So I have tried pretty much about everything in hopes of getting this Crohn's in remission. I've been on remicade, humira, imuran, methotrexate, and cimzia. For a few weeks, I was doing pretty good on the methotrexate and cimzia. About two weeks ago, the symptoms came back but this time in my terminal ileum. My stoma started retracting and felt like someone was takimg a torch to it. Last friday, it got to the point where I couldn't hold anything down, so hospital bound I was. They pumped me full of solumedrol, cipro, and flagyl. I'm home now and starting a slow taper off of prednisone. They say that Crohn's disease is not a fatal disease, but I am starting to question that theory. I'm running out of treatment options and any advice would be greatly appreciated.:sign0085:
Running out of options here!
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PsychoJane
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Quite controversial but sometime considered, the cyclophosphamide may sometime be used. It's not common and right now it's mostly considered while doing the stem cell therapy. I came across a few paper that were talking they had amelioration linked to cytoxan only without necessarily doing the whole stem cell process.
My doctors are not so enthusiastic when I ask them about it. That drug is very potent but it has its list of side effects and therefore, the risks/benefits ratio is not as good as most drugs we are taking.
I took that drug in the past. At that time it was not for the Crohn but for a side effect vasculitis. I had very severe crohn before taking it... though, it was not affecting my small bowel and I got the whole colon removed just prior to taking this drug. I was med free and disease free for a long time after than. Was it the cyclophosphamide?? That, we don't know... but I know it's been observed already.
http://gut.bmj.com/content/53/7/1058.1.full
I suppose that if I was out of option I would not question it too much and try it again... even though too much exposition is not the greatest idea.
Don't give up hope! and well if nothing works, maybe it worth bringing that up to your GI and see what he thinks about it. I suppose you may get a weird look and well it's too dangerous for your bladder/kidney but maybe it's been documented better since (I received that back in 99) and maybe he/she won't find the idea too funny!
Good luck
~J~
My doctors are not so enthusiastic when I ask them about it. That drug is very potent but it has its list of side effects and therefore, the risks/benefits ratio is not as good as most drugs we are taking.
I took that drug in the past. At that time it was not for the Crohn but for a side effect vasculitis. I had very severe crohn before taking it... though, it was not affecting my small bowel and I got the whole colon removed just prior to taking this drug. I was med free and disease free for a long time after than. Was it the cyclophosphamide?? That, we don't know... but I know it's been observed already.
http://gut.bmj.com/content/53/7/1058.1.full
I suppose that if I was out of option I would not question it too much and try it again... even though too much exposition is not the greatest idea.
Don't give up hope! and well if nothing works, maybe it worth bringing that up to your GI and see what he thinks about it. I suppose you may get a weird look and well it's too dangerous for your bladder/kidney but maybe it's been documented better since (I received that back in 99) and maybe he/she won't find the idea too funny!
Good luck
~J~
Thank you so much. I had to write that one down bc it was more than a mouthful. lol. My appointment with my GI is next Tues, so Im sure I will be ambushing her with questions. What do you know about Stem cell therapy? From what I gather, it's rather costly and I do not qualify for most research programs bc I have had so many surgeries. Right now, I'm a hot mess. I have so much to live for (my daughter, Im a single mom). I've tried reducing my stress levels, thinking that is the main culprit. I swear, it never fails.... I get to feeling human again, and then BOOM I'm down again. I try not to absorb myself in my on self pity, but damn it's hard not too. At the moment, I am just living for today and pray that tomorrow is a better day. If you could, forward me all the info that you can on any other meds (stem cell). Thank you so much.
PsychoJane
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Walking next to self pity is really really hard at time, especially when you have to deal with big turns like these and when everything is pretty much a blurry zone ahead. It is rather difficult/impossible to remain strictly positive about it. Coping with disease like ours is a really big challenge and I think we are all allowed to feel pretty bad about our situation at times. Never give up though!
I'm really not a pro about the stem cell treatment. I know that some people on the forum went through it with great results. Mr.Ziggy I think and Effdee if I remember right. I'll try to find their threads and link them to you. I don't know if they check their crohnforum messages regularly but I suppose they would be in a better position to help you with your stem cell researches. If ever you want some publications about that, message me and I'll find a way to send these to you. I don't have a whole lot but I've got a few if I'm not wrong.
I'm really not a pro about the stem cell treatment. I know that some people on the forum went through it with great results. Mr.Ziggy I think and Effdee if I remember right. I'll try to find their threads and link them to you. I don't know if they check their crohnforum messages regularly but I suppose they would be in a better position to help you with your stem cell researches. If ever you want some publications about that, message me and I'll find a way to send these to you. I don't have a whole lot but I've got a few if I'm not wrong.
PsychoJane
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PsychoJane
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PsychoJane
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Let's just say that this alternative is not a walk in the park though. As I said, the cyclophosphamide is involved within the stem cell transplant. Hopefully there can be some benefit from the cyclophosphamide only without having to go through the whole process of stem cell. Maybe that could be an option if it is the case. On that, the GI should no more... even though it's not "conventional".
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Kswiek81,
Never feel like you are alone, you can always share your feelings here. We are all here for one another. There is a lot of research going on and access to treatments that have proven to work with chron's patients is being sought after...
I hope your appt with the GI goes well and she is open to the Stem Cell treatments PyschoJane mentioned.
Never feel like you are alone, you can always share your feelings here. We are all here for one another. There is a lot of research going on and access to treatments that have proven to work with chron's patients is being sought after...
I hope your appt with the GI goes well and she is open to the Stem Cell treatments PyschoJane mentioned.
