Strictures, 6-MP and remission

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PhoenixReborn
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/31/2009 10:30 AM (GMT -7)   
Hi folks,

I was diagnosed a year and a half ago at age 35. I'm certain I've had Crohn's for at least eight years and suspect longer. Had an IBS diagnosis and so didn't pursue things until I ended up in the hospital with a partial obstruction. Pred is real bad news for me at high doses, I get aggressive, paranoid and really emotionally labile. Small doses are okay, but my body gets addicted fast and resists tapering for months.

I went the naturopath and alternative med route for a year. Really restrictive diet (no dairy, minimal gluten, low-fibre/low-residue, minimal eggs, etc. etc.) Got off the pred *without* resorting to 6-MP like my doctor wanted and currently take eight horse pills of Pentasa a day and 10mg of pred for a few days when I have symptoms of blockage.

I understand that I'm kinda weird as Crohn's patients go: almost no diarrhea ever. I tend toward constipation and have a stricture. I'm symptom-free most of the time but have probs during my periods and sometimes get partial blockages every few months. Two days of killer cramps, usually some vomiting and fainting at the height of it and another couple days to recover. Catching it with pred early helps. I avoid the hospital due to zero desire for high doses of steroids or long tapers.

Anyway... Doc says that he still wants me on 6-MP and that I'm not fully in remission, not that sick, but not well either and that all we are doing is keeping a lid on the pot and dealing with boil-overs with the pred. I'm scared about side effects and risks, and especially low energy as I tend toward anemia anyway. I'd rather not stress my liver to death, thanks. I dunno. It seems like a lot of risk and problems in order to solve something I find mostly tolerable. It isn't like I'm dealing with lots of diarrhea or pain. How would I even know it made it better? What's full remission anyway for someone with few symptoms most of the time?

I'm feeling overwhelmed and alone about the decision making. I'm pretty non-interventionist as a general rule and find that one intervention leads to a more invasive intervention, leads to... and I'm not sure 6-MP is really going to be all that much better than where I'm at now, except with tons more medical monitoring, etc. Gah. Mucking around with my DNA, RNA, and immune response... is this really necessary?

Sometimes I think I should just have surgery on the stricture and then take extra special care of myself afterwards, keep the diet and lifestyle changes and hope I'm one of the lucky ones.

Any thoughts?

Thanks,
Dimitra

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/31/2009 11:28 AM (GMT -7)   
Well I am a firm believer in maintainence meds. I learned my lesson the hard way, with an emergency resection. My personal belief is that diet and medication should be considered as complimentary of eachother. I did not take maintainence meds after the first resection and ended up with another surgery only 3 years later. So I am a good girl now, and ALWAYS take my meds. And my prize for obeying has been remission for a few years now. Many other folks on this forum have been in long term remissions with using 6mp.

Have they said what the stricture is made up of? If it is scar tissue then no medication is going to heal that and surgery is generally required. If it is comprised of inflammation then medications can heal it. Either way you go, you need to remember that Crohns is a chronic and incurable disease and needs to be treated at all times. So should you have surgery, then afterwards is the time to modify your diet and take a maintainence med.

I am currently in remission and maintained solely on Asacol. Hope that helps some.

Hugs
Gail*Nanners*
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"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/31/2009 11:44 AM (GMT -7)   
Being non-interventionist is fine, but you've said yourself that every three months you are vomiting, fainting and are sick for several days. Do you think taking medication is worse than going through that? Prednisone even in low doses sporadicly is not good.

I get the feeling that you know you should be taking your doctors advice and need some support in doing so. So, as a previous happy customer of 6MP I think you should take it.

Regarding your liver, if the tests show elevated enzymes your GI will take you off of the drug and you don't have to worry about taking 6MP anymore.

