My Story

[CDwontbeatme]

Hello Everyone! I’ve been lurking around this forum for a while and now I worked up the courage to introduce myself.

I’m 46, married (20th years!) with three teenage daughters (ages 16 and 14 year old twins). After the twins were born I started having diarrhea, and my family doc said I had IBS that was likely triggered by my C-section with the twins (go figure?). Years later I started having terrible abdominal pains, and I was diagnosed with Crohn’s in the terminal ileum in 2006. I started taking Pentasa, but it didn’t work and I got a lot worse. I was hospitalized for a few days, and then put on Imuran.

We moved to Texas in 2010, and my new GI suggested I have another colonoscopy since it had been a while since my last one. Good thing I agreed – I had swelling and ulcers throughout the lower 3rd of my small intestine. My GI couldn’t believe that I wasn’t in any pain and that I was eating normally. She switched me to Cimzia, which worked for about a year. Then I developed strictures and could barely pass any stool and gas. I was also severely anemic, and had kidney stones. I finally had a small bowel resection, hysterectomy, & appendectomy (all at once) in December ’11.

I had another colonoscopy in October, and the swelling & ulcers are back. :ymad: I have no pain and I feel really good, but the diarrhea is back and I also have gallstones. I started Remicade about a month ago. No one understands how my guts are such a mess but I don’t have any pain.

My husband and daughters have been wonderful – my husband has learned almost as much about CD as me and has been my advocate when I was too scared or too out of it to speak for myself. Their support has meant the world to me.

Thanks for listening. And thanks for this forum – you all are great! :hug:

 

[Kfox]

Welcome... I've only been on the site for the past week or so... I'm 47y/o, married and have a daughter age 24. I was diagnosed at age 20. My sister at age 30. I had a right colon resection in 2005 and thought I was in the clear for up to 10 years, but no... It came back last year and has gotten progressively worse. I'm on Humira injections weekly. Pentasa made my hair fall out. 6-MP stopped working, as did Asacol and Remicade. I've signed up for a trial in Seattle for treatment resistive people. They're putting Crohns patients in remission with bone marrow transplants. I'd give my right arm to get 10-15 years off (which is what the transplant offers)
Keep me posted on your progress... Good luck to you!
Karen

 

[Angrybird]

Hello and welcome to the forum

With this disease everyone is different with how it behaves and there never seems to be any rhyme or reason to it. I am sorry to hear that despite feeling well things have bubbled away inside on you, I will be keeping fingers crossed that the Remi can do the job and settle the tum. I have been on this myself and did really well for several months until unfortunately it had to be stopped due to a reaction I had to it, we do have a sub forum for this med though if you would like to have a chat with others who are on this: http://www.crohnsforum.com/forumdisplay.php?f=58.

Wishing you all the best and please keep us updated on how you get on.

AB
xx

 

[David]

Hi there and welcome to the community.

I would bet that a magnesium deficiency is causing some of your problems. For example, as this study showcases, people with diets high in Mg have a lower incidence of gallstones (granted, the study showcases many other dietary differences as well). But anyway, people with Crohn's disease are CHRONICALLY deficient in magnesium and with your resection, you're at even greater risk. I personally believe magnesium deficiency plays a major role in Crohn's disease. I would suggest discussing supplementation with your doctor. They may want to test for it, but if they do, ask for a test other that the serum test as the body does everything it can to keep serum levels constant to the point of robbing Mg from bones.

And with your resection, getting your vitamin B12 levels tested would be worthwhile as well if you haven't.

Again, welcome to the community!

 

[afidz]

Hello!
First of all, I LOVE YOUR NAME. It says a lot to me. I have been told on many different instances that even though we feel normal and healthy, there can be something going on on the inside that you aren't aware of. Thats why its a good idea to get a scope once a year. I have heard great things about Remicade, hopefully it can get your insides to calm down! Its great to hear that your surrounded by supportive family members!

 

[CDwontbeatme]

Thank you everyone! I'm hopeful that Remicade will be "the one." I had my 3rd loading dose last Friday so we'll see. I see my GI this week and will definitely ask about Mg & B12. Last time my blood work showed that both levels were fine, but I think I need better tests.

Kfox -- Pentasa made my hair fall out too. :yfrown: