Crohn's...colitis...ibs...help!

[Easton]

I give up. I don't know what to think anymore.
In the past I have had a few different 'episodes' regarding my stomach/bowels such as bad reaction during/after labour (reaction to drugs), long lasting 'stomach upsets' etc but other than that...nothing much.
Last year I became aware of pain/discomfort near bottom of my left rib and later my shoulder. Gp said possibly gerd. Medication helped. Stomach became increasingly worse, gripey, d, pain, windy, heartburn etc bloods done showed raised inflam markers. Gp said could be Crohn's! Advised to go private as waiting list was so long. I did. At this point I was suffering with mouth ulcers, thinning hair, very tired, very tender stomach, d episode about once a week. Doc said he agreed with gp and should have scopes.
Waited 8 months for colonoscopy.
In meantime gp treated me with prednisone (which wad awful) when I was really feeling rough and then salofalk. Salofalk subsided symptoms. Off for a while symptons returned so back on salofalk.
Whilst feeling quite well I hade colonoscopy, results nornal. Barium swalow also normal. Gp said biopsies were normal too apart from microscopic colitis (not sure if that was what he thouhht rather than results. Gp concluded that it was colitis that I had but its all cleared up now. He's pretty convinced that it is ibd. I am at a loss.
To top it off my stomach has been upset all week.
D can be ubearablly painful and explosive but short lived. Only once had a bit of blood.

Sorry about the essay but I really am at a loss...which is it?
Please help xxx

 

[Easton]

Also recently sufferig with very stiff joints mostly knees.

 

[ronroush7]

I didn't think that Colitis could just go away. I am no expert. Is there anyone that can help?

 

[my little penguin]

Two things can you get a referral to a rheumotolgist
Spondyloarthritis can cause minimal gut inflammation ( not enough to be called crohns)
But still there
Second if you were on pred that could have treated your ibd and made the colonoscopy look normal - how long were you on pred and when did you stop it prior to the scope ?

 

[Mickyaela]

Can you double check the biopsy results with your doctor if you're not sure what the results actually were ? Microscopic Colitis whilst less severe than crohns or uc is still an IBD.

 

[john confused]

I hope you can get to the bottom of it Easton.

I had similar difficulty getting diagnosed. I was always sick with stomach issues etc for years. Blood tests were generally always good but was diagnosed with Mediterranean anemia but my doc said nothing to do for it. I suffered from join pain, tired all the time and rapid heart rate so had every heart test imaginable and still everything was negative.

9 years ago I became so ill with stomach pain that was so severe, it hurt to just walk across the floor. My weight dropped from 135 to 118 in a few months. I went thru every xray and scope the doctors prescribed. Colonoscopy showed nothing. My iron levels dropped and my hemoglobin levels dropped to 4 when the doctor finally hospitalized me. They did 1 CAT scan and found crohn's disease in the ileum. Finally I had a diagnosis and a course of treatment.

 

[Easton]

Two things can you get a referral to a rheumotolgist
Spondyloarthritis can cause minimal gut inflammation ( not enough to be called crohns)
But still there
Second if you were on pred that could have treated your ibd and made the colonoscopy look normal - how long were you on pred and when did you stop it prior to the scope ?

Thanks for the reply : )
I was on pred for about 10 weeks but that ended about 3 months before scope. Symptoms had started to returned which is why I was on salofalk, again finished salofalk about 3/4 weeks before scope. The joint pain is a recent thing. It's frustrating but I guess I will have to wait and see what happens next...
I really appreciate your response, thanks x

 

[Easton]

Can you double check the biopsy results with your doctor if you're not sure what the results actually were ? Microscopic Colitis whilst less severe than crohns or uc is still an IBD.

Hi, thanks for reply. GP was vague but said biopsy looked clear but could microscopic colitis? ? My Dad's mum had colitis and gp hadn't really mentioned it before.

 

[Easton]

Also when original bloods showed raisedinflammatory markers the albumin levels were quite low. After meds, inflam waa reducedand albumin was back up.

 

[Easton]

I hope you can get to the bottom of it Easton.

I had similar difficulty getting diagnosed. I was always sick with stomach issues etc for years. Blood tests were generally always good but was diagnosed with Mediterranean anemia but my doc said nothing to do for it. I suffered from join pain, tired all the time and rapid heart rate so had every heart test imaginable and still everything was negative.

9 years ago I became so ill with stomach pain that was so severe, it hurt to just walk across the floor. My weight dropped from 135 to 118 in a few months. I went thru every xray and scope the doctors prescribed. Colonoscopy showed nothing. My iron levels dropped and my hemoglobin levels dropped to 4 when the doctor finally hospitalized me. They did 1 CAT scan and found crohn's disease in the ileum. Finally I had a diagnosis and a course of treatment.

Hi John, sounds like a rough ride! Thanks for replying. I had a bariun swallow which was 'normal' so I assumed that would show any Crohn's further up...is that right? Its frustrating but I am glad you got diagnosed ib the end. Out of curiosity how are you now? Thanks

 

[DEmberton]

You went private and it still took 8 months to get a colonoscopy?

It does sound plausible that the drugs worked and because you had the tests whilst feeling well they didn't find anything. Which is a bit dumb. My colonoscopy didn't show anything conclusive, just some mild inflammation but it took a CT Scan to see what was really going on.

I hope you can get some answers.

 

[Mickyaela]

Hi, thanks for reply. GP was vague but said biopsy looked clear but could microscopic colitis? ? My Dad's mum had colitis and gp hadn't really mentioned it before.

My biopsy results were very clear to the gastroenterologist. Have you had a consultation with the gastroenterologist to talk about the results and next steps? I'm not sure why the GP would be interpreting results.

 

[Easton]

Well I paid privately to see consultant in the first instance (he suggested Crohn's based on bloods, symptons etc) then went on nhs for procedure as it was thousands of pounds for colonoscopy. I had no choice but because of the way it happened I never saw an nhs consultant just the one that time privately and on the day of my scopes but never an apt with him to discuss anything.
Its like everything was done backwards...treated before diagnosis then scope just after treatment. Frustrating.
: (

 

[Mickyaela]

Well I paid privately to see consultant in the first instance (he suggested Crohn's based on bloods, symptons etc) then went on nhs for procedure as it was thousands of pounds for colonoscopy. I had no choice but because of the way it happened I never saw an nhs consultant just the one that time privately and on the day of my scopes but never an apt with him to discuss anything.
Its like everything was done backwards...treated before diagnosis then scope just after treatment. Frustrating.
: (

Maybe you should now get an NHS referral to a gastroenterologist and take with you all your results.....

 

[Mommason64]

I would ask your GP for a copy of the pathology report. They are very clear and precise to read. If it says Microscoptic colitis then it is. There is no gray area to it, I work in a GP office and see these daily. I would guess it mentioned that in the results, that is not something that can be diagnosed any other way than by biopsy. There are two forms one involves BD and one WD. Ask for a copy of it and then call a Gi and set up an appointment the stress of worrying what it is will only make your symptoms worse!