Good luck.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 12/31/2009 11:55 AM (GMT -7)   
@Nanners it's not true that there is no help in case of scar tissue... antiMAP therapy heals scar tissue and the effect has been well documented

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 12/31/2009 12:03 PM (GMT -7)   
Dimitra,  i am similar to you in that the "D" has never been a part of my crohn's.  however, i have always been anemic.  i went went from the asacol for years to cimzia to a hospital visit for blockage to prednisone to remicade while still on predisone to now scheduling for surgery to remove the strictures (2 of them) Had a Ct scan with dye which confirmed that the strictures had not gotten any better since the blockage and were also just as bad since i started cimzia 2 years ago.  Dr said it is scar tissue and the meds were not working-in fact i have had a flare up every week since getting out of the hospital in oct.  in fact everytime they try and tamper me off the predisone, the flare comes 3 to 4 days later.  this is another reason why dr says surgery is next step for me-i have bad high blood preasure and the long term use of presisone is causing issues with my blood preasure and the meds for that (i take 5 different blood preasure medications a day!!!) 
 
I am excited for the surgery as i cannot live with a flare up every week.  My work requires me to travel and I have not traveled since Oct.  work is suffering along with me.  I have spoken to others who said they wish they did the surgery earlier.  I know i will still take matenance meds but i tool asacol/pentasa for over 12 years before i had the blockage so i am fine with that if the surgery give me a few more good years.
 
I hope this helps.

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 12/31/2009 12:20 PM (GMT -7)   
After years of Pentasa (obviously ineffective for me), my new gastroenterologist put me on 6MP in the spring of 2004--and I've been on it ever since, on a minimal 50mg daily dose. For me, the 6MP has been a godsend. Although I still have plenty of the usual symptoms, my scary-looking footlong stricture disappeared after a year of 6MP and a low fiber/low residue diet. I've had no side effects whatsoever from the 6MP. I get quarterly blood tests of my liver function, and I've had no problems so far (even with a family history of liver cancer).

I don't know if 6MP will be as effective for you, but I want you to know that, at least for me and at this dosage, you may not have to be so afraid of it. It should definitely have far fewer short- or long-term side effects than prednisone.

Good luck. I hope you feel much, much better in the new year, whatever the path you decide to take!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/31/2009 12:22 PM (GMT -7)   
Escalador I will have to respectfully disagree with you then:)  I am also not a believer in the fact that Map causes Crohns.  I believe there are too many variables for MAP to be the only cause.  After 35 years with this stinkin disease, thats one thing I have learned.
 
Respectfully,
Nanners


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"*
*~* http://www.healingwell.com/donate *~*

Post Edited (Nanners) : 12/31/2009 12:26:24 PM (GMT-7)


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 1/1/2010 4:52 AM (GMT -7)   
Nanners it doesnt matter what you believe or not because we are talking about facts, not theories... the effect of the 4 antibiotics therapy on scarr tissue has been well documented ... the same thing happened to a guy I know here in Croatia thats on antiMAP therapy for a full year (his scar tissue stricture is no more)...

http://www.fileshost.com/download.php?id=06D8728B1
here's a link to a small zip file I made containing 6 science papers on the therapy and its effects ... event the papers do not agree that MAP is the only cause, BUT the effect of the therapy is very clear... almost 60 % in remission in 16 weeks + scar tissue healing

Post Edited By Moderator (Nanners) : 1/1/2010 8:45:33 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/1/2010 8:53 AM (GMT -7)   
I activated your link, but I cannot open anything. I have had two resections because of scar tissue causing blockages. Yes they tried me on different meds hoping to heal it but NOTHING worked. Because if its scar tissue like I had, it was fibrous tissue, and nothing will heal those. And most folks ending up in surgery like me, its because no meds heal their strictures. JMHO
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"*

Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 1/1/2010 9:38 AM (GMT -7)   
photographs of intestinal condition before and after Rifabutin and Macrolide Antibiotics Treatment (RMAT) from an award-winning report presented at the Digestive Disease Workshop in San Diego, May 2000. To see a portion of that report and the accompanying photographs click here: www.crohns.org/treatment/responders.htm

Dr. Thomas Borody has provided "before" and "after" endoscopic photographs of intestinal condition of patients treated with antimycobacterial therapy. To see those photographs, click here: www.crohns.org/treatment/brtreat.htm

FACTS!


the fact that you had to undergo surgery is unfortunate but that doesnt mean it's the only option... hell, 5 months ago, I was told by 2 GI's and a surgeon that because of my blockage I have to have surgery but guess what... I didn't and I'm still alive... and yesterdays colonoscopy showed that I was right not to go under the knife ... I do not have a reason to lie to you... the links I gave you provide facts ... there is hope, even if you have scar tissue!

