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Crohn's will not go back into remission

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Crohn's Disease
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Posted 10/10/2007 2:48 AM (GMT 0)
I am a 28 year old female, married and two kids. I have had CD for 13.5 years now. I was diagnosed on Christmas Day 94 and had my first surgery New Year's Day 95. I have had an ileostomy ever since then. My CD has always given me alot of problems. I was unable to finish school in a public school, so my mom home schooled me through the state. Then when I went and got a job after high school I had surgery every single year. Luckliy I had a job where I got laid off for 3-4 months every year. After 5 years of working my doctors told me that I could no longer work due to the stress. So I went onto disability.

In October 2006, I decided that I was feeling great and that I would try to go back to work. I worked for a month and ended back in the hospital. It has been almost a year now and I have been in and out of the hospital 3 times. Everytime I go off of Entocort I get a mojor flare-up about 1 week later. I have joint pain bad and sometimes cannot even move. My stoma has had CD in it so many times that now it is not working right. So now I am putting up with the CD in my stomach and my stoma not working right.

I have no colon and only half of my small intestine left. They took my utures when I was 23, and now my nerves to my bladder are damaged so I have to get the Interstim Therapy put in.

Is there any recommendations on maybe something I could do to help put the CD back into remission. I just started Yoga to help relieve the stress from my body. I am hoping that will work a little bit.

If anyone could give me some pointers I would greatly appreciate it.

 

Thanks

Posted 10/10/2007 2:52 AM (GMT 0)
I'm new to the forum but wanted to say welcome. I'm sorry you're having such a hard time. Lots of helpful people here, so I hope you get the support and advice you need and deserve!
Posted 10/10/2007 1:39 PM (GMT 0)
You know there is a lady on this board (PB4) who is also allergic to most Crohns meds and is able to take various supplements to keep things mostly under control. Maybe try posting a post to her and see if she can help. Sure hope you get feeling better soon. God Bless.
Posted 10/10/2007 4:23 PM (GMT 0)
Wow, for someone only age 28, you've really been through a lot. And I thought I had it bad (3 surgeries in 17 years).

I was taking a number of drugs for my Crohn's, but results weren't great, and some drugs (most notably predisone, which nearly blinded me) had very damaging side effects.

At the moment, I'm experimenting with naltrexone. A number of us are. I've only been on it for 3 weeks, and I do feel better, but I think it's too early for me to say much about it because there is the possibility of either placebo effect, or just that I'm coincidentally in a period of remission (which does happen). After a couple of months, I will give a full report on this forum about my experience. But if you're desperate and looking for info about this, take a glance at http://www.lowdosenaltrexone.org/.

Also, I've been taking supplements, and I can say they've really helped. Some which work for me include probiotics, MSM and vitamin A (derived from fish oil, not beta-carotene). My diarrhea has been reduced dramatically.

There are some special diets that help. There is the specific carbohydrate diet, which is hard, but a lot of people have gotten relief eliminating the same foods that cause celiac disease. Here's some info on that:

http://www.csaceliacs.org/celiac_treatment.php

I guess you've tinkered with your diet some already. For me, I know that I absolutely cannot drink caffeine (coffee, tea or cola). Caffeine has the same effect on me as a laxative.

Hope this is of some use. Post some more if you have questions. Lots of people here are willing to help.

best regards,
Robert
Posted 10/10/2007 4:57 PM (GMT 0)
Thank Robert for the info. I do not have a problem with the big D. I have an ileostomy and it is supposed to be loose. I have the opposite problem, things start slowing down and then sooner or later things just stop going through and I end up in the hospital. The only thing that does fine is a liquid diet, I will be honest, i am not that disciplined to go on a liquid diet forever. The doctors don't want to remove anymore intestine, because like I said all I have left is half of my small. They also don't want to remove any of my stomach because i am finally at the weight that I should be and removing someof my stomach would, of course make me lose more weight again. Also, they do not want to remove any more intestine due to my age.
I have tried the low-residue, low-fat, hight protein diet like my doctors suggested, it does not do anything. I have a noticed a little difference since I cut dairy out of my diet. I only have at the most 2 cups a day.
I have been taking supplements such as: fish oil, acai, & a mutli-vitamin since I was 15. Just recently I also added B-17, because of the cancer risks. If there is anything else out there that I am missing that I have not tried that would be great.
Posted 10/10/2007 5:20 PM (GMT 0)
I can understand why you do not want to live on a liquid diet forever - that would be hard.

Although diarrhea doesn't appear to your biggest concern, diarrhea is symptomatic of an underlying problem (inflammation). Like you, I don't worry much about diarrhea, and sometimes it even feels good to get all cleaned out. However, most of us Crohnies have diarrhea because our intestines are all inflamed on the inside, and a reduction in diarrhea is a sign that the condition of the intestine has improved.

Feel free to try my suggested regimen of probiotics, MSM and vitamin A. Doesn't cost much and doesn't require a prescription. Considering the seriousness of your condition, low-dose naltrexone might be something you should look at. It's a pretty economical and safe drug, having been on the market for 30 years or so, though it was used for a different purpose (treating opium addicts and alcoholics). It's recent popularity for treating immune system disorders is definitely experimental. It might be nothing more than a shot in the dark, but when you're desperate, there's not much to lose.

Getting a doctor to prescribe naltrexone can be tricky, and it's not normally sold in the low dosage we Crohnies need. I make my own low-dose from the standard high-dose. Here are instructions for doing that:

http://goodshape.net/HomemadeLDN.html

I didn't even bother getting a prescription. I bought mine online from riverpharmacy.com. I've found them to be reliable. Ask me for more info if you want to pursue this.

good luck and best regards,
Robert
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