My Story

My first post - glad to be here. I decided to start here due to recent events.

My story:

Diagnosed with crohns in 1997 at age 20 after 6 months of severe bowel pain, bowel movements and weight loss. Also had major joint pain and swelling. I had episcleritis in one of my eyes (felt/looked like a bad case of pink eye) and it was actually an eye doctor who first suggested I had crohns.

Once I saw a GI and was put on a small dose of prednisone for about 3 weeks. Within days I felt like superman. After that I maintained on Asacol for about 8 years and life was ok.

Fast forward to 2006, I got real sick again (had stopped taking my Asacol - but I feel it would have happened anyways). I had dropped from about 170 lbs to 130. New doctor put me back on prednisone which lasted for about 9 months while I ramped up on Azathioprine. My max dosage of pred was about 60 mg/day. Once again I loved it, gained weight fast, hardly needed to sleep, felt like superman. 2 months in I developed bad abcesses and had to have them drained with a 1 week hospital stay. I felt fine leading up to it - didn't feel anything coming while on the pred until it was really bad.

Finally got off the pred in early 2007 after about 9 months. My doctor had me get a bone density exam and it confirmed osteopenia. High calcium levels led to the discovery of hyperparathyroidism in 2008. All my doctors claim there is no connection though.

From that point on I maintained on 100 - 150 mg of Azathioprine and felt good for a few years.

Late 2008 the fistula in my ileum got bad again leading to seepage into my blood. that was bad, finally had resection surgery of my ileum and about 5 inches of small and large bowel on either side. Never went back on pred though I'm still on Azathioprine.

Life has been fantastic since then up until recently. For the last 6 months I've been flaring. A small bowel follow through confirmed active disease much higher up in my small bowel. I'm working through that now.

More on point - this flare motivated me to follow up on some pain I've been having in my left hip. An MRI confirmed early avascular necrosis. For some reason this scares me more than Crohns - guess I'm used to it. I'm still functional but long walks can end up being very painful. It's still early in the diagnosis but all doctors seem convinced it's due to prednisone. I don't understand why it took this long to manifest, I haven't taken any pred for 5 years. I also repeated my bone density exam - awaiting results.

So that's why prednisone scares me. I had very few of the common side effects. I felt incredible on it and was even able to ween off of it relatively easily. But while I was on it I still managed to develop bad abcesses while feeling great. As of now it also looks like I also got one of the rarest and worst side effects - avascular necrosis. I'm 35 and not happy that I'll likely need a hip replacement in the next few years.

I know a lot of folks are on pred and I'm very happy it helps them. But it's a very serious drug, so please be cautious. If you have any sort of hip/knee/joint pain - get it checked out soon.

Thanks for listening.

This post has been copied from a thread relating to Prednisone, hence the specific reference to it.

Welcome aboard owr! :welcome:

Dusty.

Hello owr and welcome to the forum.

You really have been through a lot with so many diagnoses. I'm sorry to hear of your most recent one, but am very glad that you pursued the problem and found an answer before it got too serious. :hug:

Once again, welcome to the family. I hope you find the support and comfort here that I have found. See you around!

Dusty - thanks for the PM and moving my post here. Ive been meaning too for the last few days.

Jessi - thanks for the welcome.

Ive spent a lot of time reading through the forum over the last week. It's been good to hear about other's experiences and successes. Not so good to read about the failures - but I guess its good in a way to know Im not alone.

Im really curious to hear from others who have similar disease to what Im going through right now.

Since my diagnosis (1996), the focus has always been on the area around my ileum. After I had my resection in 2008 and being on ~150 mg of azathioprine for the last 5 years, life has been great in that regard. I only have about 2-3 bowel movements a day, often don't even have one on saturdays. I also am able to have very very well formed bowel movements - sometimes I feel like taking a picture Im so proud (This is probably one of the only places where people would understand that).

Over the last year though Ive been having pain much higher up in my small intestine and have been slowly losing weight. Ive lost about 15 lbs over the last year. I know thats not too bad - I once lost 15 lbs in 2 weeks - but the slow degeneration is quite scary. I still have a great appetite and eat well. For the last 2 months Ive been working with a naturopath and have been trying out some diets based on my blood type diet (Im B-) and metabolic type (Im a fast oxidizer). I also quit coffee and alcohol (especially beer) and this has greatly reduced any occasional pain I was feeling. Its very strange to feel ok for the most part and not have the usual Crohns symptoms - yet still know there is something majorly wrong.

About 2 months back I had an upper GI series done and we found pretty bad inflammation and stricturing throughout my small intestine - 4 spots in particular are pretty bad. Ive had a couple small blockage scares but beyond some sharp pain for about 30 minutes everything has managed to pass through ok. Most of the time though I barely feel it - I could easily ignore it if I wasn't paying so much attention.

My GI is very worried about me. I see a prominent GI at Stanford, she's had over 3000 IBD patients and is very well versed - best doctor Ive ever had. Since my surgery in 2008 we've been doing yearly colonoscopies and everything has looked pretty good. The upper GI series was a surprise. We both put off having that done for too long. After digging through my records I found the radiology report from one I had done in 2006 with a different doctor. Sure enough, I had active disease higher up in my small intestine then as well. We were always so focused on the ileum. Now that we know whats going my GI wants me to start remicade at once in addition to azathioprine. She is a big big fan of azathioprine or 6-mp as long term maintenance. She doesn't trust the biologics - but does have a handful of patients who she feels have no choice. Im not happy to be joining that crew. It was a shock to hear that she thinks Im one of the sickest patients she has had - out of thousands. But I just don't feel that sick - she said its possible to be asymptomatic yet still have very very active disease.

Sorry for the long monologue. I'd really like to hear back from anyone who has active disease in their jejunum and how it affects them.

I also would really like to speak with people who have avascular necrosis as a result of steroid use. Im getting MRIs of my knees done today, as they actually fell worse than my left hip where I already have a positive diagnosis.

Thanks for your time. Take care everyone.

Oren

Hi Oren and welcome to the forum It is annoying that whilst you think everything is going well there is still nastiness going on inside And then to be diagnosed with another thing as well is just taking the mick! Have a look at our treatment forum as there will be lots of info and advice there about the Remicade, whilst it is not ideal hopefully it will get you back on the right track. Am glad you have joined our family and keep us posted on how you get on.