HELP!!!!!!!!!!!!!!!!!!!

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kevin LEE
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/26/2008 7:49 PM (GMT -7)   
help with info and prayer!   my sweatheart has crohns, and is taking a ton of pills in conjunction with the chemotherapy pills 6-mp....i love this girl with all my heart, and tryin to search for answers for her!   she has a fisculia and her dr. says she will have to take the chemo pill  the rest of her life.  this is insane, her hair is falling out and the pill completely drains her of all energy!  with the chemo pill, she takes 36 pills per day, im sure there are lots of people who do this?  im looking for encouragment and wisdom on this forum!   we have tried probiotics, and dr. says its not good , because of her current meds.   im at a loss for words, however have strong faith in the lord!!   ...tryin to look for any and all wisdom with anyone who would like to share their info and advice with me...thanks in advance, and thanks for reading cool cool cool cool cool cool cool cool

minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 9/26/2008 8:16 PM (GMT -7)   
I've never heard of those kinds of side effects with 6MP. I took it for a few months when I had a fistula too. If you and your girlfriend are not sure about the treatment she's getting you might consider getting a second opinion. Stay strong, it's not always easy.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/26/2008 8:19 PM (GMT -7)   
When you say her doctor says, what kind of doctor. If she has crohns she should have a GI that is well versed in crohns. There are more meds out there than 6-mp. I am on remicade and methotrexate and they seems to keep me on an even keep most of the time. Perhaps she could change meds. You have to push these doctors sometimes. If you are not happy with how you feel, you have to make sure the doctor knows. Dont just take it and hope it gets better.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


kevin LEE
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/26/2008 8:33 PM (GMT -7)   
she has a gi dr. they say he is a good one?? she has tried many meds....they are currently trying to take her off pred. ....she takes pentasa among so many others. i cant keep up with all of them, so im not so sure of all the names. she doesn't want to resort to remicade either, due to fear of some bad stories. i know all drugs do well for some and some others they dont work. she had a major blood infection at one point and almost died. body was septic, and white blood cell count was around 49,000....she currently has a urinary tract infec. that got into the kidneys and is not going away with the meds dr. has her on. tell you what,. i hate this disease!! i feel for all that have it! i hope she gets delivered from it soon , and it goes into remission!

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/26/2008 8:42 PM (GMT -7)   
One thing - I've had several Gastroenterologists in my four+ years as a crohnie, and they ALL told me that probiotics were absolutely necessary. I'm not saying my GI's were right and her's is wrong... that just strikes me as odd. I was on 6mp and probiotics for a short time, and the doc is the one who put me on both at the same time. I guess her doc saying that makes me question his tactics?

Bottom line - if her GI's approach isn't getting results, it sounds like it might be time to get a second opinion on her situation. I would research other docs in the area and go see one for a good sit-down-don't-rush-me-out-of-the-office talk. Have some notes ready, along with questions, and don't leave until you're satisfied with the visit.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/26/2008 8:56 PM (GMT -7)   
I'm guessing that she is taking antibiotics and the doctor feels that since they would destroy probiotics, it is not worth taking probiotics. That is perhaps what happens, but unless you take probiotics, only a few undesirable gut bacteria that resist antibiotics will remain and then there is trouble from the lack of bacteria that sooth the stressed out gut.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/26/2008 9:08 PM (GMT -7)   
Well, our GIs--and I've met 4 in a little over a year--don't advocate probiotics (and my son was NOT on antibiotics for his Crohn's, our GIs just don't think they're "proven" yet). I chose to have him take them anyway!!! Too many people here report great success with them and now studies are beginning to support their use for Crohn's.

Also, are you aware of the Maker's Diet or the Specific Carbohydrate Diet (SCD)? Many people have positive results using this approach to controlling their Crohn's. Heck, it's worth a try! The SCD has tons of online resources and SCD compliant cookbooks available. Read the book "Breaking the Vicious Cycle" by Elaine Gottschall if you want to understand the foundation of the diet.

