Boyfriend having a Crohn’s flare.

[Kari85]

Hi,
I haven’t posted in a while. My anxiety has been, for the most part, manageable. I’m hoping some of you might give me a little insight to living with Crohn’s. My boyfriend was diagnosed in 2019. The only symptom he had was blood in stool. Needless to say he was a bad patient and didn’t take the medication they prescribed (Sulfasalazine). Fast forward to 3 months ago. He started having a flare. Ignored it. Developed an abscess. Developed a fistula. Was admitted to the hospital yesterday. His hemoglobin was low so the gave him some blood as well as a couple bags of antibiotics. They did a CT scan which showed basically his entire colon being inflamed. GI Dr. says his Crohn’s is no longer mild but still “manageable.” He had a scope done today. We won’t have the results until tomorrow. They gave him a bag of steroids and are starting him on Remicade.
My anxiety is through the roof. Will he be okay? Will he be able to live a “normal” life? I read that 3/4 of people with Crohn’s need to have surgery at some point. Is his life just going to be hospital visits? Does Remicade have horrible side effects? It’s sounds like a pretty serious treatment.
I found a Crohn’s forum but it was extremely triggering for me. Any insights would be appreciated.

 

[bin_tenn]

My fiancee was diagnosed with Crohn's 15 years ago, and she's fine. It did take a while to get things under control and find a medication that worked well, but otherwise it's not been a huge deal. The med that works best is Entyvio, which she gets via infusions every 6-8 weeks at a clinic. She was on Cimzia at one point and would still have painful flare ups, and I think she tried one other med previously.

She doesn't experience flare ups often anymore, and the ones she does get are very mild and tolerable. She no longer deals with excruciating pain and hospital visits because of it. Her GI doc has never felt, so far, that surgery will be necessary in the foreseeable future.

Yes, he can live a normal life. One of the most important things is that he do his part. He has to help himself or he won't feel well. He should watch what he eats, stay on top of appointments, take medications as needed, etc.

 

[Kari85]

My fiancee was diagnosed with Crohn's 15 years ago, and she's fine. It did take a while to get things under control and find a medication that worked well, but otherwise it's not been a huge deal. The med that works best is Entyvio, which she gets via infusions every 6-8 weeks at a clinic. She was on Cimzia at one point and would still have painful flare ups, and I think she tried one other med previously.

She doesn't experience flare ups often anymore, and the ones she does get are very mild and tolerable. She no longer deals with excruciating pain and hospital visits because of it. Her GI doc has never felt, so far, that surgery will be necessary in the foreseeable future.

Yes, he can live a normal life. One of the most important things is that he do his part. He has to help himself or he won't feel well. He should watch what he eats, stay on top of appointments, take medications as needed, etc.

Thank you! My boyfriend had his first dose of Remicade this morning and will be in the hospital a couple more days. Hoping he reacts well to it.

 

[bin_tenn]

Thank you! My boyfriend had his first dose of Remicade this morning and will be in the hospital a couple more days. Hoping he reacts well to it.

I hope he's well soon. I don't know what it's like personally, but I can still sympathize, being close to someone who deals with it.

 

[Kari85]

I hope he's well soon. I don't know what it's like personally, but I can still sympathize, being close to someone who deals with it.

He was released yesterday and is doing well. Waiting for insurance to approve Remicade so he can get that going.

 

[Kari85]

It took insurance 5 weeks to approve the infusion (he’ll be getting a generic kind of Remicade). Hopefully it’s as effective. I’ve read some not so great things about the generic ones. Anyway, he regressed so much that he’s back in the hospital. He had a 103 temp. I’m trying to manage my anxiety but I just keep thinking, “what if they can’t find a treatment that works?” It’s so hard to see him so miserable.

 

[He Man]

It took insurance 5 weeks to approve the infusion (he’ll be getting a generic kind of Remicade). Hopefully it’s as effective. I’ve read some not so great things about the generic ones. Anyway, he regressed so much that he’s back in the hospital. He had a 103 temp. I’m trying to manage my anxiety but I just keep thinking, “what if they can’t find a treatment that works?” It’s so hard to see him so miserable.

Hi..
If you can, help him with his diet. The medical community downplays how important diets are with this disease. They basically just want to write non-stop prescriptions. Different diets work for different patients.. and there are a lot of online groups & testimonials that help in understanding disease management.

I believe there is a problematic philosophy with this disease.. where some people take non-stop meds so they can continue to eat any/everything. But patients who alter & experiment with their diets heal better, with fewer meds.

 

[Kari85]

Hi..
If you can, help him with his diet. The medical community downplays how important diets are with this disease. They basically just want to write non-stop prescriptions. Different diets work for different patients.. and there are a lot of online groups & testimonials that help in understanding disease management.

I believe there is a problematic philosophy with this disease.. where some people take non-stop meds so they can continue to eat any/everything. But patients who alter & experiment with their diets heal better, with fewer meds.

Thank you. His diet is not great. He’s 38 and eats like he lives in a college dorm. Definitely something I need to do some research on.