Yervoy & Colitis

My background: Ipi/Yervoy April 2015 [four does] leading to a positive response but my anterior pituitary stopped working so I am now dependent on prednisolone and levo-thyroxine.

I had continuous diarrhoea on Ipi/Yeroy. It even came back for 45 days (along with the rash) months after my last dose. However, it never developed into colitis so my experience may not be relevant to you.

I also had apallling wind. Wind and diarrhoea are an awful combination. I so sympathise with the 'no sleep' situation. I had explosive diarrhoea at 3 am every morning for a month! I used to take 'Windeze' to migtigate the wind but I cannot take it now that I am on levo-thyroxine.

I am on prednisolone but only low doses for cortisol replacement.

In the end I decided I had to do something other than take Imoduium, which only mitigated the situation. I tried colofac MR but it did not really help.

1. I started taking a probiotic. There had been two chances for all my gut flora to be destroyed (a) when I had antibiotics after my surgery (b) Prednisolone knocks off gut flora. I take one called 'BioKult' which i available in the UK and contains multiple strains. I keep taking it because of the predniolone.

2. I cut out insoluble fibre from my diet. I know this seems weird but my GP (general practitioner) suggested it and it worked!  He said that insoluble fibre irritated the gut wall in people with Irritable Bowel Syndrome so it was his suggestion when I was desperate.

So my modified daiy diet was:

1. Two tablets of probiotic each day with my main meal

2. Three 400 ml helpings of a fresh juice that is fibre-free as I can make it (I have a juicer), I dissolve about four teaspoons of soluble fibre (Benefiber) in each.

3. As little insoluble fibre as I can manage

As things have gone on I have added in some more stuff:

4. Two capsules of activated charcoal (but you have to be careful to take this away from other medication because it absorbs chemicals – I take it with the probiotic).

5. At the moment, I am trying a enzymatic digestive supplement called 'Beano'. It i designed to be taken when you eat something that normally causes you wind, like beans. As almost anything can cause me wind, I am trying it before most meals.

I was never fussy about my diet but desperation can drive you to try anything! 

My gut function is still not normal but I am coping just fine.

My background: Ipi/Yervoy April 2015 [four does] leading to a positive response but my anterior pituitary stopped working so I am now dependent on prednisolone and levo-thyroxine.

I had continuous diarrhoea on Ipi/Yeroy. It even came back for 45 days (along with the rash) months after my last dose. However, it never developed into colitis so my experience may not be relevant to you.

I also had apallling wind. Wind and diarrhoea are an awful combination. I so sympathise with the 'no sleep' situation. I had explosive diarrhoea at 3 am every morning for a month! I used to take 'Windeze' to migtigate the wind but I cannot take it now that I am on levo-thyroxine.

I am on prednisolone but only low doses for cortisol replacement.

In the end I decided I had to do something other than take Imoduium, which only mitigated the situation. I tried colofac MR but it did not really help.

1. I started taking a probiotic. There had been two chances for all my gut flora to be destroyed (a) when I had antibiotics after my surgery (b) Prednisolone knocks off gut flora. I take one called 'BioKult' which i available in the UK and contains multiple strains. I keep taking it because of the predniolone.

2. I cut out insoluble fibre from my diet. I know this seems weird but my GP (general practitioner) suggested it and it worked!  He said that insoluble fibre irritated the gut wall in people with Irritable Bowel Syndrome so it was his suggestion when I was desperate.

So my modified daiy diet was:

1. Two tablets of probiotic each day with my main meal

2. Three 400 ml helpings of a fresh juice that is fibre-free as I can make it (I have a juicer), I dissolve about four teaspoons of soluble fibre (Benefiber) in each.

3. As little insoluble fibre as I can manage

As things have gone on I have added in some more stuff:

4. Two capsules of activated charcoal (but you have to be careful to take this away from other medication because it absorbs chemicals – I take it with the probiotic).

5. At the moment, I am trying a enzymatic digestive supplement called 'Beano'. It i designed to be taken when you eat something that normally causes you wind, like beans. As almost anything can cause me wind, I am trying it before most meals.

I was never fussy about my diet but desperation can drive you to try anything! 

My gut function is still not normal but I am coping just fine.

My background: Ipi/Yervoy April 2015 [four does] leading to a positive response but my anterior pituitary stopped working so I am now dependent on prednisolone and levo-thyroxine.

I had continuous diarrhoea on Ipi/Yeroy. It even came back for 45 days (along with the rash) months after my last dose. However, it never developed into colitis so my experience may not be relevant to you.

I also had apallling wind. Wind and diarrhoea are an awful combination. I so sympathise with the 'no sleep' situation. I had explosive diarrhoea at 3 am every morning for a month! I used to take 'Windeze' to migtigate the wind but I cannot take it now that I am on levo-thyroxine.

I am on prednisolone but only low doses for cortisol replacement.

In the end I decided I had to do something other than take Imoduium, which only mitigated the situation. I tried colofac MR but it did not really help.

1. I started taking a probiotic. There had been two chances for all my gut flora to be destroyed (a) when I had antibiotics after my surgery (b) Prednisolone knocks off gut flora. I take one called 'BioKult' which i available in the UK and contains multiple strains. I keep taking it because of the predniolone.

2. I cut out insoluble fibre from my diet. I know this seems weird but my GP (general practitioner) suggested it and it worked!  He said that insoluble fibre irritated the gut wall in people with Irritable Bowel Syndrome so it was his suggestion when I was desperate.

So my modified daiy diet was:

1. Two tablets of probiotic each day with my main meal

2. Three 400 ml helpings of a fresh juice that is fibre-free as I can make it (I have a juicer), I dissolve about four teaspoons of soluble fibre (Benefiber) in each.