I hope she feels better very soon, kevin LEE! It sounds like you love her very much! I will say a prayer for her! :-)
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 9/27/2008 2:15 AM (GMT -7)   
Hi, Well i was on a 6mp drug (Imuran) I never had hair lose with that drug. i don't need that drug any more. do to the remicade that i get every 8 weeks.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


beca123
Regular Member


Date Joined Jan 2003
Total Posts : 224
   Posted 9/27/2008 10:13 AM (GMT -7)   
I was on 6mp, and I did have hair loss. A good bit when I first started it in the hospital through an IV. Once I started taking it by mouth I didnt notice it as much. And her tiredness may just be from the disease itself. I was on the 6mp for a few years. Then I started getting Remicade because I would get sick when they would try to take me off the Prednisone. I have also heard a few bad stories about Remicade but, I have been on Remicade for almost 7 years and it has kept me in REMISSION for those years. I was not responsive to other medicines which is why I started the Remicade. After being on Remicade for a few years a study showed that a combination of Remicade and 6mp was causing a certain kind of tumors so I stopped the 6mp immediately. I have been off of ALL medicines except the Remicade and in REMISSION for almost 4 years now. I know it is hard at first to deal with Crohns. But many people(including ME!!!THANK GOD!!!) get to where they are completely healthy with the right medications. And I can see you are a religious person, so here comes the Christian answer. Pray, alot. He will get her through this. I know it may seem hard to trust during hard times but, He always has a plan and He will always carry you through. Stay strong in the Lord. He will never leave you. Good Luck and God Bless.
Beca
 "The Lord wont give me more than I can handle,i just wish he didnt trust me so much!"
  "let people be people before they are patients"


beca123
Regular Member


Date Joined Jan 2003
Total Posts : 224
   Posted 9/27/2008 10:19 AM (GMT -7)   
And another thing, I dont know how well your "sweetheart" has been eating but one thing when I was extremely sick, my GI told me to drink ENSURE. They even have one for Immunity I think, because the 6mp is an immune suppresant. They dont taste that bad either. Well the Chocolate one doesnt. They even have a store brand at most Walmarts which is the same thing and dont taste that bad either. These drinks help restore some of the nutrients lost when one is suffering from Crohns.

These drinks were a big help to me because when I was sick, I simply DIDNT eat. It hurt too bad to eat, and when I did, it was never something of nutrition. It was like mashed potatoes, that i knew wouldnt hurt me.

And if she has a problem with milk products the BOOST drinks are fruit based and have the same effect, nutrition wise.
Beca
 "The Lord wont give me more than I can handle,i just wish he didnt trust me so much!"
  "let people be people before they are patients"


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/27/2008 10:46 AM (GMT -7)   
Probiotics are simply good bacteria and should have no impact what so ever with the meds she's taking or any meds for that matter...VSL3 has been proven to be beneficial on a study that was done specifically on UCers with the majority going into remission because of VSL3, and the rest of the test subjects noting at least some improvements with symptoms, not a single person in the study had a negative impact and they all found improvements to some degree.

While on antibiotics it's key to take probiotics at least 2 hours after you're done taking your antibiotics for the day or the antis will kill off the pros, but whether on antibiotics or not, it's essential that IBDers take a good probiotic daily and indefinitely, flaring or not to help keep the gut flora balanced since IBDers tend to have bacterial over-growth issues which exacerbates IBD symptoms.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/28/2008 12:51 PM (GMT -7)   
Hi and welcome to HW . I know crohn's can be a bit overwhelming at times . Some of us like me follow a low residue diet . We also seem to be low in B-12 at times so I take a B-12 shoot once a month . I would think the chemo pill you mentioned is a lesser dose then patients with cancer. I lost some hair too when I was really sick and it grew back in how much hair has she lost?I too have had fistula's and have had them close or at least one with the Remicade and one was removed threw resection. I think what her Dr. is porbably telling her is that she will probably need meds most of her life. Read some here it might help and some of us have mid, moderate or severe diagnosis . So we are not all the same in our symnptoms at times or porblems as it effects different parts .from mouth to rectum but not all at the same time. Hope this has been a little hepfull .Your sweetie is lucky to have a caring mate. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


kevin LEE
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/29/2008 2:34 AM (GMT -7)   
any special type of probiotics i can rec. to her? thanks again for all your input and kind words

