No remission...but good enough?

[chrisnsteph1022]

When do you call it good enough and quit trying to reach full remission? My GI said I'd be able to tell if Remi was working by the 3rd infusion. I actually saw huge improvements just days after the 1st! :soledance:

However, I'm now 2 weeks past my 3rd infusion. I haven't really improved much past that first huge improvement. Compared to my status 2 months ago, I'm so much better. But I'm NOT yet in remission. I don't have solid poo (don't really care about that, though). I only go 2-4 times/day. Not complaining there. No heavy bleeding, but I do get pinkish mucus once every few days. The pain has gone from a daily 6-7 to a daily 3-4, with a spike here and there up to 6-7. Not as severe or as constant. But still daily. Nausea is completely gone. (woohoo!)

Anyhow, is this just my new norm? Do I accept the fact that I'm going to be in pain every day and just be grateful it's not as bad as it could be? I have my first GI appointment since starting Remicade in a couple weeks. I'm not sure what my goal should be. Maintain the status quo? Look for something to make it even better? If so, what? I'm already on one drug in each class (5ASA, immune suppressant, biologic). I can't do prednisone and entocort is a short-term fix. I do have a whole new bottle of it at home that I could try over the next couple weeks, though. Should I do that?

 

[chrisnsteph1022]

Well, I decided to start the Entocort. I'm going on vacation for a week in a couple days and want to be at my best, so I'm taking 3/day until I see my GI again.

 

[littlemissh]

Perhaps a course of entocort may help the remicade to get your symptoms better.
Have you tried some bowel rest with liquid supplements for a few weeks? THis may help as the bowel has less to do and gets less irritated.

 

[rygon]

I was pretty much like you after my 3rd infusion. Now on my 6th and feel great.

I do get a bit of bloating, mucus, and bleeding every so often but its only a couple of times between infusions rather than the norm. I rarely get any type of pain either.

 

[moogie]

I still have liquid movement and I still go 3-4 times a day. But I have no pain and I feel great.

I do not think you should have any pains if you are to be in remission. Lets hope your new treatment works out.

 

[CRAZYLEGS]

I could tell just a few days after my first infussion that the Remicade was working and continued to improve untill about a week before my third. At that time I was thinking that I was on my way to a remission, but it was not to be. After the third infussion I started feeling the old symptoms coming back and now I'm almost as bad as I was before starting the treatments. I have been in touch with my Dr. and have set up an appointment with him to do a blood test to see if my antibodies are coating the Infliximab. I'm back on Prednisone (50mg) per day. I was wondering if anyone in the forum has had a similar experience and how things went? I am a little disappointed with the results so far. I guess because I had such high hopes before starting the treatments. Good luck to all and thanks in advance for any input. CRAZYLEGS

 

[davidr]

I was wondering if anyone in the forum has had a similar experience and how things went? I am a little disappointed with the results so far. I guess because I had such high hopes before starting the treatments. Good luck to all and thanks in advance for any input. CRAZYLEGS

I had a similar experience (but never did the test for Remicade antibodies). I ended up re-doing the induction regimen and adding Imuran (50 mg). This has kept me in remission for three years and counting (fingers crossed).

 

[CRAZYLEGS]

My Dr. put me on Imuran and it almost did me in!! I was in the emergency ward for 2 days. They finally found that the Imuran stopped my bone marrow producing blood. Be sure that you have blood tests to see how your body is accepting the medicine! I was in the hospital for 10 days! Thanks for the reply, CRAZYLEGS

 

[SdN]

How have things been chrisnsteph? Did your GI give you any useful info at your last visit?

 

[PatrickL]

I'm not sure this works for everyone, but for recovering from my last two flares I went on a starchy diet. Cheerios and non-dairy milk for breakfast. White bread, low-fat, cold cut sandwiches at lunch. Potatoes and chicken for dinner. Snack was pretzels. Became solid within 3 days.. well.. solid for us. It really seems the disease affects everyone in a slightly different manner, but I was told by my GI that eliminating the fiber and eating "sticky" foods was going to be better for the health of my colon and reducing inflammation.

 

[Slim Johnson]

I'm not sure this works for everyone, but for recovering from my last two flares I went on a starchy diet. Cheerios and non-dairy milk for breakfast. White bread, low-fat, cold cut sandwiches at lunch. Potatoes and chicken for dinner. Snack was pretzels. Became solid within 3 days.. well.. solid for us. It really seems the disease affects everyone in a slightly different manner, but I was told by my GI that eliminating the fiber and eating "sticky" foods was going to be better for the health of my colon and reducing inflammation.

I came to a similar diet on my own. I have added some veggies (since surgery,) and rather than cereal, I try to have a yogurt, or muffin. I also eat pizza about once a week. It is the only real deviation from the normal meat and potatoes dinner, or sandwich lunch (man do sandwiches get boring!).

 

[Irene3]

With infliximab I was on imuran too, and the crohns symptoms didn't improve with imuran at all. Im now taking 6mp, and will beggin humira in a few weeks, and I'm hoping the two together, are great for the crohns symptoms. As far as remission, so many on here say they do have remission with infliximab or humira, but I guess ask your GI if he thinks entocort as well, with the infliximab.
Best wishes. xo