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Azathioprine- Remicade- or Resection???

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Ulcerative Colitis
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Posted 11/9/2011 10:35 PM (GMT 0)
I was diagnosed with UC aug. 1999. Since my diagnosis 12 years ago, I have taken azulfadine, asacol, lialda, canasa, and more steroids than Arnold Schwarzenegger. I have been taking remicade treatments since dec. 09 and for 1 1/2 yrs I was free of symtoms. I have been getting treatments every 8 wks but my symptoms have gradually been returning before my treatment is due. I had my last treatment on fri, oct 28 and barely made a week and symptoms are returning. My Dr wants me to start azathioprine with intentions of getting off of remicade. I have only taken the remicade on an 8 week frequency with the exception of the loading doses. I am reluctant to give up on remicade and start yet another drug before exhausting all options with remicade. The remicade worked so well that it is a hard decision to start azathioprine knowing the risks linked with taking both of them. I can't say that I have the worst case of UC ever but I am just sick and tired of being sick and tired. Leading me to the option of resection. I always said that resection would never be an option but I am strongly considering it now. I am 38 yrs and it seems like the medications are just prolonging the inevitable and if that is the case then I would rather get over with when I'm 38 instead of 48 or 58. Can anyone provide any insight, success stories, or miracle cures?
Posted 11/10/2011 1:59 AM (GMT 0)
UC-12 years, I too am sick and tired of being sick and tired. I am 52, kids are grown and gone and now I want to enjoy the rest of my life without pain and continually worrying if there is a bathroom close by and will I make it there on time.

I am seriously considering resection as well. Especially now that it can be done lapriscopically. I was diagnosed in 1993 and after my initial c-scope was told that I had had the disease a lot longer. Being a smoker 14 years prior, the nicotine had diminished my symptoms greatly therefore they didn't show up until after I quit smoking

I am hoping that someone who has undergone this surgery would reply and give us some insight to the pros and cons.

Hope your symptoms get better soon.
Posted 11/10/2011 3:06 AM (GMT 0)
What dose of rem do you take?
Posted 11/10/2011 3:22 AM (GMT 0)
I feel the same way, I think I would prefer surgery over all these scary meds
Posted 11/10/2011 3:36 AM (GMT 0)
i had the same problem with remicade, i was on 6mp at the same time, and it just stopped working, and i went into surgery. i have a permanent ileostomy now (the bag)
I'm not sure what you mean by resection, but i don't think a dr would just take part of the colon out, that won't solve the problem, and i would be wary of any dr who suggested that.
As for surgery, my life is awesome now, my only regret is that i didn't do it before i wasted 8 years with UC.
good luck hope you find something that works for you!
Posted 11/10/2011 8:18 AM (GMT 0)
Summer, how long was your recovery? I am worried because i have a vacation planed in april and i am starting to flare on 2.5 pred as i go for my 4 Remicade, which i flared after 1 and 2 without steroids. One of my questions i will have for the surgeon is about output. I am not a heavy woman, but when I am on pred my stools are formed but there is so much in a day, so much that I am ambarrased to say the length if you added them up. Is that others experience on pred, or will I be emptying my bag more than most. Does eating less change the out put by much.?
Posted 11/10/2011 1:23 PM (GMT 0)
8 weeks did not work for me. My symptoms were starting back way to early in between so I was moved to every 6 weeks and it does much better. I can tell at the 5 week mark the time is nearing.
Posted 11/10/2011 1:29 PM (GMT 0)
With Ulcerative colitis, resection is not advisable. Sure you can have a portion of your diseased section removed but the body will just attack the remaining portion. That is why if surgery is considered, than the whole colon should go if one has Uc. If any doc says that they are doing a resection, don't walk, run to get another doctor. However, resection CAN be done for people with Crohn's disease.

Like Dr A suggested, perhaps go to every 6 weeks instead of 8?
Posted 11/10/2011 7:03 PM (GMT 0)
HiItsNick- I have been getting 5 MG every 8 wks but will be getting the next couple of treatments on a 6 wk cycle, and from there I am not sure. Just like Dr-A, around the seventh week I knew it was getting close to my next treatment because I would feel extremely tired and drained.

summerstorm/Red_34- Thanks for the information on the resection. Do you know of any UC cases where a resection was performed?

Has anyone taken Azathioprine? I was told that it was similar to 6MP but not the same. Any bad side effects or reactions with either to speak of?
Posted 11/10/2011 7:45 PM (GMT 0)
I think they used to do resections in the past before they realized that was futile.

