Hubby has Crohn's. Need help! New here!

[Crohn'sEmpathy]

My hubby is an old guy. Suffering from Crohn's pretty much his whole life. He was on Remicade and now is on Humira, but the Humira does not appear to be working anymore. He is taking it and prednisone to try and get better. He went through 3 wks where he could not keep anything in his body. Everything he ate went straight through and he was getting dehydrated. His regular Dr. put him back on prednisone at that point and he started improving for a couple of weeks, but now he is back to before the prednisone. Can't see his specialist for awhile (COVID and distance issues.) Hubby says he feels like he is dying and we are quite worried. Any ideas as to what could be going on with him?

 

[Honey]

Hi there and welcome, I am sorry your husband is not so well just now. I too was on Remicade infusions and Prednisolone for a while. Eventually needed a change due to side effects. I was on Pentasa until that became unavailable!
There is no set treatment that suits everyone and you need to be in touch with your doctor, or Specialist to discuss further changes of medicine after tests.
I have been on Salofalk granules this last two years roughly, and doing well. You should be able to have a telephone consultation with your specialist to discuss the problem, and get help.
I hope all goes well and your husband feels better soon.

 

[Crohn'sEmpathy]

Thank you for your reply. It has been hard for my hubby because of the difficulty of getting an appointment in person or by phone with his specialist. It has been a waiting game. In the mean time, he is doing the best he can, guessing at the doses he needs of prednisone to get to well. It sucks not having an expert to advise him.

 

[Honey]

I am surprised you are having to guess the doze of Prednisolone , as this should be monitored. I know, from experience, coming down the amount you take daily, has to be a very slow process or it can cause problems.
Please do speak to your Doctor about this. Flair ups in Crohns is not unusual, so do not worry. Avoid food that aggravates the condition and causes Diarr.... For me, that is rich gravies or creamy sauces. I cannot eat nuts, and I love them!
So look at your diet, too.
I hope this helps. Take care and get well.

 

[my little penguin]

Leave a message for his Gi
Let them know where he is at
And have them call in bloodwork
They should be able to do a virtual appt
We have done this as well as many inperson appt for my kiddo (he has a few specialists)

he was on remicade then humira (5 years or so )
NOw he is on Stelara and doing well past three years

ask to be put on the cancellation list at the Gi
Abd keep bugging them daily
You will get an appt

 

[Delta_hippo]

I would go for urgent blood test and push to see a consultant by phone. If Humira isn’t working there are other drugs to try like Stelara or Entyvio. He might need steroids in the interim.
Diet wise try for easy to absorb nutrients so soups and shakes. Bone broth is good and he might need liquid or spray vitamins if food is going through that fast. Ask him if he is passing blood as if so he will need iron levels testing when they check bloods.
Finally if he is really worried keep an eye on temperature and pulse and if he gets a fever seek emergency medical advice just in case of sepsis.
Good luck and I hope he settles soon.