Remission length

[Am1025]

Just curious, how long have you been in remission and what worked to get you there? Also do you consider it remission when your symptoms are gone or only if you have clean scopes?

 

[Scipio]

I have been in symptomatic remission ever since I started on Stelara 4 years ago. My scopes look good (no ulcers) but the biopsies do show a low level of lingering inflammation in the terminal ileum. My GI has chosen to not do anything about the residual inflammation other than to keep up with the Stelara and keep an eye on the inflammation to see if it gets any worse.

 

[Am1025]

I have been in symptomatic remission ever since I started on Stelara 4 years ago. My scopes look good (no ulcers) but the biopsies do show a low level of lingering inflammation in the terminal ileum. My GI has chosen to not do anything about the residual inflammation other than to keep up with the Stelara and keep an eye on the inflammation to see if it gets any worse.

Oh ok. What's your typical symptoms? My husband has had non symptomatic active disease so I feel a little confused

 

[westernbuddy]

I had 5 bad years before emergency surgery and diagnosis.

Then 8 years of some sort of remission with no meds, not a perfect quality of life highly controlled with diet.

Then a huge flair, then had a really good ten years of deep remission with diet and 50/50 entral nutrition.

Now on stelara.


So in 23ish years of crohns my #1 best and most normal years came from a simple drink daily and no meds.


Clean scopes are not easy to achieve with crohns, often the odd ulcer is there as a minimum.

 

[Scipio]

Oh ok. What's your typical symptoms? My husband has had non symptomatic active disease so I feel a little confused

"Remission" can be defined several ways. When I say "symptomatic remission" I mean that I have no symptoms - as opposed to endscopic remission (clean scopes) or histologic remission (biopsies show no sign of disease). A truly cured person would have all three forms of remission. In my case I have the first two but not the third.

 

[Am1025]

I had 5 bad years before emergency surgery and diagnosis.

Then 8 years of some sort of remission with no meds, not a perfect quality of life highly controlled with diet.

Then a huge flair, then had a really good ten years of deep remission with diet and 50/50 entral nutrition.

Now on stelara.


So in 23ish years of crohns my #1 best and most normal years came from a simple drink daily and no meds.


Clean scopes are not easy to achieve with crohns, often the odd ulcer is there as a minimum.

What's Entral Nutrion?

 

[Am1025]

Remission can be defined several ways. When I say "symptomaic remission" I mean that I have no symptoms - as opposed to endscopic remission (clean scopes) or histologic remission (biopsies show no sign of disease). A truly cured person would have all three forms of remission. In my case I have the first two but not the third.

Oh ok I understand! My husband has "Clinical remission" as his doc calls it. So great labs and zero symptoms but ulcers found and a couple strictures on his scope so switching meds we go as well as some diet changes. I would like my hubs to go full Paleo or SCD but he isn't there yet he says

 

[Scipio]

Oh ok I understand! My husband has "Clinical remission" as his doc calls it. So great labs and zero symptoms but ulcers found and a couple strictures on his scope so switching meds we go as well as some diet changes. I would like my hubs to go full Paleo or SCD but he isn't there yet he says

"Clinical remission" is often used interchangeably with Symptomatic remission - both meaning no symptoms.

I hope your husband can find an approach that gets rid of those ulcers as well. Diet has never really helped me much. I've never been able to identify any particular food or combination of foods that makes my disease any better or any worse. Hopefully, it helps your husband.

 

[westernbuddy]

Sure nursing strictures and ulcers sounds normal in crohns world, the idea these days is to make them not progress further and even repair some damage with the latest biologic medicine.

Entral nutrition, there are many threads on here about it, you can either do partial or full.

And me personally I'm never a fan of specific diets or people selling them at this stage of knowledge of crohns and diet, as people are different.

The last crohns person I sat next to in real life our trigger foods were so different you would think we had different diseases.

You can feel when a food isn't right, so a mixture of the best food and meds or liquid food entral nutrition is best.

Also the way food is cooked can effect crohns.

I like a book buy tracie d'alessandro although even that some people won't be able to eat certain things in it.

 

[Am1025]

"Clinical remission" is often used interchangeably with Symptomatic remission - both meaning no symptoms.

I hope your husband can find an approach that gets rid of those ulcers as well. Diet has never really helped me much. I've never been able to identify any particular food or combination of foods that makes my disease any better or any worse. Hopefully, it helps your husband.

Thanks so much!!

 

[Am1025]

Sure nursing strictures and ulcers sounds normal in crohns world, the idea these days is to make them not progress further and even repair some damage with the latest biologic medicine.

Entral nutrition, there are many threads on here about it, you can either do partial or full.

And me personally I'm never a fan of specific diets or people selling them at this stage of knowledge of crohns and diet, as people are different.

The last crohns person I sat next to in real life our trigger foods were so different you would think we had different diseases.

You can feel when a food isn't right, so a mixture of the best food and meds or liquid food entral nutrition is best.

Also the way food is cooked can effect crohns.

I like a book buy tracie d'alessandro although even that some people won't be able to eat certain things in it.

I'll check that out! I appreciate your feedback

 

[awoenker12]

My longest period of clinical remission with no symptoms was about 5.5 years with just a standard dose of pentasa. My bloodwork showed that I had some signs of inflammation during that time, but I had absolutely no symptoms. Then I had a big flare up and ended up going through prednisone, which helped, 6mp, which did nothing for me, and then to Remicade. Remicade did wonders for me and was on Remicade for 3 years before my insurance forced me to switch to Inflectra. Prior to my final infusion of Remicade before my switch to Inflectra, I was in a pretty deep remission, with almost no signs of active inflammation. But once I made the switch to Inflectra, things flared up again. They recently doubled my dosage of Inflectra, which seems to have helped a bit. I still think Remicade worked better for me.

 

[Am1025]

Ugh

My longest period of clinical remission with no symptoms was about 5.5 years with just a standard dose of pentasa. My bloodwork showed that I had some signs of inflammation during that time, but I had absolutely no symptoms. Then I had a big flare up and ended up going through prednisone, which helped, 6mp, which did nothing for me, and then to Remicade. Remicade did wonders for me and was on Remicade for 3 years before my insurance forced me to switch to Inflectra. Prior to my final infusion of Remicade before my switch to Inflectra, I was in a pretty deep remission, with almost no signs of active inflammation. But once I made the switch to Inflectra, things flared up again. They recently doubled my dosage of Inflectra, which seems to have helped a bit. I still think Remicade worked better for me.

Ugh I'm so sorry! That's so frustrating. Its so annoying that insurance can have such control over the medicine your doc chooses for you

 

[awoenker12]

Ugh I'm so sorry! That's so frustrating. Its so annoying that insurance can have such control over the medicine your doc chooses for you

I wish it wasn't that way. The insurance is only looking for every possible way to save a buck.

 

[Am1025]

I wish it wasn't that way. The insurance is only looking for every possible way to save a buck.

Yes so true!