Post Edited (Escalador) : 1/1/2010 9:44:40 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/1/2010 10:31 AM (GMT -7)   
Escalador, chill I am not saying you are wrong and I am right. I am not going to argue with you. I know for FACT that strictures like "I" had, surgery was the only option as no treatments worked for me and I chose surgery because my quality of life was suffering and I was not going to suffer like that anymore. Each person is different, glad your treatments worked, but mine didn't. JMHO
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"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/1/2010 10:36 AM (GMT -7)   
So are you on RMAT therapy?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 1/1/2010 12:27 PM (GMT -7)   
@nanners i'm just saying that what you said was not the truth.. the fact that your doctors didnt look at RMAT therapy as an option doesnt mean that it isnt an option... maybe your doctors didnt know about it as is the case with many GI's

@Rider Fan it isnt clear is your question pointed at me or at Nanners... still I'll answer it... I am not and have never been on RMAT therapy... but I am considering it and I just gave my GI some material on it to read since I curently have 2 strictures (colonoscopy confirmed that the first one isnt from scar tissue but cant see the second one) and the 6MP and Pentasa arent doing it for me :) My "normal" next option would be Remicade or Humira but considering the possible side effects I am very reluctant about taking them since I'm not that desparate at the moment

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/1/2010 9:41 PM (GMT -7)   
I have had so many partial obstructions, I can't count them. At one point I was having them ever 2-3 months, and I got sick of that REALLY fast. My day to day quality of life was fine, but I couldn't plan anything because any day could be that day when I needed to go to the ER. I missed so many trips, events, etc. I switched GI drs after dealing with it for some time, and was put on remicade, which lessened the obstructions to about twice a year. Later I switched to Humira and (knock on wood) have not had an obstruction in over 2 years.

My strictures were mostly scar tissue but had mild crohn's involvement as well.

At the time when I was having so many obstructions, my surgeon was unwilling to do surgery because the obstructions resolved themself within about a week each time. I asked about surgery, and was willing to go that route, but that wasn't an option to me.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


PhoenixReborn
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 1/2/2010 7:20 PM (GMT -7)   
Thanks so much for all of your responses.

I'm thinking of trying the 6-MP while I'm still actually working at the hospital where my GI works - it will make all the blood tests easier until they get it settled properly. I finish this posting in June, I can see how I feel about it at that point - If I start it ASAP I should start seeing results by then. The side-effects scare me but hey, if they're horrible, I'll go off the stuff. Simple as that, nothing lost. Pentasa was supposed to involve nausea and dizziness and I only ever have that when I don't eat enough when I take it. Low energy would ruin me though - I'm a single mom with a very demanding kid.

Here's hoping it will work out well....

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/3/2010 9:05 AM (GMT -7)   
Sending good wishes your way PhoenixReborn!! Hope the meds help you.
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"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/3/2010 6:41 PM (GMT -7)   
Phoenix reborn, it sounds like the disease is festering away, and the downside of not using effective therapy is that scar tissue can be built, if it hasn't been built already. Damage, interfering with the absorption of nutrients, might not be reversible if not dealt with in time. With constant flares, it is doubtful you are ever truly in remission, if one defines remission as bringing Crohn's to a dead stop - no flares, no symptoms, no festering visible on a colonscopy or biopsy, no labs with high CRP or ESR, nada.
 
Surgery was suggested for my own daughter nearly four years ago. Her stricture was so tight that the doctor couldn't get into the TI with a scope. However, after treatment with diet and Entocort over the past years, the stricture vanished. If your own stricture, like my daughter's, is not made up mainly (or at all) of scar tissue, then surgery might be premature. I realize it's a tough call, and share your concern about side effects of 6 mp and Imuran. But consider surgery, by no means risk-free, a last resort.
 
Entocort might be worth considering - often, it is taken along with 6mp. You could try starting Entocort at the highest dose, 9 mg, and then decide after a month or so whether to introduce 6 mp.
 
If considering 6mp, then a TPMT test should be done. My daughter's GI tested her for the TPMT gene, which is really annoying, because you can have the gene but still have low TPMT activity, putting you at risk for serious side effects.  
 
http://www.labtestsonline.org/understanding/analytes/tpmt/test.html
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 

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