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 9/29/2008 7:52 AM (GMT -7)   
Kevin - if she is going to try probiotics make sure you avoid the kind that have FOS (Fructooligosaccharides - bad sugars for Crohnies) - they stay in the gut and ferment and will "feed" the probiotics, but they will cause her terribly painful gas.

6mp never made me lose my hair, but it DID make me feel totally wiped out and exhausted all the time. The side effects were hard to deal with.

Has she considered a change in diet? She might be too sick for that right now, but for me SCD was a complete and total answer to prayer. I noticed an immediate improvement in the first week. I know many people have been quite successful on the diet - it's worth checking it out and it certainly can't hurt.

Remicade might really help her - I know it has helped MANY people who suffer with fistulas. I don't know what bad stories she has heard and it IS true that there is a chance of having a "reaction" to it, but I took remicade for 6 &1/2 years with ZERO reactions and I even had 2 babies while taking it. Maybe she should research it some more. It really could be a miracle drug for her.

Sorry if all of this sounds like propaganda. We are all so different and different things work for each of us, but for ME - remicade and the Specific Carbohydrate Diet were the two things that I *KNOW* God sent my way. I will pray that she finds what works for her. You are so good to be so interested in her welfare.

Stef

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/29/2008 10:25 AM (GMT -7)   
The one I use (with some success) is called Primadophilus Reuteri made by natures way, only one/day is needed, it also aids with lactose intolerance issues, high cholesterol and for woman, vaginal health...only downside is it must be kept cold (in the fridge), but it's very affordable, in Canada I pay 29.00 for 90 caps which lasts me 90 days.

It has guaranteed intestinal release and only contains a little potato starch for preservation, no other junky stuff.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)

Post Edited (pb4) : 9/29/2008 11:30:56 AM (GMT-6)


kevin LEE
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/29/2008 10:56 PM (GMT -7)   
on the diet thing, wright now ..she has days when nothing appeals to her tummy. she resorts to crackers, and ensure drinks. we are gonna get through this , i feel it in my heart!!!!!!!!!!! guys and ladies, the lord brought this beautiful woman and i together to be soul mates.....you should see our babies! they are the most handsome , welbehaved boys in the world. i love this woman, and am seeking education on this disease so i can learn learn and learn. i will let you guys know her progress as we go along. i am going to look into those probiotics asap..thanks again for all the input and prayer. i am truly truly grateful!!!!!!!!!!!!!!!!!!!

kevin LEE
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/30/2008 10:16 PM (GMT -7)   
are any of you on this forum having to resort to pain meds daily to reduce the amount of pain you are in?

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/1/2008 12:27 PM (GMT -7)   
Kevin Lee, I have had to take pain meds for the full 30yrs I've had this. I think your wife is blessed to have a man who loves her so much. The Lord is good. When the pain comes it is almost unbearable. 36 pills? Is that what you said? WOW!! I've never hard to go on that much stuff. I assume by chemo drugs you mean Azathioprine and 6-MP? I ahve been on aza for many years now. Honestly it's the only thing that has kept me off the surgeon's table! I lose hair here and there. I am weak alot, but I still function virtually every day. I need a surgery now for 2 strictures, but it's been 23 yrs since my last, so that's pretty good.

God will use this to strengthen you both. He certainly has in my life. He will use it for His purpose. Never forget that. This is a tough disease, and there are no easy answers.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong

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