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Sick and tired after 27 years

Hello everyone,

I'm to the end of my rope on this disease. I've tried all the medicines and nothing works anymore. My GI surgeon thinks removal of the colon is my best option. Please weigh in with you opinions and if you had surgery and if so, are you glad you had it done.

Thanks!!
 
Hello & welcome:

I have not dealt with CD nearly as long as you have as my daughter was diagnosed just over five years ago, but she has been through a long list of meds and the latest (Remicade) is no longer working, so I can relate to your feelings of frustration there. We have found taking vitamins, especially Vitamin D3 & Folic Acid, have helped her the most. Check out http://www.crohnsforum.com/showthread.php?t=23826. Have you tried any kind of vitamin therapy?

My thought with my daughter is that we will do anything we possibly can to avoid surgery. The decisions that we need to make when dealing with this disease are not easy and, unfortunately, there is no one right answer for everyone.

Take care.

Lisa
 
Sorry that you are having so many problems. Is there any way that you can either get into a clinical trial or ask your GI doctor if he or she could prescribe you Stelara off label? I have heard it has helped patients with severe Crohn's who have tried all the other medicines and had no relief.
 
I'm on Asacol, Imuran and Humari every week now. Thats 19 pills a day. I can't take Predisone anymore, it caused me to loose my vision. I think the medicines are over and done. I developed a immunity to the Remicade and I think the meds I'm on now just don't work anymore so surgery is my only option. I've tried all kinds of diets, don't eat this and that books so I've hit a wall.
 
I'm on Asacol, Imuran and Humari every week now. Thats 19 pills a day. I can't take Predisone anymore, it caused me to loose my vision. I think the medicines are over and done. I developed a immunity to the Remicade and I think the meds I'm on now just don't work anymore so surgery is my only option. I've tried all kinds of diets, don't eat this and that books so I've hit a wall.
Even more reason to check into vitamins. My entire life I never took vitamins as I thought they were just a gimmick & a waste of time, but after I've seen how they have helped my daughter deal with Crohns, her improved health while only taking vitamins convinced me otherwise. Check out the Vitamin D Council's site or their fb page. Just amazing what Vitamin D can do.
 

Cat-a-Tonic

Super Moderator
Hi Sick of this, welcome to the forum. Just a thought, have you looked into stem cell treatment? I believe two of the main qualifying factors are that you have to have been ill & diagnosed for at least 5 years, and that you have to have failed all of the mainstream medications. From your posts, it sounds like you fit the criteria. It's worth looking into as an alternative to surgery anyway. Take a look at this thread for a lot more info:

http://www.crohnsforum.com/showthread.php?t=22259

I hope that was helpful. Again, welcome to the forum!
 
They have looked into stem cell research but still not a option at this point. I went to the surgeon on Friday. I have had seton surgery for the fistula and my whole bottom is still hurting. The bathroom trips are terrible with this surgery. Bottom line, the colon, rectum and anus is coming out. I don't know how much more I can take. I pray it doesn't show up somewhere else.
 
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