million tests done, they thought they had got something thru the colonoscopy but the biopsies came back not showing anything. I have been off work since Fri due to severe pain, nausea and not being able to eat anything. Seeing my Gastro on Friday so looking forward to what they have to say... NOT as I feel they will say they found nothing and that is it.

Caz x

 

[MINI Cooper]

YES! I KNOW the frustration all too well!!!!

Anything related to the tummy takes FOREVER to diagnose.
I got the old "oh, you just have IBS" thrown in my face
for years and years until I nearly died, had surgery and they finally decided
to take things seriously. And even then they gave up on making a diagnosis.
I got transfered to Stanford where they finally gave me one.

Unfortunately, you have to constantly battle with your doctors to get
the results you are looking for. It may do you good seek out a 'second
opinion' from another facility as I did. That's the only thing that was able
to give me a proper diagnosis. I've been through so many tests and doctors
I couldn't even count anymore.

I Wish you luck! Keep us posted!

 

[aarond]

Hi Johno,

Been there mate with the 'apparently' or 'i think' diagnosis and theres nothing worse.

I got diagnosed via Faecal Calproctein and pill cam in the end and it took approx 2 years, and it was horrible being stuck in limbo.

All I can suggest is definitely joining the NACC (not to mention you get the handy card when you join them to help with the toilet access), I take anti depressants and have done for years and also a councellor will definitely help. Even if its just to air your emotions it all helps and to be honest there isnt a stigma attached to councellors or pshychotherapists nowadays.

Hope things get resolved soon mate

All the best

Aaron

 

[Johno]

Hi,

Just had my barium enema today, at least I got to use the "friend or enema" joke!

They were really friendly but I have never known wind like it afterwards

My stomach was still sore after fasting which surprised me a little, I sort of expeced the emptyness to stop the pain.

Thanks for listening the posts are really comforting and I am now a member of NACC

 

[MINI Cooper]

Glad you made it through it

 

[catfud]

Congrats that it went ok for you