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cnygard posted:
Hello all,

I have been led here I think by chance as it seems ment to be that I found this site. I guess I am looking for some sort of a support group.

I am a single mom and have Crohn's I was diagnosed in 1998. I have had alot of struggles over the last 2 years. Constant hospitalizations for Pancreatisis that they can not diagnose the cause, gout and it always ending up with my crohns flaring and rounds of prednisone. I seem to get ever side effect possible from the prednisone. Mood swings, hunger, having a hard time breathing from all the fluid I retain. insomnia to the point that I may sleep only 2-4 hours per night. I feel as though I am a basket case most of the time. Not knowing if I will cry, laugh or scream. I puff up like a balloon fish and have put on over 80 lbs over the last couple of years. that I never seem to have enough time to get back off. When I do start feeling health I find a ways of losing weight through boot camp, or other excercises but everytime I start losing I get sick again.

I am off Humeria now as they are looking at putting me on a trial drug and have met with a surgeon which I feel I am not ready for. Does anyone have any input. Any ideas I am desperate. Has any heard about Living Clay?
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forgetfulagain responded:
Hey there,

I also have Crohn's.

I would stay away from Living Clay and such other "cleansing" or "detoxifying" products because they most often tend to kill all the good bacteria in the gut you need in order to function. If you want to go the homeopathic way discuss this with your doctor, or if s/he is not into it, consider products that have some sort of testing behind them: probiotics, peppermint oil, etc. You can search for products on MedlinePlus (registration is free). I have used probiotics before successfully when I had a flare and did not want to go back on steroids. But everybody is different. (I would recommend the refrigerated probiotics since the shelf ones are guaranteed for bacteria only at the time of production not while they're on the shelf)

As for surgery, I'm wondering about the same thing. My docs are considering surgery. From everything I can gather, it seems that surgery can be a good choice if nothing else is working and since you're on both Humira and steroids, it sounds like you're at least getting there.

As for the weight gain - try not to stress too much about it. I lowered Entocort just recently and dropped 30 lbs in a few months. It will happen. Just focus on eating healthy (as much as you can) and exercising only when you can. I took up swimming now because it's easier on me...But walking is just fine for example. I think maybe the harsh exercise routines could be making you worse because you're just pushing yourself beyond what your body can handle at the time. (Also remember that steroids make you feel like you can do it, but it doesn't mean you should.)

You should talk to your regular doctor about sleep. You must get enough sleep and anything under 7 hours is insufficient for most people. I take medication for sleep and I'm quite functional. You should try it out I think because not getting enough sleep is not helping your body recover.

Feeling as a basket case - well, I've been there! I don't have much advice on that... I take it as lightly as I can and tell my friends I have 'roid rage... Humor is all I have to offer on this one!

stay well and let us know how you're doing.
best wishes,
forgetfulagain
 
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mindyj1971 responded:
Hi....so sorry for all that you are struggling through. I was diagnosed just 3 years ago. In that time I have tried numerous medications and have had 5 surgeries. The only thing that got me in to remission and feeling better was having my colon/rectum removed. I struggled for months about having this surgery, but I spent more time in the hospital than I did at home. I have been on steroids for a year and a half...also tried Remicade for over a year. The surgeries that I had were mostly resections....had a temporary colostomy done, too, but Crohn's attacked my stoma within six weeks of the surgery and did so much damage. My colon was keeping me so sick....I just couldn't stand it any longer. With that being said...having my colon completely removed was the single best decision I have made as far as this disease goes. Trust me when I say that I thought it would be the end of my world to live with an ileostomy bag, but it truly gave me my life back. I was on disability for a little over 2 years....I am now back to work part-time. I can leave the house without needing to know where every single bathroom is. I can spend time with my kids and not feel like death all of the time. My quality of life has improved 1000 times! I am in no way telling you to have surgery, but in my case it saved my life in sooo many ways. I struggled with the decision for months, but once I healed from the surgery, I wondered why I had waited so long. There is life with an ostomy if that is something that you need to look at in the future:) I promise....

Good luck to you and keep us posted...
Mindy
 
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cnygard replied to forgetfulagain's response:
Thank you so much for the reply. You have given me so much great advice.

I am looking into the medication to help me sleep and I am back to going with the flow for everything else.

Thanks again
 
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cnygard replied to mindyj1971's response:
Thanks for the information. I guess that is exactly what scared me about the surgery. it sounds like they would like to skip everything as I have never had any surgeries and remove my intire large bowel along with my colon and rectim. My heart just sinks everytime I think about it. You have given me a positive spin that I think I needed.

Thanks so much


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