I'm on 6mp. Aza breaks down to 6mp (Mercaptopurine) in the liver. 6mp is half the dosing of Aza for example 100mgs of Aza is equivalent to 50mgs of 6mp. The main side effects are fatigue, headaches, nausea and hair loss. Once the body gets used to it, these side effects should lessen or cease.
Posted 11/11/2011 12:25 AM (GMT 0)
I'm seeing my doctor tomorrow. He has discussed total removal then creating an internal pouch so I don't have the external bag. This would be a two part surgery where I would have the external pouch for a few months then he would do another surgey to connect my small intestine to my anal opening and create a pouch with part of my small intestine. First time he mentioned this, years ago I said no way, I can deal with this. Well 18 years later I'm rethinking the whole thing. May a few months of discomfort and annoyance with external bag isn't so bad if I can gain many more years of normal life. Not sure I even remember what normal life is anymore.
Posted 11/11/2011 12:39 AM (GMT 0)
I was in the same boat. Have the surgery and be done with it. Knowing what I know now that I am on the other side, I would have skipped all the nasty drugs and unrealistic diets and when right for the surgery. But on the same note, at least I tried everything. Oh and as the others mentioned you cannot do a resection with UC. The whole colon has to go. I had J pouch surgery. Life is great again with NO UC!! All the best to you.
Posted 11/11/2011 12:50 AM (GMT 0)
Oh bye bye UC. I am so glad to hear that. My mother-in-law has a neighbor who underwent this surgery many years ago with no regrets. I want to talk with her to find out more. Thanks so much for sharing your experience. You don't know how much it has helped me. I've been stewing about this for years. Hard decision to make though.
Posted 11/11/2011 12:53 AM (GMT 0)
allswell-i had surgery april 17th, 2007, by june i was in the pool, in july at was at the beach. If you had surgery now you'd be plenty ready to go in april!
Recovery varies depending on a lot of things. Your age, your health when you go in, how much pred you are on, if there are any complications. recovery is usually 6-8 weeks. I was in the hosptial for 6 days, then i was at home and pretty useless for about a week or so. then i started getting having more energy. The main thing in the first few weeks is you can't lift so it's hard to do a whole lot. But i still felt better after surgery then i had the whole time i had UC. Recovery is hard, and the surgery is painful, but its sooooo worth it!
As for your output, obviously the more you put in the more that will come out. Different foods have different reactions for different people also. Apple sauce, for me, seems to triple in volume when it comes out, lol. And also, if you don't eat enough you will have lots of icky output, bile and acid and junk. You will just have to find what works for you. In the first few weeks you empty a lot while your body gets used to it. after that its usually 6-8 times a day, or when you go pee. I don't really think weight has anything to do with the amount of output, other than heavier people may eat more. And you won't be on pred anymore so that shouldnt have anything to do with the output afterwards.
good luck!
donewithuc-i realize that having a bag may seem like it would be annoying and uncomfortable, but its really not, its actually pretty nice. It won't take long until you forget its even there. Don't let the worry of having a bag keep you from getting jpouch surgery if thats what you would like.
Posted 11/11/2011 12:56 AM (GMT 0)

DonewithUC said...
Oh bye bye UC. I am so glad to hear that. My mother-in-law has a neighbor who underwent this surgery many years ago with no regrets. I want to talk with her to find out more. Thanks so much for sharing your experience. You don't know how much it has helped me. I've been stewing about this for years. Hard decision to make though.

Facing major surgery such as this is a very hard thing to wrap your head around. I did a lot of research on it plus I have two family members with J pouches. My sister has had her J pouch for 20 years now and my uncle has had his for about 12 years. Both of them have had no problems at all. So having them tell me it was going to be okay really helped me make that leap. It is extremely important to find a surgeon that has done many, many j pouch surgeries. Please feel free to email me if you have any specific questions. My email address is in my profile.
Posted 11/11/2011 1:02 AM (GMT 0)
Thank you summerstorm. I'm 52 and not as vein as I was years ago so the bag, on a temporary basis, isn't such a bad thing. However, I am very active, travel a lot for my job and just love to travel period. I'm scared you would be able to tell there's a bag under my clothes. (Still a little vane I guess :-) )

BTW love ur signature sing loudly and dance like a fool. Great zest for life.
Posted 11/11/2011 5:03 AM (GMT 0)
I had my surgery (chose a permanent ileostomy) a year ago for UC and am 100% happy with the results. The one infusion of Remicade I had gave me excruciating joint pain. I had to crawl around on the floor sometimes the pain was so horrendous. I am so thankful it went away once the drug left my system. At that point I was done with meds and was excited for my surgery. I am grateful that the j-pouch and permanent ileostomy surgeries are available to end the pain and suffering with this disease. I feel great now.

