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Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/4/2009 2:18 PM (GMT -7)   
Well I just got home from my first doctors appt. following my surgery 2 weeks ago. The doctor said that 35cm of the ileum along with 5cm of colon was removed. I'm a little depressed over this as I originally thought that only 5-6" of TI was going to be removed. I still can't believe it 14". How much can a human lose before you have short bowel syndrome?'m a little worried.
Anyway back to the appt. I asked my doctor what I could do to prevent the Crohns from coming back. Should I stay on Asacol or a different drug. His reply was that Imuran stood a better chance of the Crohns from coming back. He said that it was my decision if I wanted to just take Asacol or switch to Imuran as a long term maint. med.
I would like to her what all of you think of this, the Pro's and Con's.
I want to do what is best,but I don't want to be on some toxic meds that will injure me elsewhere.
Thanks I really appreciate all of you here.

Confused & Lil depressed
Wolfie
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, B-12 injections every 8 weeks.

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


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 3/4/2009 3:16 PM (GMT -7)   
Imuran and its first cousin 6mp basically turn down your immune system a notch. Of all the Crohns maintenance drugs they probably have the longest track record and work well with a large proportion of patients. The one drawback is that they can suppress bone marrow and blood counts in about 5 percent of patients, but this is usually evident early on, when they will draw blood fairly regularly to check for problems. The other concern is a very very slight number of cases of lymphoma in long term iumuran and 6mp patients, but the debate is still going on as to whether this is due to the drug or to the underlying Crohns inflammation which made taking the drug necessary. Even then, the lymphoma risk is miniscule. Overall I suspect there are more people on this forum who are on these immunomodulators, or have been on them, than any other drug. Asacol is basically the bottom level Crohns drug. Imuran/6mp is the next step up, and then you graduate on up to the biologics like remidcade and humira. So you would not be making a big jump.

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 3/4/2009 5:19 PM (GMT -7)   
Ive only been on Imuran for a week and a half, and Ive already noticed it working.  I suffer from adrenal fatigue so I wouldnt be able to tell you about any side effects unless they were major, because my body is always in shut down mode regardless.  My GI told me it would take 2 weeks to find out if the drug was working or not, not meaning if I was vomiting ect ect.  So far so good.  I was wondering tho if anyone knows if its ok to mix immunosuppressants with immune boosters?  And if the immune boosters would even work while taking the suppressants?
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly)
 

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/4/2009 5:30 PM (GMT -7)   
I've been on 6mp for over a decade. As you can see from my signature, I had 3 resections in a very short time, then I started the 6mp and various other things. Some worked, some didn't. But the upshot is that the 6mp overall has kept me away from the surgeon. As far as short bowel syndrome, I have had about 4 feet taken out and I don't have short bowel syndrome yet. So at 14" you have a ways to go. That's not to say that it isn't something that you shouldn't worry about, but you aren't there yet. My Mother did have short bowel syndrome but she had a lot more taken out. Her first resection was in 1965, long before the doctors realized that they needed to preserve as much bowel as possible. They just cut and cut and cut. So by the time she had her third resection in 1996, she really didn't have much left to give. Doctors are much more aware now and try to preserve as much as possible.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 3/5/2009 7:39 AM (GMT -7)   
I've been on Imuran for almost two weeks and I am still not sure if I want to stay on it. My doctor talked me into taking it b/c Asacol doesn't work for me and he doesn't want me to end up steroid dependent, but honestly I am terrified of the side effects.

The first week while on Imuran went really smoothly. However, this week, every time I take it, a few hours later I get upper abdominal cramping/tightness, nausea and d. I take it at night with dinner, and I am on a low dose of only 50 mg. If these side effects continue, I am going to discuss stopping it with my doctor.

