6-MP and not happy. Help?

[Ness]

Some people straight out are going to maybe call me
crazy or may disregard my post here. Currently getting near the end of my run on steroids (5mg) and currently on 100mg of 6-MP. Not to mention, Prilosec, Lorazapam, and Supplements.

I don't believe in this treatment. This is CRAZY. Regardless of getting my blood checked every month, it just can't be the only method and I can't come to terms with believing it is safe. Chemo therapy drugs?

Yet at the same time I feel so hopeless. I'm beginning to feel crummy again as the steroid dosage is getting closer to zero. This is my second flare in a year and 1/2. I'm suffering bone density loss from steroid treatment. I have tried azathioprine. My flare may not be coming back, I'll know soon I suppose.

Docs want to avoid steroids due to the Osteopenia. I refuse to try Remicade or Humira. I have a friend with Crohn's who sees a fairly well known nutritionist. She found no luck in medication, but her nutrition and diet have kept her pain free.

I know my doctor is going to tell me diet has no proven correlation to Crohn's. They aren't trained to believe in nutrition as a way of healing. I respect their beliefs and methods but I don't know that they are for me.

I literally am in tears today. If anyone can identify with this struggle or offer hope through nutrition - Hope, in general, is much needed today. Thanks for reading!

 

[Johnnysmom]

Ness,

My son was on steroids for 3 months and has been on 6mp since October. I can tell you that the steroids while putting his inflammation markers normal very quickly did leave him feeling crummy. As he tapered for some reason some of the side effects got worse. I wondered if he wasn't just dependent on the steroids to stay in remission but my son's nurse said his body was adjusting and what he was feeling was normal. He was tired, yet could not sleep. He had headaches, occasional nausea and his stools loosened up at times too. He was often in tears and just didn't feel good.
It took about a week after he tapered to start feeling better and slowly he got back to normal. His 6mp dose has had to be adjusted many times too and it took a while to get that right. But now I can say he seems to have no side effects, sleeps well, feels great and hasn't been sick all winter when many of his classmates have. He actually seems to feel much better than he did before he was diagnosed.
I would say to hang in there a bit longer. It really is a process and it can take a long time not only to get a therapeutic dose in your blood stream (3-6months) but it can also take a while to get that dose right for you. My son was on 6 meds in the beginning and now just takes his 6mp and allopurinol which helps him metabolize it. I think a lot about how this drug is not safe and it scares me to give it to my son. But, I think it is safer than not treating crohn's. If your Dr. monitors your blood closely (I think every 3 months is normal once you are stable) then the drug is really pretty safe. It has been around for 20 years, and they have learned a great deal about how to avoid the adverse reactions they often saw in the drug when it was first dispensed. The risk of lymphoma is still there but that generally is with long term use (more than 3 years) and with males. There are new drugs coming out that hopefully will be safer and better understood and I am hoping that my son won't have to be on 6mp long term. It might give you some time to investigate other drugs or nutritional therapies.

I hope this helps. I know it's hard. Hang in there.

(((((Hugs))))))
Tiffany

 

[Ness]

Very sweet of you to chime in. Thank you. I am 26 with a supportive family/girlfriend and can only imagine how difficult it must be being the bystander, having no control and little to no ways of helping us blessed (sarcasm) with Crohns! Thank you

 

[PaulsPain]

I definitely know the feeling. I went from not wanting to put anything foreign in my body to now being on a Azathioprine/Remicade cocktail. But the meds, specifically Remicade, has given me my quality of life back at least for now. It took me a long time(~5 years) to be diagnosed. During that time I struggled with large chronic fissures that had me in pain/spasms almost all day every day.... Not a fun existence.

Azathioprine I viewed as the lowest risk when deciding to start treatment. My WBC still yo-yo's on it, so I have a blood draw every 2 months instead of 3 because of it. I have been on it for over a year now. A co-workers wife has been taking it for a long time without any ill effect. I also have hope that they continue to develop lower risk drug therapies.

I wonder about diet all the time. But in my case I don't think I could control it with diet alone since I have fistulizing disease and it was progressing until I started treatment. Clearly there are a lot of success stories with diet alone. I have always eaten very healthy - lots of veggies, fruits, no processed garbage. The other issue is I LOVE to eat and cook. I guess if somebody told me to eat X Y and Z and I would be cured I would do it in a heart beat. But so far it seems no matter what I do diet wise it doesn't have a lot of impact. I do have foods I know I have to avoid though....

I hope that you find relief.

 

[xraygal65]

:soledancelease read the following book 'Breaking the Vicious Cycle" BY ELAINE GOTTSCHALL..iT IS A SPECIFIC CARBOHYDRATE DIET FOR FOLKS LIKE US W/CROHNS, UC, DIVERTICULITIS, CELIAC....I HAVE NOT TRIED IT YET...THE BOOK MAKES SENSE, BUT THE DIET WILL BE A LOT OF WORK....MY DAUGHTER-IN-LAW IS A CHIROPRACTOR AND SHE RECEIVED THIS INFO FROM ANOTHER CHIRO WHO IS A PT OF HERS..THIS OTHER CHIRO HAS BEEN ON THE DIET FOR 17 YRS AND DOES NOT TAKE MEDS FOR HER CROHNS NOW....I ORDERED THE BOOK FROM AMAZON...IT DOESN"T HURT TO READ IT..ALOT OF IT MAKES SENSE...i HOPE THIS HELPS YOU IN SOME WAY...
BLESSINGS,
XRAYGAL

 

[lowone]

I have been on 6mp for a week now so not enough time for it to build up to usefull levels.... I forgot to take my prednesone & lialda yesterday morning (was running late to work) and wow its impresive how bad that made me feel! by 3pm I was feeling rundown. At 5:20 I meet some friends for dinner and I felt cold, half way through dinner I was freeeeezing and felt sick and didn't finish dinner. Finally got home and took a half dose~ of the prednisone (didnt want to take a full dose then take another full dose 12hr later) and within 45min later boom completely normal agian... I am mid taper and am at 15mg, makes me very aware that I am fully dependent on it and scares me for how the rest of the taper is going to go!

My regular GP guy is scared of the 6mp too and wants me to seek out alternatives... So not only are you not alone in your fear of the chemo druginess even my regular doctor is scared of it. GI doc thinks its fine.

I don't know what to think, I just know almost anything is better then the bad flare days so will do/try whatever folks tell me to :/