Just spent 8 days in the hospital and think I might have to go back

[zx150]

Had my first Remicade infusion on 11/22 and it seemed to have no effect on my Crohn's.

Went into the ER on 12/03 and spent 9 days in the hospital. Cat scan showed that my colon was so inflamed/swollen that it was squeezing out my kidney and bladder making it nearly impossible to urinate. I was also running 102 fevers almost nightly before going in. While in the ER they discussed removing a portion of the colon and small intestine but they opted to hold off for now. Also while in the hospital they did another infusion of Remicade. I was discharged on Prednisone 3x a day along with Oxycodone for the pain.

After I was discharged from the hospital I started to feel better every day and even started to have normal bowel movements for the first time in over 4 years. Unfortunately yesterday I started having pain again and this evening the pain is pretty bad. I'm almost in as much pain today as I was before I went into the hospital, pain killers don't seem to be doing anything unfortunately.

Don't really know what answers I'm looking for but I'm starting to get the impression that the Remicade isn't working for me. What's stronger than Remicade? I'm sick of being sick and I really don't want to go back to the hospital.

 

[Crohn's 35]

:welcome: to the forum! If two oxy's arent working I would say you are in alot of pain. Remicade is the stronger of the 3 biologics, but it is mouse protein. Humira is Human protein, it could work but it takes time to work. Remicade takes about 6-8 weeks and Humira can be the same if not longer. Prednisone usually works but not good for long term. I know you dont want to go into the hospital, no one does even to visit but you could cause more serious problems if you don't. Are you from the states? Hope you get relief soon. Glad you found us. Lots of others here to help you.

 

[mickey]

Think about what you ate/drank in the hospital. You then changed food/drink when you arrived home and after a few days you went back to pain. Could be something you ate/drank that is flaring it up? While it is great to hope for a drug to help stop the pain, figure out what caused it, so you can get rid of it. The hospital probably gave you a restricted diet and I would highly recommend considering doing the same.

Drinks have SOOO many preservatives in them, too much sugar, etc. and that does not help promote good health. Better to avoid, since diseases get worse whenever you have sugar in the body. Food has the same issues.

 

[tiloah]

Remicade is a great drug, but it doesn't work overnight. It takes time to build up to a therapeutic level. When you think about how long it has taken to get to how much inflammation and disease you have now, it makes sense that it would take a long time to reduce it back to a healthy level. It's possible you are just past the point where Remicade can help you (in the immediate). You may end up needing the surgery in the end, but that might be what the Remicade needs to be able to work best for you.

I am so sorry you are dealing with so much pain and sickness. I know it is not fun. I hope whatever happens you find something a treatment that works for you and has you feeling better. Good luck. I will be sending healing thoughts your direction.

 

[zx150]

Thanks for the advice! I am in the states. The hospital did have me on a restricted diet so I guess I'm going to get myself back to as much of a liquid diet as possible. Since I've been out I haven't gone hog wild with my eating but I guess I did too much for my stomach lol.

 

[mickey]

When having a bad run of it, I would highly suggest a liquid/bland diet to calm the belly and then begin rebuilding, once you have a calm belly. Ginger tea (piece of ginger placed in hot water, rather than preservative teas), belly rubs, warm soups, etc. will help your belly reduce inflammation and help it heal. If you can do a week on that, do it. You will feel great. There was a time I had to live on Ensure for a month as my only source of food. I felt GREAT! Now that I am over 40 I do not consume soy, but then (early 20's) it was fine. It has the vitamins, nutrients, etc. that still give you the bulk you need for movements and I honestly did not want to go back on food. I felt like I gained hours in the day by not having to plan meals, etc... That may be an option; depending upon your condition. Many options out there, but remember to be good to your body and listen to it!