Hi Everyone,
This is my first post after I introduced myself a few months ago.
I was diagnosed in December 2016 and completed my stem cell transplant in May 2017. Around November 2017 I started to develop moderate to severe gastrointestinal issues. I have had severe, and I mean severe, bouts with diarrhea, not being able to hold, stomach constantly growling, gas, just to name a few.
I have a great GI doctor and he has done a second colonoscopy, endoscopy, biopsies, and stool samples, and all tests come back negative or no problems. I have went off of medications (even Revlimid for a month), and nothing seems to change.
I did once think that I found the problem when I forgot to re-fill my Protonix (pantoprazole). For a few weeks I went "normal," but it eventually came back, and I still don't take it now. Funny, for the last 3 days everything was normal again, but today I am back to the same. Normal for me does not come often, but when it does, what a relief!
I have watched my diet and cannot narrow it down to any food. It could be a diet problem, but I am not able to figure out.
I will see my oncologist next week and press him about it. But this problem is to the point it interferes with my life and my job. I never know when I will have to go or if I will have enough time to get to the toilet. As far as my multiple myeloma goes, I feel great. If I didn't have the GI issues I would be just a regular guy. (LOL)
Thanks for listening and any ideas would greatly be appreciated.
Randy
Forums
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reach449 - Name: Randy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: December 2017
- Age at diagnosis: 57
Re: GI problems after stem cell transplant - what to do?
You don't mention if you are currently on Revlimid which can cause difficult diarrhea issues. Some have gotten relief from bile acid sequestrants such as Cholestipol and Welchol.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: GI problems after stem cell transplant - what to do?
goldmine848,
Thanks for taking the time to reply. I did mention in my post about Revlimid in my second paragraph; my oncologist took me off of it for one month and no changes.
Like I stated, I have tried "everything" I can think of with no long standing results.
Thanks for taking the time to reply. I did mention in my post about Revlimid in my second paragraph; my oncologist took me off of it for one month and no changes.
Like I stated, I have tried "everything" I can think of with no long standing results.
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reach449 - Name: Randy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: December 2017
- Age at diagnosis: 57
Re: GI problems after stem cell transplant - what to do?
I have a suspicion that Revlimid made me lactose intolerant. At least after I adjusted my diet accordingly, the GI problems cleared up.
Charlie
Charlie
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: GI problems after stem cell transplant - what to do?
My mother had her stem cell transplant 3 months ago. She is having exactly the same problem. Till now it goes for some days and return, the doctor still can't help. The only thing is medicine for diarrhea.
I hope we could solve this soon.
I hope we could solve this soon.
Re: GI problems after stem cell transplant - what to do?
Hi Randy,
Andrew's point is still a good one. What drugs are you currently on? (Also note, Andrew has a nice article on diarrhea in the patient columns; thanks for writing that, Andrew.)
I was on Revlimid a long time and also dealt with diarrhea. For quite some time, I was blaming the Revlimid for the diarrhea. Eventually, I discontinued the Revlimid and still had to deal with that issue. As it turns out, I was also on Bactrim (sulfamethoxazole and trimethoprim) at the time. I discontinued the Bactrim for a while and eventually resolved the issue. It did take some time (well over a month) before things settled down.
Sometimes cause and effect are hard to determine. Both drugs could have been contributing to the issue. I expect the Bactrim was more an issue than the Revlimid. But a tough situation to prove. However, during a meeting with an attending physician the questions asked, tend to implicate the Revlimid rather than some of the other drugs. A bit of a misleading environment if one is not cognizant of the the drug side effects.
Take care
Andrew's point is still a good one. What drugs are you currently on? (Also note, Andrew has a nice article on diarrhea in the patient columns; thanks for writing that, Andrew.)
I was on Revlimid a long time and also dealt with diarrhea. For quite some time, I was blaming the Revlimid for the diarrhea. Eventually, I discontinued the Revlimid and still had to deal with that issue. As it turns out, I was also on Bactrim (sulfamethoxazole and trimethoprim) at the time. I discontinued the Bactrim for a while and eventually resolved the issue. It did take some time (well over a month) before things settled down.
Sometimes cause and effect are hard to determine. Both drugs could have been contributing to the issue. I expect the Bactrim was more an issue than the Revlimid. But a tough situation to prove. However, during a meeting with an attending physician the questions asked, tend to implicate the Revlimid rather than some of the other drugs. A bit of a misleading environment if one is not cognizant of the the drug side effects.
Take care
Re: GI problems after stem cell transplant - what to do?
It's my understanding that modifying your fibre intake can sometimes help with chronic diarrhea in myeloma patients.
