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My Story

I was diagnosed with Crohn's disease in 1979 shortly after my mother died. I was 20 years old and devistated. I stuggled with finding the right specialist and felt like a guinea pig testing one medication after the other with each Doctor disagreeing with the previous one. For a long time I would just suffer because the thought of getting myself off the bathroom floor and somehow getting in to a car to be driven to the hospital, was totally absurd. Fortunately,I did have long periods of remission and no hospital visits. Two years after I was diagnosed with Crohns I developed a blood clot in my right leg (due to the Pill) and had to have it surgically removed. Because of that, I can never take the hormones my body needs right now (more on that later). In 1996 I had part of my thyroid removed due to cancer (I have been cancer free for 12 years now). In 1999 my right knee swelled up and I saw an arthritic specialist who diagnosed me with Crohn's related arthritis. I went on Celebrex for three years.

I have a wonderful specialist who is so kind and takes all the time with me I need. He put me on Entocort, which really turned me around. I still had flair-ups but not as bad and I still have to go on Prednisone 2-3 times a year but not longer than a 5-6 weeks. On the Entocort I started with 3 pills a day (3 mg each) and for the last couple of years I'm on 2 pills a day. One time I was feeling so well I decided to go down to one pill and then one every other day. Worked for awhile and then I got an extremely bad flair-up and couldn't get well. My specialist thought it would be wise to send me for a second opinion since I had been on Entocort for a long time. I agreed. The new specialist wanted me to try Imuran. I wasn't too keen on it, but agreed. It was absolute hell for 3 months!!! Every single day I suffered from naseau, bloating and gas. I returned to him and he told me it wasn't the Imuran and I needed to stick with it. So, I did, and the suffering continued. I couldn't go anywhere because of the nausea. I went back to him and told him take me off!!!! He then told me I needed to go on Humira, so I went back to my original specialist and he said NO WAY!! He said I was doing so well on the low dose Entocort and that Entocort was much, much safer than going on Humira. I went back on Entocort and life got much better again. I know that there may come a time when the Entocort stops working for me, but until then I plan on continueing with it.

I worked as an MOA and technician for a very busy Opthalmolobist's office and retired in December (too much stress). In January when I got my period, I experienced bloating and really bad cramps and backache (I never had a problem with PMS or bad cramps before). After a week of this my Crohns would flare-up. I also experienced bad headaches and poor sleep. My family doctor was sure it was hormones, so I had a saliva hormone test done. In the mean time she put me on Prednisone, just so my stomach could have some relief (4 months with constant stomach pain). The results came back: My estrogen was within range, my progesterone was below range, Testosterone in range, DHEA Below range, Cortisol low range. My doctor put me on Progesterone caps. 10 days after being on the progesterone caps my calf got sore, the vein bruised. Scared me, so back to the doctor. Too strong and they warn about blood clots. So, I'm taking natural progesterone cream that has to be made up in a compounding pharmacy. I seem to be tollerating that well. I went off the Prednesone and 2 days later, bang, had a really, really bad day. I thought, oh no, 7 days before my period and it's happening again!!! But......the next day I felt better, yesterday even better than that and it's been over a week and I have no stomach pain yet. Hooray. Maybe the progesterone cream is making a difference!

I have another appointment with my specialist at the end of the month to see what he thinks about this. I'd like to know how I can get my DHEA and Cortisol higher because apparently there are no meds, other than naturpathic and health store which are not always effective. Interesting enough, Cortisol and DHEA are produced by the Adrenal glands and regulate the immune systme that controls inflammation. They are also associated with chronic illness and make the thyroid work more effectively. It could be that these low levels may contribute to my immune system disfunction by stimulating inflammation. So there may be a connection with hormonal issues and Crohn's.

In any event, I am just hoping and praying that I can stay stable and not experience what I have previously which is only a handful of good days. One day at a time.....one moment at a time!!! Fortunately I am a very positive person!!

"Happiness is a butterfly, which, when pursued is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you."
- Nathaniel Hawthorne
 

My Butt Hurts

Squeals-a-lot!
Hi Island Girl, wlecome to the forum! That is quite a lot of stuff you have been through. Hope you can stay stable now.
Hope you find everything you're looking for here!
 
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