Help! I'm in a 2 1/2 Year Flare

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LadyCordelia
New Member


Date Joined May 2008
Total Posts : 11
   Posted 5/10/2010 12:42 PM (GMT -7)   
I have been a regular reader on this forum for the past couple of years.  So many of you have encouraged me to keep trekking with this awful disease.  Thank you!
 
However, I have been in this flare for 2 1/2 years.  I have chronic bleeding from my colon.  Not to be gross but rather specific, when I say bleeding I mean blood clots as well.  I just finished a round of prednisone at the end of February.  I was on Imuran, Lialda and CortEnemas as well.  I discovered the Lialda caused diarrhea and my doctor took me off of it.  The Imuran was working.  I was finally not bleeding, had normal stools and felt like my life was pretty normal with one caveat - severe joint pain.  The Imuran caused crippling joint pain and so my doctor took me off of it.  Now just 2 weeks later, all my Crohn's symptoms are back with full force. 
 
I am so frustrated.  I am 30 pounds heavier from the prednisone and dealing with the Crohn's symptoms again.  I am currently not taking any medications.  I feel better when I am not taking meds.  My doctor said I am abnormally sensitive to medications.   The side effects are worse to me than the Crohn's symptoms.  I was wondering what the long term effects would be if I just decided to live and deal with my Crohn's symptoms and not take any meds?  I would appreciate anyone's ideas and thoughts on this.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/10/2010 1:00 PM (GMT -7)   
Well I am a firm believer in maintainence meds. I once had a 20 year remission med free. While I was busy getting on with my life, the Crohns was still in there doing its damage on a microscopic level until my remission abruptly ended with an emergency resection. After that surgery the Gi I had at the time (now fired) said well you don't need to take meds now that you had surgery. Well 3 years later I was on the operating table losing more bowel.

What about trying something stronger like Remicade or Humira? With being in a flare for so long you really need to get this back under control.

Have you changed up your diet any? I personally follow a low residue diet all the time as that works best for "me". Others have found success with either the SCD or Makers Diet. You might want to google and get some diet ideas from the diets I mentioned.

Another thing I was wondering, did you ever try 6mp? Thats the sister med to Imuran. I did not tolerate Imuran either, made me really nauseous etc. But doc put me on 6mp and I didn't have the side effects with that one.

Good luck and keep us posted.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 5/10/2010 8:50 PM (GMT -7)   
I can't tell you what you should do, but I do not recommend that you go off your meds. Have the doctor try something else on you. Before, I had tried every natural product and supplement out there, unfortunately it didn't help me if any, and may have increased the flares I had so if you try this be careful.

If only I could spare you the pain and damage associated with crohn's.

I think the most important thing is keeping yourself comfortable and preventing future flares. Have you tried going off meds for a short time? If so, how did your body respond? Listen to your body, it rarely leads you astray, but if you are going to do this, check with your doctor first to make sure it's okay if you try.



CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 5/10/2010 9:14 PM (GMT -7)   
imho, if you are having this kind of problem, and for so long, you do need to be on meds to try and get it under control.

but as you said you feel better off them and are unusually sensitive to them, then i cannot implore you enough to check out the dietary route. being a member here for 2+ years you must have seen the threads on the scd and makers diet. re-read them, then pick a diet and try it for at least 6 months. the longer you wait, the longer it will take for the healing to begin and the harder it will be to heal using a natural approach.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/10/2010 9:24 PM (GMT -7)   
Hi LC,

I flared pretty much for 15 years, the biologicals where just coming out when I was so severly blocked that I had no choice but surgery. I lived with my CD mostly unmedicated for years, and I wouldn't call that an easy life.

I had the same reaction to Immuran, though my GI at the time, now fired, dismissed the severe joint pain and then blamed me for the reaction pf a temp piquing at 108. Not fun. Good thing you got off it, you would have gotten worse. Obviously Pred doesn't work for you either, so moving to other meds is worth a try.

Obviously you need to keep trying meds, biolgicals, Humira or Remicade 6MP and Cimzia are your options.

I have another option, but let me say, your GI may know nothing of it as it's just beginning to be researched. It's called Low Dose Natrexone.

Advantages:

Cheap, cheap, cheap.
Does not suppress immune system, in fact it modulates/supports it.
Minimal side effects, sleep loss and weird dreams that go away.

Disadvantages:
Cannot be taken with all immune suppressants, except a small dose, 10mg or less of pred.

Like I said, it's has been used for CD off label, and is now being researched by Jill Smith at Pen state in US. Someone here posted an abstract of her findings from a double blind study which show similar efficacy to present treatments. It's been used to treat other auto immune diseases, MS, Fibro with good success.

It can be proscribed by any doc in US and Can, but finding one who will may or may not be a challenge.

So you'll need to to your research and take the abstract to your doctor too.

Some links to help you:

http://lowdosenaltrexone.org/

http://www.ldnresearchtrust.org/

You can always have your doctor get in touch with Dr J P Smith at Penn, to find out more.

Crohn's is a hassle, it won't let you forget about it, and it's probably wise to keep an eye on it.

Hang in there, BE well
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

Post Edited (MToronto2) : 5/10/2010 10:35:18 PM (GMT-6)

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