That sux, Bax! I'm so sorry . My dh and son both have Crohn's. PM me if you want to talk about it. My son is 17 and has done pretty well (dx at 9 years old) over the years. He's had one surgery and only 2 relapses in 11 years (it took 3 years to get his dx). Hopefully, it's not Crohn's. We're here for you! :hugs:

Oh, man. I hope it's not Crohn's but something that can be treated and stopped dead in its tracks. Take care of yourself and please keep us posted.

Thanks everyone

I'm going to tell the doctor on Monday I need to know asap after he gets the tests results. He knows I am in the process of being put on tysabri. He said he would speak w/ my MS specialist and let him know what is going on.

He said that they have started treating crohn's patients w/ tysabri. Guess I can kill two birds w/ one stone.

I'll update you next week.

I am not a doctor nor do I play one on TV.

You may want to check out celiac disease, gluten sensitivity and enterolab.com. I was wrongly diagnosed with irritable bowel syndrome a few years ago. Turns out I am really gluten sensitive. Some (not all) people are told they have crohn's when really they have gluten problem. Yes the diet is a pain but the alternatives are worse. Anemia is one of the symptoms and so is damage to the small intestines.

Feel free to PM me if you have any questions about celiac/gluten sensitivity. For those who were told they have IBS or Crohn's I am not saying you or your doctor are wrong. I'm just offering another option that doctors are finally beginning to understand better.

Hi BTB. I'm so sorry to hear that you've got this new thing to worry about. Maybe there's something going on with "all who had their bowel removed last year" .....Please step forward so we can give you some other condition!

I'm pleased to hear about Ty being on trial for Chrohn's. I've been reading a lot of info lately related to positive outcomes from trials being carried out with Methyl Pred infusions for severe ulcerative colitis, so maybe this is the next step forward for like illnesses.

Best of luck with your appointment, and please know I'll be thinking of you and hoping it's something much more simple than first thought.

Did they happen to mention Ulcerative Colitis as an option too? I have been dx with that since the mid-80's, due to ulcers found in a coloscopy. I have had VERY little problems from it since going on LDN.

A clinical trial for Crohns with LDN was extremely successful/promising:

Low-dose naltrexone therapy improves active Crohn's disease.Smith JP, Stock H, Bingaman S, Mauger D, Rogosnitzky M, Zagon IS.
Department of Medicine, Pennsylvania State University College of Medicine, Hershey, Pennsylvania 17033, USA.

OBJECTIVES: Endogenous opioids and opioid antagonists have been shown to play a role in healing and repair of tissues. In an open-labeled pilot prospective trial, the safety and efficacy of low-dose naltrexone (LDN), an opioid antagonist, were tested in patients with active Crohn's disease.

METHODS: Eligible subjects with histologically and endoscopically confirmed active Crohn's disease activity index (CDAI) score of 220-450 were enrolled in a study using 4.5 mg naltrexone/day. Infliximab was not allowed for a minimum of 8 wk prior to study initiation. Other therapy for Crohn's disease that was at a stable dose for 4 wk prior to enrollment was continued at the same doses. Patients completed the inflammatory bowel disease questionnaire (IBDQ) and the short-form (SF-36) quality of life surveys and CDAI scores were assessed pretreatment, every 4 wk on therapy and 4 wk after completion of the study drug. Drug was administered by mouth each evening for a 12-wk period.

RESULTS: Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline 4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P < 0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients.

CONCLUSIONS: LDN therapy appears effective and safe in subjects with active Crohn's disease. Further studies are needed to explore the use of this compound.

PMID: 17222320 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17222320

Cherie

Dear Btb,

I'm so sorry about all that's been happening with you.

Crohn's is tough. My half-sister has had it for years, but she's still feisty and kicking. She also has post-polio syndrome and is a breast cancer survivor. There are new treatments for Crohn's nowadays. I hope that it isn't that though and something passing that will fade away.

I'm so sorry bunny!!! I hope its comforting to know we all care and are praying for you!!

Hi Baxter--
I have Crohn's along with my MS and while it's not a hayride, believe me, it can be managed.

My gastro did a tissue biopsy on my colonoscopy, which is one of the most accurate ways to diagnose this disease...and because of the unusual position of my Crohn's (it's on the lower left, instead of the right, which is much more common) the only thing that has really helped me is Colazal.

The good news is, Colazal is now in a generic form, as of about a month ago, and much cheaper than it used to be.

I'm finally having my first Tysabri infusion tomorrow--yippee! It was prescribed for my MS, but my docs feel that it should help my Crohn's. In fact, they say that I may even be able to go off the Colazal a few months down the road...

Anyway, it sounds like you're in good hands. I do hope it's not Crohn's, but please know that, if it is, you're not alone...a good many of us out here have both Crohn's and MS, and we're still here, alive and kicking! Good luck!

Praying for you.......

you may not remember me,,,but you always were so kind.....

Prayers