Looking for suggestions....

[ErinThinn]

HI! My husband of 13 years has had Crohn's for the last two decades. He does Remicade infusions every 6 to 7 weeks and has done this since his initial diagnosis. I did not know him when he was first diagnosed but from what he has told me, what he went through before they figured out what was wrong was horrendous and he is so glad the the Remicade has worked as well as it has for as long as it has. His only option for when the Remicade does not work for him any longer is to have a colostomy bag put in place. This does not frighten him in any way but he is worried that I will look at him differently. In the last three years, he has begun to develop some issues such a transsphincteric fistula. This has caused an already bad situation at his back door to become even worse. I am the one that has to treat the area when it becomes inflamed and irritated but it is still hard for him to have to let me help him. I want to make it clear that I do not mind in the slightest that I have been asked to do this. He, on the other hand does not see it this way. He feels that I look at him as one of my patients that I care for and I am having some issues in trying to convince him that he is not. That, for better or for worse, we are in this together. I was wondering is there are any suggestions out there that could help him deal with his fears since my reassurance does not seem to be sinking in. I can not imagine what a full blown attack would look like since we have been lucky enough that his is in remission and that his treatments are working. I struggle with him struggling and was just looking for other spouses who might be going through the same thing.

 

[my little penguin]

Remicade was the only option 13 years ago
Today that are plenty of options if remicade is failing
My child was dx at age 7
Now 18
He was on remicade for 8 months
After that humira for 5 plus years
And currently has been on Stelara for over 5 years
Please make sure he gets a second opinion
Remicade definitely is not the only option

 

[ErinThinn]

The Remicade is working for him still. he had his levels tested two weeks ago and things were ok according to his GI. My husband lives by the rule that if its not broke, then don't fix it. If the drug is still working for him, then he will stick with it until it no longer does or he has to have a bag put in place. I think for him, routine and habit have become a way for him to deal with his disease so that day to day functions are not an issue. I have learned a lot about routine as I used to just do what I wanted when I wanted but for him, he is so structured that I have become that way myself. Spontaneity is not in his vocabulary. Everything we do is planned out and I could tell you where each and every good bathroom is from where we live to up to 8 hours away in almost every direction. This deep seated need to be cautious about every trip you take was something that I was not used to, at first. I am now and I understand why he does what he does. Its like his form of security in a world where some look at people who have inflammatory bowel issues as lesser people. I have seen first hand how people look at him when they find out he has Crohn's. Some look at him like they don't believe him because they expect him to be super skinny and he is not. Some look at him like he is just looking for special treatment or as an excuse for whatever reason. He doesn't notice much now but I still do. Its sad. Crohn's can be a very isolating disease and he is struggling right now with COVID and his disease plus also dealing with stage three CKD. I am struggling with dealing with how to get him out of his funk when I am struggling myself to try and stay positive in a time where that seems to be a difficult thing to do.....

 

[Honey]

The Remicade is working for him still. he had his levels tested two weeks ago and things were ok according to his GI. My husband lives by the rule that if its not broke, then don't fix it. If the drug is still working for him, then he will stick with it until it no longer does or he has to have a bag put in place. I think for him, routine and habit have become a way for him to deal with his disease so that day to day functions are not an issue. I have learned a lot about routine as I used to just do what I wanted when I wanted but for him, he is so structured that I have become that way myself. Spontaneity is not in his vocabulary. Everything we do is planned out and I could tell you where each and every good bathroom is from where we live to up to 8 hours away in almost every direction. This deep seated need to be cautious about every trip you take was something that I was not used to, at first. I am now and I understand why he does what he does. Its like his form of security in a world where some look at people who have inflammatory bowel issues as lesser people. I have seen first hand how people look at him when they find out he has Crohn's. Some look at him like they don't believe him because they expect him to be super skinny and he is not. Some look at him like he is just looking for special treatment or as an excuse for whatever reason. He doesn't notice much now but I still do. Its sad. Crohn's can be a very isolating disease and he is struggling right now with COVID and his disease plus also dealing with stage three CKD. I am struggling with dealing with how to get him out of his funk when I am struggling myself to try and stay positive in a time where that seems to be a difficult thing to do.....
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It is a challenging and fickle illness: what treatment works for one doesn't necessarily work for another. I hope he improves soon . Best wishes.