Honestly, if I had the option, I'd start with Asacol. If that didn't help, then I'd switch to Imuran. That being said, if you choose Imuran, it has helped so many people with Crohn's and the majority of the people do not get the negative side effects. Best of luck to you!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/5/2009 7:46 AM (GMT -7)   
I agree with catpower, I would try the Asacol and see how you fare. I have had this dd for over 30 years and have continually tried to stay with the lesser meds as long as possible. Imuran/6mp are good medications, and I know they will be available should the Asacol stop working, but will continue with the Asacol as long as I can. JMHO
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/5/2009 8:29 AM (GMT -7)   
Nanners, I've been waiting for your reply. My question is: How do you know if Asacol isn't working? I've been on it since 2001 and I still had surgery. I've seen the pictures of what they removed and it was not a pretty site.(Hot dog in a brat bun) How much Asacol do you take? I take 3 pills in the AM and 3 in the PM. Is this enough?
The doctor rated drugs for remission as follows:
Prednisone- Best, but really bad long term
6MP/Imuran- Best drug to stay in remission
Asacol-Good, but one step lower than 6mp/Imuran
I did ask about Remicade and he said No! Too many side effects.
I also asked if he had heard about LDN/Naltrexone. He never heard of it.
I want to stay in remission as long as possible,but I really don't want to sacrifice my body to the toxins of some of the drugs and worry about other problems that could develop.
Thank you for listening to my constant babbling/whining.

Wolfie
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, B-12 injections every 8 weeks.

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


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 3/5/2009 9:15 AM (GMT -7)   
I would say there are two benchmarks to determine the long term effectiveness of a medication for Chrohns -- has it fairly consistently prevented or reduced symptoms over time and has it helped you avoid complications like strictures, fistulas or surgery? On the latter your asacol regime did not do the job. Not sure about your persistent symptoms, but remember that we can be relatvely symptom free over time and still ahve cumulative damage, which you apparently had. I still see imuran/6mp as the best long term for maintaining remission of the asacol family of first line drugs did not do the job. And save for those few who react with suppression of marrow and white cells, these drugs are seldom what you describe as toxic, especially at the low doses we typically use.

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/5/2009 9:30 AM (GMT -7)   
Thank you Mike. What about Alcohol and Imuran? I don't drink that often or that much. I do like to have a beer or two every no and than.Also a big Margarita fan too.
I did ask my doctor if the Asacol was working for me and he said yes.
I do find it hard to believe since I did end up having to have surgery.
The doc said i don't have to switch right away, he said to use up my expensive Asacol first. On a good note Imuran will cost a lot less. The cost for a 90 day supply at 100mg/day would be $90. Asacol is double that. What about taking Folic Acid, Multi vitamins, and calcium with Imuran. I assume it is safe to take those.

Thanks for the replies!!!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/5/2009 9:50 AM (GMT -7)   
Yes you can take those things with Imuran. I am not sure about the alchohol though, as I don't drink. I am surprised you can drink. Most of us Crohnies it makes us sick. Have you had any alchohol since your resection? The reason I ask is I noticed that some things didn't agree with me after the resection, that I hadn't had problems with before the resection.

I have the stricturing (scarring) type of Crohns. I have had two resections, the last being in 2005. Asacol has kept things quiet for me since. But as I told you before, should things change I know the 6mp or Imuran will be available for me too. IMHO
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 3/5/2009 10:15 AM (GMT -7)   

I don't drink alcohol, so I really can't comment, but there is no label on my 6mp bottle that says no alcohol.

And you are right -- you do not need to make this decision today. A good rule of thumb for me, assuming you are going to a GI who treats a fair amount of Crohns patients, is to ask "How do most of your patients with disease comparable to mine do long term on these two medications?" Yes this is a very individual disease, but if a GI tells me that most of his comparable CD patients do pretty well in imuran while a lot of those on asacol have more complications, that tells me something, just as the reverse would.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/5/2009 11:58 AM (GMT -7)   
Good advise Mike. I will ask my GI that question.
Nanners,I have not had any alcohol since my surgery. I'm still on low residue diet until at least 3/26/09. I'm taking everything really slow at the moment.
Nanners, I'm not sure if I've asked or if you've told me,but what part did you have a resection? The reason I ask, is maybe if yours was in the TI where mine is and your only on Asacol. I might just be okay on Asacol. What dosage are you on? I wonder if they can bump it up to a stronger dose? I'd rather stay on my Asacol with no side effects rather than jumping to something with possible side effects.Not that Asacol doesn't have any,but at least I don't have any.

Thanks
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

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

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