Could this be IBD?

[Birdybirdywoofwoof]

Advice sought please

I hope this is the right forum.

It's a bit long but looking for advice...

I had colonoscopy last year and biopsy revealed inflammation consistent with IBD. I then got scleritis (eye inflammation) and was put on prednisolone and have been on it for my eyes ever since. Over 1year! Blood tests for autoimmune eye problems revealed nothing but positive p-anca, subtests didn't reveal vasculitis according to the ophthalmologist. I've had raised ESR constantly for years and occasionally CRP too

Because I had what they considered reflux I was given omeprazole (which made no difference). I also had various deficiencies like b12, iron & folates.

I had an endoscopy & MRI on small intestine in summer which showed nothing and fecal calprotectin (sp?) also showed nothing. I was on pred at the time tho.

I was sent away with a diagnosis of IBS and told to call when I had another bout of diarrhoea to go for another colonoscopy, which I now have this week.

I am also now getting arthritic pains in my wrists and ankles. No one will deal with this without a formal diagnosis.

The eye drs say there is no way I only have IBS and say its IBD, most GPs I see say the same, just the stomach dr who says its not. My life is horrific at the moment with huge weight gain and hairloss due to meds.

I also have suspected gallstones after an ultrasound, just to make matters more "fun"

I am now on a low dose of prednisolone (2.5mg) and last week got a bout of middle of the night diarrhoea 4am as is the normal pattern (goes away in afternoon!) A few days later the diarrhoea stops and my period starts which is more painful than usual.

I have no idea what is going on, doctors have no idea what is going on. They are all so non committal. The dr dealing with my stomach says they won't know until I'm off the steroids and the eye doctors say I'm on them long term.

I just wanted some advice as what to do next. Could it be purely related to my menstrual cycle? Can PMS make bowel conditions worse? Can IBS cause eye & joint inflammation? Could it be endometriosis causing the inflammation and/or diarrhoea?

Sorry for the long winded post. I'm getting desperate now. Drs are happy to leave me in limbo for years but my life is passing me by and I'm not living it.

 

[SarahBear]

Hi, welcome to the forum!

Quick question - do you ever have blood in your stool?

I don't think IBS can cause the extra-intestinal manifestations you described (eye and joint inflammation). I'm looking it up and I don't see anything saying it can. IBD can and often does cause these issues.

Have you had a capsule endoscopy done to see the small intestine?

Endometriosis can cause symptoms very similar to Crohn's. Have you tried birth control or other hormone pills to see if they reduce these symptoms? Have you been formally diagnosed with endo (has it been seen during surgery)?

 

[Birdybirdywoofwoof]

Last year I had blood but not since I've been on steroids.

I haven't had the capsule thing. We don't really get to choose what tests we get but I had an MRI which showed no problems with intestines (can't remember word they used, where it gets smaller so things can't pass through)

I was on the contraceptive pill and it made no difference to the stomach problems but periods weren't so horrific but my gp took me off it when the steroids made me fat as it was a danger apparently. I have never been diagnosed with endometriosis but I'm now grasping at straws and looking at any possibility.

I have no life with all this going on and am desperate for an answer.

Apologies I forgot to say thank you for your welcome

 

[SarahBear]

I'm surprised your doctor hasn't ordered a pill cam. Could you talk to them about it?

Do you mean the MRI did or did not show narrowing or stricturing?

Endometriosis is very common (and even more common in women with IBD). The tricky thing is that unless it's severe enough to show up on an MRI or CT scan, the only way to definitively diagnose it is through surgery. My doctors seem to be in agreement that it's a very good possibility for me, but as long as my symptoms can be control with birth control, it isn't worth doing the surgery. Since you're having problems figuring out exactly what is going on, it might be worth having it done.

The fact that you had bleeding before the steroids makes me think there is some sort of IBD. If I were you, I would request a pill cam and maybe another colonoscopy, and consider going off the steroids for a bit beforehand (if your doctors think it's safe, of course). They may be helping your symptoms, but it also sounds like they're hiding the signs of illness that they'll need to see to diagnose you. Once you're diagnosed, you can be better treated.

:hug: I really hope things work out for you.

 

[Ihurt]

Sorry you are dealing with all this. I am not diagnosed yet either.

I also have female issues as well. I mean I was told by my retired gyne years ago that she was sure I had endometriosis. The only sure way to diagnose it is through a laproscopy. That is really the ONlY way it can be seen. It can adhere to any organ in your body, but usually it adheres to the bladder, bowels, and other adjoining organs like the ovaries and such...

If you do have endo, usually there are some symptoms to it. Usually your periods tend to be VERY painful and you might bleed heavier or for a longer period of time( 7 days or more). But everyone is different in that respect. Also endo can really upset the bowels especially during your period. I get way worse with my intestinal pain when I am on my period. I am on it right now and I am in agony. I cannot take the usual treatment for endo pain ( which is strong doses of NSAIDS). This just makes my guts worse. There are things that can help with endo which are BC pills and lupron shots that put you in menopause. But there are side effects to these type hormonal drugs.

I would say your best bet is to maybe get a different opinion with a different GI doc. Your eye issues can be related to crohns and many other immune issues. Endometriosis is also an autoimmune issue so a lot of things can manifest I suppose. I hope you an get it all straighened out and get some treatment and relief.

 

[Birdybirdywoofwoof]

I have a colonoscopy today but just got my fecal calprotectin levels (while still on pred) returned showing some inflammation. They said levels were 108 but it doesn't mean much to me.

I'm taking this as a positive thing as it means I could be closer to a proper and final diagnosis.

 

[Birdybirdywoofwoof]

Well colonoscopy is over it looked normal to the naked eye, as it did last time, so waiting for biopsy results. In the meantime the dr says its IBS.

No idea whether IBS is associated with inflammation but it would be a horrible coincidence that it only appears during inflammatory flares on other body parts.

Look like its back to the drawing board then.

 

[bozzylozzy]

hi birdy, sorry you havent got any immediate answers from the colonoscopy..
there are other forms of IBD - such as microscopic colitis that can only be diagnosed with biopsies and is not seen by the naked eye.

so will see what the biopsies say, did they say how long it would take to get your results?
i agree with sarahbear that you should request a pill cam.

best of luck! and make sure to keep us updated :hug: