Help for my hubs

[Am1025]

Hello All,

Long time lurker here my husband has had Crohns disease for 6 years and initially was treated with entocort and then mercaptopurine was started almost 5 years ago. He's done great! Labs are perfect, not a single symptom. Weight gain, high energy etc. Nothing like he was before diagnosis a d even with entocort alone. He had a routine colonoscopy yesterday and we were disheartened to find out he has 3 strictures (2 were inflated with a balloon and 1 couldn't be because it had an ulcer on it) and ulcers were seen. Initially when his doc started all looked great and he thought he wouldn't fund anything until he got to a certain point. He even had to switch to a pediatric scope to finish. So his doc is recommending Humira and a follow up CT entography in a few months. He doesn't think he needs steriods right now and says the strictures aren't fibrotic and seems confident the Humira will work. He said the good news was he didn't see "as many ulcers" as last scope (5years ago) but I'm terrified these strictures will cause a problem before thr Humira has time to work. We are waiting on insurance and blood work before he can start and I know Humira takes a long time to work. I spoke with his GI nurse today and she reassured me they aren't worried and if they were he would be on Entocort or Pred. Said to continue on as we have been, not any diet changes are needed now either and just report back if any symptoms develop. So I'm really looking for some reassuring stories from others and some insight? He also is recommending him stay on the mercaptopurine for 2 years witg the Humira then he will wean him off the mercaptopurine but we don't love that idea due to the cancer risk, I do really love his doc and trust him but I'm scared. Once again insight is appreciated! His aunt also has crohns and had a major bowel resection about 18 years ago (went undiagnosed for years) and has been on humira ever since with amazing results. Says she forgets she's even on anything. And his mom has RA and has tested positive for Crohns but she's on about 7 different meds to stay in remission. That scares me.. But I'm a nervous wreck over here especially since he's felt so great. I feel like it's a kick to the gut (no pun intended ) and I'm scared that something will happen suddenly. Sorry to ramble. Any insight and encouraging stories are appreciated! Also any success with Humira would be great to hear too!

 

[Scipio]

In my experience strictures tend to get worse only very slowly unless the disease is really bad - lots of big, bleeding ulcers. I had a stricture detected in my terminal ileum 10 years ago when I was first diagnosed. They debated whether to operate but decided it wasn't quite big enough to require surgery. I was treated at first with occasional short courses of Entocort and for the last four years with Stelara. And 10 years down the road the stricture is still there and still not quite big enough to really worry about.

IMO getting on the Humira to fix those ulcers is a very good idea. But don't sweat the stricture until you have a real reason to. Just keep focused on getting his inflammation under control, ulcers healed, and into a solid remission.

 

[Am1025]

In my experience strictures tend to get worse only very slowly unless the disease is really bad - lots of big, bleeding ulcers. I had a stricture detected in my terminal ileum 10 years ago when I was first diagnosed. They debated whether to operate but decided it wasn't quite big enough to require surgery. I was treated at first with occasional short courses of Entocort and for the last four years with Stelara. And 10 years down the road the stricture is still there and still not quite big enough to really worry about.

IMO getting on the Humira to fix those ulcers is a very good idea. But don't sweat the stricture until you have a real reason to. Just keep focused on getting his inflammation under control, ulcers healed, and into a solid remission.

Thank you so much for telling me your experience! I really appreciate it. They did tell me if they were concerned he'd be on entocort or pred. But since it wasn't fibrotic and was able to expand they aren't worried. The one that scares me is the one with the ulcer that they didn't inflate. None of his ulcers were bleeding and honestly he's never had bleeding ulcers. Thankfully. Any more input is greatly appreciated!

 

[Kannassee]

Thank you so much for telling me your experience! I really appreciate it. They did tell me if they were concerned he'd be on entocort or pred. But since it wasn't fibrotic and was able to expand they aren't worried. The one that scares me is the one with the ulcer that they didn't inflate. None of his ulcers were bleeding and honestly he's never had bleeding ulcers. Thankfully. Any more input is greatly appreciated!

Well at least he was able to pass thru with the pedristic scope. I had one that was fibrostenotic that was 3 mm wide at the site of a anastomosis, that one gave me problems with pain and blockages a couple of years but my GI did a balloon dilation on it twice with a month interval and that was it. He opened it to 16 mm that is almost the normal diameter. The procedure takes about 20 min and is done during endoscopy. If it reocurrs they can do it again. If the strictures are very large I think more than 4 cm then thus does not work so well. There is another procedure callef neefle knife that is done during endoscopy but I think they do it only in the Cleveland clinic in Ohio

 

[Am1025]

Well at least he was able to pass thru with the pedristic scope. I had one that was fibrostenotic that was 3 mm wide at the site of a anastomosis, that one gave me problems with pain and blockages a couple of years but my GI did a balloon dilation on it twice with a month interval and that was it. He opened it to 16 mm that is almost the normal diameter. The procedure takes about 20 min and is done during endoscopy. If it reocurrs they can do it again. If the strictures are very large I think more than 4 cm then thus does not work so well. There is another procedure callef neefle knife that is done during endoscopy but I think they do it only in the Cleveland clinic in Ohio

Thanks! What's your thoughts on the one they couldn't dilate due to the ulcer that was on it?

 

[Kannassee]

I had the same problem my stricture was ulcerated when they discovered it, it was in the ileum and they put me on Remicade for about 3 or 4 months and when it was better they proceeded with the first ballon dilation and then a month later with the second one. After that one I can eat fiber again, no problems so far although to tell you the truth i am still a little aprehensive!!!!…lol

 

[Am1025]

Haha! Well thank you for your feedback!! I really REALLY appreciate it. His doc told him no dietary restrictions except be careful with raw veggies. Idk how I feel about that but trying to trust. My hubs did cut out gluten (bloating) and red meat as well as dairy except aged cheeses. If you think of anything else please feel free to share! This disease makes me feel so alone at times and I'm not even the one sick, my hubs isn't concerned in the least (of course )

 

[Am1025]

I had the same problem my stricture was ulcerated when they discovered it, it was in the ileum and they put me on Remicade for about 3 or 4 months and when it was better they proceeded with the first ballon dilation and then a month later with the second one. After that one I can eat fiber again, no problems so far although to tell you the truth i am still a little aprehensive!!!!…lol

Just realized my reply back to you didn't show up that it was back to you its below this. Sorry!

 

[Am1025]

I had the same problem my stricture was ulcerated when they discovered it, it was in the ileum and they put me on Remicade for about 3 or 4 months and when it was better they proceeded with the first ballon dilation and then a month later with the second one. After that one I can eat fiber again, no problems so far although to tell you the truth i am still a little aprehensive!!!!…lol

Haha! Well thank you for your feedback!! I really REALLY appreciate it. His doc told him no dietary restrictions except be careful with raw veggies. Idk how I feel about that but trying to trust. My hubs did cut out gluten (bloating) and red meat as well as dairy except aged cheeses. If you think of anything else please feel free to share! This disease makes me feel so alone at times and I'm not even the one sick, my hubs isn't concerned in the least (of course