3. As little insoluble fibre as I can manage

As things have gone on I have added in some more stuff:

4. Two capsules of activated charcoal (but you have to be careful to take this away from other medication because it absorbs chemicals – I take it with the probiotic).

5. At the moment, I am trying a enzymatic digestive supplement called 'Beano'. It i designed to be taken when you eat something that normally causes you wind, like beans. As almost anything can cause me wind, I am trying it before most meals.

I was never fussy about my diet but desperation can drive you to try anything! 

My gut function is still not normal but I am coping just fine.

I've had ipi-related colitis requiring high dose prednisone (160mg) a few years ago.  I was on prednisone for about 10 weeks (you should add endocort by the way–a steroid that only acts in the gut–as a supplement by the way).  I don't really have any great tips other than to keep in mind that this time will pass.  Once I was off the steroids, all returned to "normal" and my GI tract was never better.  You'll get through it.  

I've had ipi-related colitis requiring high dose prednisone (160mg) a few years ago.  I was on prednisone for about 10 weeks (you should add endocort by the way–a steroid that only acts in the gut–as a supplement by the way).  I don't really have any great tips other than to keep in mind that this time will pass.  Once I was off the steroids, all returned to "normal" and my GI tract was never better.  You'll get through it.  

I've had ipi-related colitis requiring high dose prednisone (160mg) a few years ago.  I was on prednisone for about 10 weeks (you should add endocort by the way–a steroid that only acts in the gut–as a supplement by the way).  I don't really have any great tips other than to keep in mind that this time will pass.  Once I was off the steroids, all returned to "normal" and my GI tract was never better.  You'll get through it.  

My Mom was diagnosed with Stage IV with brain mets in November of 2013. In December she had gamma knife radiation for the brain tumors and then started Yervoy. By the end of January she had severe colitis. Her doctor took her off Yervoy (2 of 4 treatments given by then) and tried to treat the colitis with prednisone for a number of weeks, but it too a while. At the end of April she had her 3rd treatment of Yervoy even through we knew it was risky because of her colitis. Within a week it was back and she had to be put on prednisone again and was told that she could not get her 4th infusion.

What came out of all of this was that her doctor finally mentioned that she could be given an enema to treat the colitis, perhaps with better result because of where it was located in scan after scan. She was given the option to do this and ended up deciding to go for it within hours of seeing her doctors. Her colitis was gone within a week. And the enema was very easy to do by herself.

You might ask your doctor about this and see if probiotics could help too.

Good Luck!

PS

My Mom is doing great!

My Mom was diagnosed with Stage IV with brain mets in November of 2013. In December she had gamma knife radiation for the brain tumors and then started Yervoy. By the end of January she had severe colitis. Her doctor took her off Yervoy (2 of 4 treatments given by then) and tried to treat the colitis with prednisone for a number of weeks, but it too a while. At the end of April she had her 3rd treatment of Yervoy even through we knew it was risky because of her colitis. Within a week it was back and she had to be put on prednisone again and was told that she could not get her 4th infusion.

What came out of all of this was that her doctor finally mentioned that she could be given an enema to treat the colitis, perhaps with better result because of where it was located in scan after scan. She was given the option to do this and ended up deciding to go for it within hours of seeing her doctors. Her colitis was gone within a week. And the enema was very easy to do by herself.

You might ask your doctor about this and see if probiotics could help too.

Good Luck!

PS

My Mom is doing great!

My Mom was diagnosed with Stage IV with brain mets in November of 2013. In December she had gamma knife radiation for the brain tumors and then started Yervoy. By the end of January she had severe colitis. Her doctor took her off Yervoy (2 of 4 treatments given by then) and tried to treat the colitis with prednisone for a number of weeks, but it too a while. At the end of April she had her 3rd treatment of Yervoy even through we knew it was risky because of her colitis. Within a week it was back and she had to be put on prednisone again and was told that she could not get her 4th infusion.

What came out of all of this was that her doctor finally mentioned that she could be given an enema to treat the colitis, perhaps with better result because of where it was located in scan after scan. She was given the option to do this and ended up deciding to go for it within hours of seeing her doctors. Her colitis was gone within a week. And the enema was very easy to do by herself.

You might ask your doctor about this and see if probiotics could help too.

Good Luck!

PS

My Mom is doing great!

Hey Coach,

How many ipi infusions have you had and how many to go? 

I posted this in a different thread but kind of pertains. I to had a tough go with the stuff.

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

How is it currently?

Hey Coach,

How many ipi infusions have you had and how many to go? 

I posted this in a different thread but kind of pertains. I to had a tough go with the stuff.

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

How is it currently?

Hey Coach,

How many ipi infusions have you had and how many to go? 

I posted this in a different thread but kind of pertains. I to had a tough go with the stuff.

Long story short, I finished ipi/nivo March 9th. I was close to not being able to do the 4th treatment (mainly colitis) but talked the onc. into going for it. Paid a price. Landed in the hospital 2wice with severe dehydration and a few other things. Diarhea and vomiting mainly. Was on up to 120 mg prednisone for but now on Dexamethasone weaning down mainly for inflammation issues. My follow up Nivo treatments have been postponed now for a month due to getting the colitis under control and steroids down. Hopefully starting the Nivo next Tues. 26th.

Unfortunatley My tumors are the same size as before ipi/nivo treatment. Hoping that the rewards are just a delay and or the Nivo going forward will do the trick. I have a pet scan this Wednesday the 20th to get a broader pic of anything new and status of existing.

How is it currently?