It's Back After 26 years...Now What?

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Gumart1
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/9/2010 9:18 PM (GMT -7)   
Hi all, I was diagnosed with Crohn's in 1979 at 9 years old and had a small bowel resection (6" removed) at age 13. Continued with Azulfadine for 2 years and then was symptom free for nearly 25 years. Colonoscopy just confirmed that the Crohn's is back.
This time I feel mostly fine with an occasional cramp before a bowel movement. I still have a great appetite but feel bloated occasionally. My bowel movements are firm, even constipated, which I cannot understand?
My bloodwork was good with just a slight anemic result but I've always been borderline anemic.
My CRP levels were normal. I have a normal amount of energy each day.
My doctor wants me to consider Imuran or Remicade but I feel perhaps this is too strong a drug considering how I feel, though the colonoscopy did show some pretty strong inflammation. I feel OK but did feel pain when he pressed near my lower right quadrant. I know it is there.
What about a small dosage of Budesonide or Pentasa or Sulfazalazine?
I don't like the side effects I am reading about Imuran.
 

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 1/9/2010 9:52 PM (GMT -7)   
Me neither to your last comment. My doc wanted to put me straight on Imuran, but I have had questions as to why that and not a first tier drug like Pentasa. My symptoms (I was just diagnosed though in Nov.) were very minor, with some constipation and not D. Bloodwork showed many markers though of elevated inflammation, which was confirmed with the colonoscopy. Question though...what does the doc say the consequences would be if you didn't go on Imuran right away? Just curious.....
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds yet, Garden of Life supplements


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/9/2010 11:30 PM (GMT -7)   
I think that doctors are now hitting Crohns with stronger drugs rather then starting out with base line drugs. They want to hit it hard to get us feeling better and put us into remission sooner to help avoid futher damage of our intestines.
I wish I would have listened to my doc after surgery and taken Imuran or Metho insted of the Asacol that I have been on for the last 8-9 years, maybe the Crohns would not have come back after 9 months.
I'm listening now by starting Humira, do I like it? No! But I don't want to go through surgery again.
To each there own as to what meds they should take, I'm not messing around any more.
Good luck with your decision, I wish you good luck.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/10/2010 4:17 AM (GMT -7)   
I was in my early thirties when symptoms started and was fortunate to be Dx'd w/Crohn's w/in less than a year. I couldn't tolerate azulfadine and ended up having an emergency resection 2 years after my Dx. I was then blessed w/a 20 year remission so our stories are somewhat similar.

When symptoms returned, they were mild and similar, almost exact, to yours. I started on Pentasa, w/a trial of metronidazole (Flagyl). The Flagyl was a miracle drug for the symptoms, but I encountered the peripheral neuropathy side affect many do so had to discontinue it. I refused to consider prednisone at all.

After investigating Imuran, I opted to try it thru the U of M immunosuppression monitoring clinical trial. I really had no noticable side effects from it. No nausea and I am VERY PRONE to nausea, possibly some sleep effects but I just switched to taking it at night before bed. (Now I take it in the morning w/no problems).

I have been in symptomatic or full remission after starting on a combo of Imuran, Cipro and Pentasa for 6 months and then just Imuran and Pentasa. (The Cipro was in place of the prednisone or Entocort, both of which I refused).

It usually takes 3 to 6 months for Imuran to really kick in and become effective so you usually do need something such as Entocort, Cipro or prednisone to assist it until the Imuran has had time to fully take effect.

Entocort has less systemic side effects than prednisone (usually) but it is still a steroid and has the same osteoporosis risks. Cipro is not w/o risk (is any drug?) w/the most prevalent being muscle or tendon tears, mostly the achilles tendon, so you don't want to be doing strenuous muscle and tendon exercise of any type (not just formal exercises, even just "around the house and yard" straining of the muscles and tendons) as a precaution.

Like you I was leery of Remicade. MUCH MORE leery of Remicade as Imuran has been around and in use for years and 'cade was so new. Too new for my comfort. At one point I seriously considered it. I was even scheduled for my first infusion. THE DAY BEFORE my infusion appointment I read that there was a Remicade clinical trial for COPD. I have COPD. The clinical trial was ended early. THAT made me nervous. I called the company to ask why and they told me they weren't at liberty to say, to talk to my gastro and have my gastro ask them why. I called and cancelled the 'cade infusion w/o even bothering to call my gastro.

Good thing I did!!! The clinical trial was ended early BECAUSE of its serious undesirable effects on COPD.

Its taken all these years for the more serious POSSIBLE side effects of Imuran to become known and recognized. At my age I prefer to risk the possible long term effects than the short term side effects cropping up w/the biologicals the medical profession are so enamored of right now.

IF I were considerably younger and really really sick w/the Crohn's activity I might quite likely reconsider my current decision. Many people have had WONDERFUL results from 'cade and Humira, etc.
 
When I was started on Imuran thru U of M they did a blood draw the day before my first dose. Another blood blood draw was ordered at 1 week, 1 week, 1 month, 1 month, 3 months, 3 months, 6 months, 6 months and one year. Every 3 months the first year they also ran the Prometheus test that indicates your therapeutic level and hepatotoxicity risk.
 
