My Story

[damoshk]

Good Morning Everyone. My name is Kristy and I'm a 29 yrs woman from Long Island NY. I was diagnosed with Crohns Disease 2 years ago and just when I think I'm improving a flare comes up. It's a constant battle and well I figured I would join a forum for support being as though you guys know exactly how it feels. They had me on sorts of medicine: Pentasa. Prednisone, Imuran and something else that I can't remember the name to. None of it seemed to helps so i stopped taking medication and completely changed my lifestyle. No drinking, smoking, no fried foods, red meat, heavy sauces...lots of things. I've lost over 130 lbs and which that is good it's bad too. I find myself with no appetite often and my hands and nose and feet are often very cold. I'm very sensitive to a flare up whether it be...moving, mentrual period, stress and its very frustrating. I went back to the doc and got put back on Pentasa hoping that would help, but I feel as though the pain has subsided for the most part but the diharrea is still very much there and I sometimes feel feverish. I havent had children yet and I really want to so i dont want to take lots of meds. I have a great family and boyfriend who are very supporting but at times I feel all alone. Is there anyone out there that can relate? and have any tricks that may help. I was reading on Goji juice and has anyone had the same side effects from Pentasa? I appreciate the support.

 

[Catherina]

Hi Kristy, I managed Crohn's the way you discribed for many years (because I didn't know I had Crohn's and the doctors pursuaded me that everything was psychological). So I took no meds, had a healthy life, excercise, lot's of work, friends etc. etc. Did lose weight though and was a bit anaemic but ... who cares. Everyone wants to be skinny and many women are anaemic, no problem, until .............. this diarrea became a bit worse, there were a few more afternoons that I was a bit feverish and I let it go on until the bomb burst. To the hospital with a ruptured testine and a ruptured gal bladder. My point is: mind your food (you know best what bothers you), make sure you get enough vitamins etc. but don't skip on your check-ups, don't wait going to the doctor if you get feverish. Severe complications of Crohn's do not always come with a lot of pain or heavy fever and symptoms. It can creep up on you very sneeky with you thinking you caught a bladder infection or some mild virus. Be careful. I have no side-effects with Pentasa and have found no solution to the diarrea but I noticed that the more relaxed I get (to the border of insensitivity) the better I feel. So learn to go for a coffee with a friend in stead of washing the dishes. Dust your house once in stead of twice a week and ........ in general, don't worry about doing things that have no immediate influence on your regular live. Try and have some fun and relax as much as possible.

 

[damoshk]

Thanks Catherine. I really appreciate the information and advice. I called my doctor today to see if they can move my appt to a sooner date. I am concerned of a fistula or infection in my intestine. I will definitely take your advice and try to take a more relaxed approach to everything...thank you again..it means alot.

 

[xJillx]

Hi Kristy and welcome! I am sorry you haven't found any meds that seem to help. How long have you been back on Pentasa? I haven't taken this, but I take Lialda which is similar. I am told it is for mild-moderate cases. However, you said you took Imuran, and that didn't help either? I sure hope you can get in to see your doctor soon and come up with a new plan.
I am in the same boat as you with wanting to have children in the near future. I am scared of taking medication while pregnant, but studies have shown that it is much worse to let your disease run its course without treatment. Also, it is important to be as healthy as possible (preferrably remission) when getting pregnant. For more info, check out the Crohn's and Pregnany sub-forum - lots of good info in there!

 

[CDDad]

Hi Kristy,
I hope you reconsider going off your meds. I also abandoned meds many years ago when I was frustrated and thought nothing was working for me. Flash forward many years later and I had let too much inflamation fester over the years. It did not cause me pain over the years, but anemia, diarrhea and such. Anyway, I do think that is somewhat responsible for my current ostomy bag situation.

Good luck and welcome to the forum.

 

[ameslouise]

Hi Kristy and welcome!

Ditto what Joe says - please reconsider the meds. There are people who are able to acheive remission with diet and lifestyle, but you just have to pay attention to your body and listen to what it is telling you.

If you "sometimes feel feverish" this is a classic Crohn's symptom and could indicate an infection. If you haven't recently, you should get a full panel of blood work to check your white blood count, and also your iron & hemoglobin levels, as well as vitamin b. If you feel cold all the time, that is also not a good sign.

Good luck - I hope you can get things under control so you can pursue starting a family soon!

- Amy

 

[hawkeye]

Hi Kristy:

I echo Joe and Amy's advice. Meds kept me in remission for the better part of 20 years.

Mark

 

[acg101]

Hi Kristy,
As Joee and Amy said above, please reconsider your approach to meds. I dealt with CD for 15 years out of which 9 were in remission. It will not go away on its own.