I was diagnosed with Crohn's disease in 2011. I was a sophomore in college. I am now 22 years old and have had cdiff 4 times in the last 16 months. If I'm not battling the cdiff I am battling my Crohn's disease. I was forced to take a medical withdrawal from college when my disease was not under control. In my last cdiff episode I was hospitalized 3 times and was very close to having a fecal transplant. Has anyone had this before? The reason I have joined this website though is because I would love to find other people who are battling both cdiff and Crohn's. Yesterday I went for my 7th Remicade treatment. At about an hour in I started sweating, then wheezing. The next thing I knew I stopped breathing, my throat shut, my entire body turned blood red and my blood pressure a plummeted. The nurse yelled "code blue and were losing her" I have never had such a traumatic and deathly experience before in my entire life. I thought I was going to die. Luckily they found someone who could help me and the ambulance arrived and I'm okay. Sometimes I feel there is just no hope for me because I can never catch a break. If I'm not battling my worst episode of cdiff im about to die from my Crohn's treatment. Has anyone had a reaction like this after 7 infusions?
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Will I ever live a normal life?
- Thread starter Robertsba92
- Start date
DS had a reaction to remicade after 8 infusions
He is now on humira and has been for almost two years.
Hope things improve soon
He is now on humira and has been for almost two years.
Hope things improve soon
Robertsba92,
My Sister had difficult c-diff, she responded well to vancomycin and a VSL#3 proboitic.
" In general, probiotics are thought to work against C. difficile by competing for the space it occupies in the GI tract."
Remicade..now there is a ?? ....concurrent use of immunomodulators make managing C-diff challenging, as they can sometimes lead to a C-diff diagnosis...In the forum "Treatment" on this site under "Remicade overview" it does say " There have been rare reports of side effects during infusions, including chest pain, shortness of breath, and nausea."
I would have another discussion with your Gastroenterologist and perhaps a consult with the infection disease department of your hospital.
As far as life being normal, take a deep breath....do..it again... I believe if you take control of your treatment, (and remember those Dr work for you, as your ins pays their wage), it will empower you to a new normal....I agree with DJBHEAT....STAY POSITIVE....well wishes to you
My Sister had difficult c-diff, she responded well to vancomycin and a VSL#3 proboitic.
" In general, probiotics are thought to work against C. difficile by competing for the space it occupies in the GI tract."
Remicade..now there is a ?? ....concurrent use of immunomodulators make managing C-diff challenging, as they can sometimes lead to a C-diff diagnosis...In the forum "Treatment" on this site under "Remicade overview" it does say " There have been rare reports of side effects during infusions, including chest pain, shortness of breath, and nausea."
I would have another discussion with your Gastroenterologist and perhaps a consult with the infection disease department of your hospital.
As far as life being normal, take a deep breath....do..it again... I believe if you take control of your treatment, (and remember those Dr work for you, as your ins pays their wage), it will empower you to a new normal....I agree with DJBHEAT....STAY POSITIVE....well wishes to you
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- Location
- London, UK
I'm so sorry that you went through that experience. I haven't had that reaction myself but it was something I worried about when I started Remicade because it is a risk (what with the mouse in it and all lol). I can only imagine how terrifying that was for you and I'm so glad you are okay, although completely understandably shaken.
It isn't that uncommon to have that experience with Remicade so there should be some other people around here who can relate on that and tell you where they went next with treatment. I think if the Remicade was otherwise working for you then your doc will probably move you to adalimumab which I switched to just because we thought it might work better for me than Remicade and though it hasn't really made a difference my doctors thought I should stay on it because being fully humanized it doesn't have the same risk of the sort of severe reaction that you went though.
Regarding C diff I haven't had that either although I've been interested in reading about the fecal transplant because I have a lot of issues with out of balance gut flora and I have read a lot of positive things about it in regards to treating c diff so hopefully that will allow you to finally get rid of that. I think that would be pretty major in terms of getting you back to health.
I can definitely relate to the struggle and feeling like it is always one thing or the other and that it will never end. You vanquish one symptom and then another pops up and it is understandable to feel defeated at times. I wish I could say that I know you will soon lead a normal life. I wish I knew that for myself too. But even when we have doubts that we can get to normal, I think we have to strive for it. We just have to keep going and try that next treatment. Fingers crossed for you that a fecal transplant and a new biologic will be enough to get you feeling normal again.
It isn't that uncommon to have that experience with Remicade so there should be some other people around here who can relate on that and tell you where they went next with treatment. I think if the Remicade was otherwise working for you then your doc will probably move you to adalimumab which I switched to just because we thought it might work better for me than Remicade and though it hasn't really made a difference my doctors thought I should stay on it because being fully humanized it doesn't have the same risk of the sort of severe reaction that you went though.
Regarding C diff I haven't had that either although I've been interested in reading about the fecal transplant because I have a lot of issues with out of balance gut flora and I have read a lot of positive things about it in regards to treating c diff so hopefully that will allow you to finally get rid of that. I think that would be pretty major in terms of getting you back to health.
I can definitely relate to the struggle and feeling like it is always one thing or the other and that it will never end. You vanquish one symptom and then another pops up and it is understandable to feel defeated at times. I wish I could say that I know you will soon lead a normal life. I wish I knew that for myself too. But even when we have doubts that we can get to normal, I think we have to strive for it. We just have to keep going and try that next treatment. Fingers crossed for you that a fecal transplant and a new biologic will be enough to get you feeling normal again.
- Location
- Montréal, Canada
is the fecal transplant still possible?