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wenlock00 - Name: Wenlock00
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 58
Re: GI problems after stem cell transplant - what to do?
Thanks everyone for all of your inputs.
Yes, maybe Revlimid is the problem. I did go off of Revlimid early this year for a month to rule the drug out of the equation, but the problem still persisted.
I had to take four days of sick leave last week because the problem got worse that it ever had. I sometime had to go to the bathroom every thirty minutes not knowing what would happen when I sat on the toilet. I also got dizzy / light headed many times and almost passed out. Ironically, now I feel absolutely normal. That is the crazy thing about this issue. I feel terrible a few days or a week, then everything feels great. I just don't know when the issue will raise its ugly head again. But I feel it won't take too long. As I said, my GI doctor has not been able to find anything.
I saw my oncologist this last Thursday and he feels terrible that I am suffering like this. He has decided to cut my Revlimid from 10 mg to 5 mg. He really believes that Revlimid is the problem. On a good note, fourteen months after my transplant, my blood work is completely normal, as with a person who doesn't have this cancer! It made me so happy. That is why he feels bad; that I am having these GI issues, but my prognosis on my multiple myeloma is "above average"
Anyway, I will be cutting my Revlimid in half either this month or the next and I will see what happens. Thanks to everyone, especially to other people who are dealing with this issue. I will keep everyone posted on the progress.
Yes, maybe Revlimid is the problem. I did go off of Revlimid early this year for a month to rule the drug out of the equation, but the problem still persisted.
I had to take four days of sick leave last week because the problem got worse that it ever had. I sometime had to go to the bathroom every thirty minutes not knowing what would happen when I sat on the toilet. I also got dizzy / light headed many times and almost passed out. Ironically, now I feel absolutely normal. That is the crazy thing about this issue. I feel terrible a few days or a week, then everything feels great. I just don't know when the issue will raise its ugly head again. But I feel it won't take too long. As I said, my GI doctor has not been able to find anything.
I saw my oncologist this last Thursday and he feels terrible that I am suffering like this. He has decided to cut my Revlimid from 10 mg to 5 mg. He really believes that Revlimid is the problem. On a good note, fourteen months after my transplant, my blood work is completely normal, as with a person who doesn't have this cancer! It made me so happy. That is why he feels bad; that I am having these GI issues, but my prognosis on my multiple myeloma is "above average"
Anyway, I will be cutting my Revlimid in half either this month or the next and I will see what happens. Thanks to everyone, especially to other people who are dealing with this issue. I will keep everyone posted on the progress.
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reach449 - Name: Randy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: December 2017
- Age at diagnosis: 57
Re: GI problems after stem cell transplant - what to do?
I, too have had many GI issues with the myeloma medications and even before being diagnosed with multiple myeloma when I was only smoldering. I am wondering if your GI doc has considered SIBO (small intestinal bacterial overgrowth), which can be managed with diet? I have to say I was tested for that at one time and didn't have it, but you may.
Velcade, as induction therapy, made me totally constipated and I tried EVERYTHING to resolve it, and nothing worked until they lowered the dose.
Revlimid, as maintenance therapy, took me the other way! Initially I used the cholestyramine (Questran), but after a short time I found that adding a probiotic, at 33 million, did the trick for me.
Good luck!
Velcade, as induction therapy, made me totally constipated and I tried EVERYTHING to resolve it, and nothing worked until they lowered the dose.
Revlimid, as maintenance therapy, took me the other way! Initially I used the cholestyramine (Questran), but after a short time I found that adding a probiotic, at 33 million, did the trick for me.
Good luck!
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MJH - Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 67
Re: GI problems after stem cell transplant - what to do?
Hi Randy,
This seems to be a common problem after stem cell transplants and myeloma treatment. I have had similar issues for the last 3 years since my stem cell transplant, and have discussed the issue with a number of other myeloma patients, most of whom have the same issues. A theory they have shared is that the high-dose melphalan administered before the stem cell transplant strips some lining off the bowel, causing ongoing problems. However, I'm not a doctor, and maybe this is just a guess.
Like you, I still find it difficult to deal with this issue, but I think we just have to learn to live with it.
Good Luck.
This seems to be a common problem after stem cell transplants and myeloma treatment. I have had similar issues for the last 3 years since my stem cell transplant, and have discussed the issue with a number of other myeloma patients, most of whom have the same issues. A theory they have shared is that the high-dose melphalan administered before the stem cell transplant strips some lining off the bowel, causing ongoing problems. However, I'm not a doctor, and maybe this is just a guess.
Like you, I still find it difficult to deal with this issue, but I think we just have to learn to live with it.
Good Luck.
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Wainui - Name: Wainui
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 56
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