Symptoms aren't too bad-- start meds anyway?

[Katharine]

My husband Jon has Crohn's disease, but it has not been too hard on him yet compared to some of the stories we've heard from others dealing with the disease. About a year and a half ago, he started having severe abdominal pain that landed him in the ER a couple of times. The first time they thought it was diverticulitis and sent us home with some medicine. The next time they thought it was "Meckle's Diverticulum" and sent us home with meds again. The third time he wound up staying for almost two weeks on nothing but liquids and then nothing at all while the resident GI and surgeon were debating what the problem was and whether surgery was necessary. Thank goodness, the surgeon won (GI was a jerk who didn't agree that Jon had Crohn's at all) and did a surgery removing about a foot of the lower ileum.

Since then, Jon's been doing pretty well except for the occasional (like once every few months) "flare" or what we think is a flare-- pain/discomfort, constipation, and sometimes blood in the stool. He is tired more easily than before and his new GI put him on iron and B vitamins, which has helped.

He's been on a restricted-carb and sugar diet, too, loosely based on the SCD and Maker's diets. Not completely off carbs and sugar, but just limiting them carefully. He can really tell a difference when he overindulges.

Anyway, his last procedure was a routine colonoscopy that unfortunately the Dr. wasn't able to complete due to a stricture at the entrance to the small intestine (?). She said it was too narrow for the scope. Then prescribed Entocort, which had such bad side effects (dizziness, bad chest pain, etc) that he didn't take it for more than a few days before we realized it was not right for him.

So now the Dr. wants him on either Remicade or Humira. We asked if he really needed it if he's feeling ok and pooping ok (lol) for the most part, and she said feeling well wasn't enough. She wants him in remission.

But from what I've been reading, these meds probably won't work for more than a few years before Jon becomes immune to them-- and then he'll get back to where he is now?

So my question is, should he start these meds if he basically feels ok? Or is that stupid? Should he wait and see how he does without them and start them if he worsens, or is that a bad idea?

The GI clinic in our area doesn't have a great reputation for helping their patients, so I was hoping some of y'all here could advise!

Thanks so much.

Katharine

 

[afidz]

Hello, welcome!
Crohn's has been known to attack silently; do severe damage with out any of the symptoms. Its honestly best to stay on some type of "maintenance med" at all times. Yes, in some cases meds like Humira and Remicade do stop being effective over time, but its different for everybody. If you start the meds now, it might help to reduce the stricture (as long as its not scar tissue) and reduce the possibility of surgery.
Let me know if you have more questions, I will be glad to help with what I know, and if I don't know I can certainly point you in the direction of someone who does, again, welcome!

 

[alex_chris]

Hmmm, so your husband has had surgery before but did not take any long term meds to keep him in remission like aza?

If there really is a stricture then something has to be done. I had one surgery to remove a stricture in 2003 and before then I also always said that I feel well for the most part... Although I definitely was not in remission.

I would definitely not recommend biologics like Humira or Remicade to anyone who is generally not doing badly. But your husband already had one surgery and now there is another stricture (which might just be big swelling due to inflammation without any scarring yet, so it is reversable).

If he cannot or does not want to take cortisone drugs like Entocort, he needs to do something else to stop the inflammation. If he doesn't, with his history this might lead to another surgery and that definitely is not good. Immunsuppressives likes azathioprine won't help very fast but take months, so to be honest biologics seem like the best thing to do in this situation. There is a very good chance they will really put him in remission and that in a few months this stricture widens again. That is definitely the better option than another potential surgery down the road.

 

[Katharine]

Thank you afidz and alex_chris

So the general concensus is that if he has a stricture, it ought to be treated and reversed (if possible) because waiting will likely lead to complications and possible surgery?

Makes sense to me... Jon sees the GI today. I think he is planning to tell her he wants a second opinion before starting the meds, but I will definitely tell him what y'all said.

Thanks again,

Katharine