Pain from Stricture?

[Novax]

I started Entyvio about 6-8 months back and after a few months started to feel better. In July my GI did colonoscopy and it looked great. About 90% improved from when Stelara was not stopping inflammation. Only problem is one short stricture in the ileum near the terminal ileum. The scarring is pretty bad he said and the passageway there is now very narrow. As I said, Entyvio seemed to make me feel almost perfect, with very little bad days. Recently I have had several days of bad gas, bloating and pain in the stomach along with more frequent bowel movements, although not diarrhea. I am curious if this could be all from the stricture? Are these the type of symptoms one experiences from a stricture? I always read about what happens when it becomes blocked and you can’t go to the bathroom but not as familiar with what other symptoms a stricture might cause if not blockage. I guess my fear is that so soon after great colonoscopy I have inflammation back again. I was feeling so good once it started kicking in and for the last few days feel like I did before it started to work. I sure hope it isn’t a flare because I almost forgot what it was like to feel “normal” when it started to work. My doc has already recommended getting that stricture removed so I am contemplating that anyway and if this is what is causing my symptoms - and not new inflammation - then I’m ready to get it cut out and see if that combined with Entyvio can improve my quality of life. Every time you think you are making progress in this diseases it seems to throw you another curveball. Thank you!

 

[Crohn2357]

I started Entyvio about 6-8 months back and after a few months started to feel better. In July my GI did colonoscopy and it looked great. About 90% improved from when Stelara was not stopping inflammation. Only problem is one short stricture in the ileum near the terminal ileum. The scarring is pretty bad he said and the passageway there is now very narrow. As I said, Entyvio seemed to make me feel almost perfect, with very little bad days. Recently I have had several days of bad gas, bloating and pain in the stomach along with more frequent bowel movements, although not diarrhea. I am curious if this could be all from the stricture? Are these the type of symptoms one experiences from a stricture? I always read about what happens when it becomes blocked and you can’t go to the bathroom but not as familiar with what other symptoms a stricture might cause if not blockage. I guess my fear is that so soon after great colonoscopy I have inflammation back again. I was feeling so good once it started kicking in and for the last few days feel like I did before it started to work. I sure hope it isn’t a flare because I almost forgot what it was like to feel “normal” when it started to work. My doc has already recommended getting that stricture removed so I am contemplating that anyway and if this is what is causing my symptoms - and not new inflammation - then I’m ready to get it cut out and see if that combined with Entyvio can improve my quality of life. Every time you think you are making progress in this diseases it seems to throw you another curveball. Thank you!

Hi, how have you been? I have a similar issue with a stricture and I’m wondering how things went for you. I hope you’re well.

 

[Jo-mom]

@Novax - it sounds similar to when my son's drug levels were dropping and he needed to increase his medication. It could be you need readjustment of your Entyvio. My son also has a stricture with scarring but the Remicade has been keeping things under control. However, there have been a few times in the past 6 years where he needed to increase the dosage or shorten the intervals. Once that happen, the symptoms that you are describing, disappeared.

 

[Crohn2357]

@Novax - it sounds similar to when my son's drug levels were dropping and he needed to increase his medication. It could be you need readjustment of your Entyvio. My son also has a stricture with scarring but the Remicade has been keeping things under control. However, there have been a few times in the past 6 years where he needed to increase the dosage or shorten the intervals. Once that happen, the symptoms that you are describing, disappeared.

Has your son ever tried entyvio? It’s very good that remicade works for him. I hope it continues. Strictures can be or become really problematic, better to be watchful even when he is in remission.

 

[Jo-mom]

No, my son has only been on Remicade and now also with small dose MTX. He also has AS so Remicade would be the best option. He has had stricture since his first diagnosis in 2018 and has been doing well with Remicade.

 

[Crohn2357]

No, my son has only been on Remicade and now also with small dose MTX. He also has AS so Remicade would be the best option. He has had stricture since his first diagnosis in 2018 and has been doing well with Remicade.

That’s great. I think combination therapy is the best. I have read several accounts of people with AS experiencing significant betterment and remission by simply cutting out gluten and some other immunogenic foods. Something to keep in mind.

 

[Novax]

Since then I had the surgery during Covid and stature in Entyvio. Been feeling great since then and just did colonoscopy and all looks great still with Entyvio. Feeling much better and for the most part symptoms so much better. I didn’t have a stricture that was too long so not having issues with absorption etc. worked great for me!

 

[Crohn2357]

Since then I had the surgery during Covid and stature in Entyvio. Been feeling great since then and just did colonoscopy and all looks great still with Entyvio. Feeling much better and for the most part symptoms so much better. I didn’t have a stricture that was too long so not having issues with absorption etc. worked great for me!

So, you had surgery to remove the stricture, and ever since then you haven’t experienced any other strictures or problems? If so, that’s great. I hope your success with entyvio continues.