Done with UC- I am super active in all kinds of outdoor sports, and whether it is permanent or temporary, one can do everything with a ostomy pouch that they did before. Also, my pouch does not show under clothing. I am an education park ranger and am frequently up on stage in front of an audience leading nature programs. At ten weeks post-op I was already back to leading activities in my uniform which includes a fitted shirt that gets tucked into pants with a belt. One cannot tell I have an ostomy at all. I also wear all my old favorite jeans. Though I did choose to do some shopping for new clothes after surgery because it was fun, I would not have had to. All my pre-surgery wardrobe worked fine. One can't even see my ostomy pouch with my swimsuit: http://ostomyoutdoors.wordpress.com/2011/07/24/my-ostomy-is-going-swimmingly/
Posted 11/11/2011 4:14 PM (GMT 0)
Just a quick thought-being healthy helps with surgery, so increasing your Remi dose and lessening the time span may help you. My daughter has been at 6-7 week intervals and been on as much as 10mgs per kilo to get the disease under control. Might help for the short term.
6mp takes awhile to be therapeutic-think around 8 weeks.
best,
Posted 11/11/2011 7:20 PM (GMT 0)
DoneWithUC,

I had jpouch surgery 10 years ago for UC. Since then I have done 4 international long distance hikes (100-200 miles), hiked in and out of the Grand Canyon, backpacked in the Sierras, hiked the John Muir trail, hiked in Turkey, and Patagonia. I have also traveled through Chile, Argentina, Europe, Singapore, Myanmar, Vietnam, and Cambodia. Surgery has given me my life back. I am very physically active, take no meds, and get by just fine without a colon or rectum.

Best advice I can give you, consult with a top CR surgeon; one who has done many jpouches. You can get referrals at www.j-pouch.org I credit my surgeon for my life; he had done over 2,000 jpouches by the time I met him. He can do the surgery blindfolded, according to his nurse!

Sue
Posted 11/12/2011 12:36 AM (GMT 0)
I want to thank everyone for your posts. They really have helped me put things into perspective especially the ostomy bag. Dr. Said next steps for me would be prednisone, 6mp and/or Remicaid. I would have to see a GI to get 6mp and Remicade though as he would not administer them to me. He gave me the names of several GIs to go to discuss my condition. Outside of the afore mentioned drugs. Only other option is surgery. My doctor is a CR surgeon and he has been my only doctor through all this, going on 20 years. He has done many surgeries and is well known and respected in the area I live. Not to mention we have a great relationship and he spent almost an hour with me today explaining everything. There are not a lot of surgeons who would do that these days

I am going to talk to the GI doctors but I am not taking any of those toxic drugs. If I haven't had this disease for so long, I might consider it, but life is too short and quality of life is too important. Not to mention the longer one has this disease the higher risk of colon cancer. So...not having surgery is just postponing the inevitable but I need to get other opinions/information before making my final decision.

Also, my second husband is so very supportive, understanding and awesome. We've been married just over a year but been together 5 years. He has seen my decline over the past couple of years and he went with me to see the doctor today and will be there for me surgery or not. I have been blessed with wonderful children, new hubby and wonderful friends that are all very supportive. I know I will be in good hands whatever decision I make.

I really am glad I found this site. I've had no one to compare notes with. As far as I knew, I was the only one who had this disease. Everyone have a great weekend. I'm logging off for now and enjoying my weekend with hubby not worrying about anything.

Life is too short not to enjoy the little things in life that really make you happy :-)
Posted 11/12/2011 11:18 AM (GMT 0)
Thanks summer,
I have one consultation in a month, and want to talk to a couple more surgeons also.
Posted 11/12/2011 4:25 PM (GMT 0)
Imuran has worked well for me, Give it a try before going into surgery, but only you can make these tough choices.
Posted 11/12/2011 5:20 PM (GMT 0)
Donewithuc-I've actually been able to travel now, I've been on a cruise and to disney ad lots of other trips. I am probably the most vain person in the world, lol so that was a problem for me. If you want I can email you a few pictures. Just in case something happens and you find out you will need the bag longer, might make you feel better
Posted 11/12/2011 5:21 PM (GMT 0)
Donewithuc-I've actually been able to travel now, I've been on a cruise and to disney ad lots of other trips. I am probably the most vain person in the world, lol so that was a problem for me. If you want I can email you a few pictures. Just in case something happens and you find out you will need the bag longer, might make you feel better
Posted 11/13/2011 1:47 PM (GMT 0)
Summerstorm, thank you so much for offering to send pictures. If you are comfortable doing that, I would appreciate it. My email is in my profile. My vision of an ostomy bag is like the size of the bag they give you in the hospital for catherization. Big and cumbersome. I am also concerned about intimacy with my hubby after. Will this be a major turnoff for the both of us. Again, so much more research needed. I'm just glad I have the time to before making my decision as my c-scope was still negative for displasia.
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