Now we just monitor my Imuran therapy via regular blood draws for CBCs, hepatic function and I forget the other blood test.
 
Quite likely you have some degree of obstruction at your anastomosis. That's where mine is. The tendency to constipation is one I also experience, always have, even before Crohn's and even when the Crohn's was most active.

Anyway, this is just MY way of thinking and MY personal decision. Good luck and God bless in making your decision.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 1/10/2010 4:35:09 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/10/2010 8:38 AM (GMT -7)   
I once enjoyed a 20 year remission without any meds either, mine unfortunately ended ugly with an emergency resection. I would recommend giving the Imuran or 6mp a try. Maybe this will keep the Crohns quiet for awhile longer and help you avoid surgery. I agree with C2 that more than likely after all this time you have developed another stricture at the reconnection site and the Imuran or 6mp might help you avoid that additional surgery. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/10/2010 3:03 PM (GMT -7)   
Many doctors have changed their treatment and are often considering using the hard guns and a top down approach instead of earlier from down with milder and gradually up to stronger meds.
Personally all Crohns meds are too hard for me, and of course the hardest ones are humira, remicade and imuran, due to the fact that they are suppressing the immune system and makes me vulnerable getting my kidney cancer back again. Had a kidney tumor surgery a few years ago, and the only med I can use, is an off label prescription on low dose naltrexone. This medicine (LDN) is increasing the endorphins, betaenkephalins and other immunity cells, which helps the body doing the job it always does if your a healthy person, the cells will be able to kill the enemies instead of attacing the linings of the intestines. LDN is able to be combined with Asacol, pentasa and other medicine in this group, but is not able to be combined with humira, imuran or remicade. Those medicines are suppressing/modulating the immune system. LDN is doing the opposite, working even better if you consider using a diet with low carbs, diets like The Makers Diet, the SCD diet, Jini Palteson Thomsons diet or even going gluten free could be of help for some. LDN is also working even if you don't go any of these routes, but you have to be more concious on what you're eating. Wheat, sugar and even some dairy is of importance to research if you want to go an "alternative route", naturopath doctors could be visited to find out more. /Bee

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 1/11/2010 4:32 AM (GMT -7)   
I also had a long remission, 20+ years. But when CD reared it's ugly head again it was with a vengence. I did a year on Remicade and had to stop for side effect reasons, otherwise I'd still be on it. Been back to Sulfasalazine since because of dropping white counts on 6MP, Pentasa etc didn't have much effect on my disease. So, this Friday I'm going in for surgery to remove strictures at the surgery site in '82. Talk to your doctor and address your concerns, if you want to take it slow with the meds that's your choice. However some dr tend to want to be agressive in treatment.
 


Gumart1
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/12/2010 7:13 PM (GMT -7)   
Wow. I appreciate each and every response here. I can see clearly that each person's experience is different from the next. I am encouraged after reading that many of you have suffered much more than I, and do not give up hope. I read that for some Imuran was a lifesaver, for others it was intolerable. While I believe my gastro doc is one of the best in the Chicago area, I am stubborn with choosing and taking meds after having no choice in the matter while being treated for Crohn's as a child. I'm scared of the immunosuppression from these particular drugs. This year, with no meds, I have been sick with every virus my wife (teacher) and 5 year old daughter brought home from school.
My recurrence came as no surprise this past year, having had several highly stressful events which probably triggered it. Though I experienced moderate bowel pain last summer, I am essentially pain free with plenty of energy at the moment. I have reduced my stress level considerably, and would like to believe that through proper diet, exercise, and stress-reduction I could calm things down. I may be naive in my thinking. I just feel very well at the moment, haven't lost weight, have a great appetite. I certainly don't want to increase my cancer risk with untreated Crohn's, but some of the meds carry these risks as well...
By the way, if the colonoscopy showed marked inflammation but my blood tests were close to normal with just slight anemia, how often and how would I be retested to determine if I am in remission? And, has anyone successfully treated their Crohn's with diet alone? I am reading about L-Glutamine, Colostrum, Priobotics, etc. I already use ground flaxseed but fish oil (krill oil is what I've tried) seems to cause flatulence. Imuran may be my best bet but I'm still not sold on the top-down approach.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/13/2010 7:12 PM (GMT -7)   
Imuran is no longer considered a top down approach and hasn't been for years.

The biologics are the "sweethearts" of the gastroentorologists for Crohn's disease right now.

We don't receive the high doses of Imuran that kidney transplant patients did. The dosage and monitoring is done to sooth and calm down the intestinal immune system but not so much the rest of our immune system.

I have COPD and even w/COPD I've had less colds, sinus infections, etc., etc. since taking Imuran than I had BEFORE taking Imuran. I've been healthier overall taking Imuran than before taking Imuran.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/13/2010 7:30 PM (GMT -7)   
I have a few qualms about those blood tests that show your inflamatory markers. I would be feeling pretty horrible and the doctor would have me get a blood test done and would show that I was fine. After several months of complaining and low inflamtory markers they did another colonoscopy and said yes you are flaring.....

You might consider researching LDN and then speaking to your doctor about it. I just started taking it about 2 months ago and feel that I am already doing much better. Plus there are little to no side effects of LDN, but you have to get your doctor on board.
AKA - ChronnieMan

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