Appetite loss

So my son was recently diagnosed with severe pancolitis. He is on steroids and has had his first Remicade infusion two weeks back. He is not improving and I m concerned about his loss of appetite and hemoglobin level. His hemoglobin had fallen to 5.6 and he had to go to the hospital for tat. We had his blood test done last Thursday and still no word about the results from the GI doctor’s office. Is there a quick way to get the hemoglobin level? Is loss of appetite normal inspite of being on steroids?

Have they done an Iron panel? If he is deficient, I would ask about Feraheme. It worked really fast for me.

Usually the first flare is the worst because of the time it takes to diagnose it and the medicines that we take are typically slow acting. Loss of appetite is normal and at some point (a few weeks) the steroids might kick in and change his appetite to become ravenous (common side effect of steroids).

How old is your son? Is he seeing a pediatric GI or a regular GI? If I could give one piece of advice to a newly diagnosed patient/parent it would be to find a GI who specializes and specifically focuses on IBDs. Once I started going to an IBD specialist my health improved. Most GIs don't deal with IBDs on a regular basis, they are good at c-scopes, diverticulitis, etc but IBDs can be complex and it's best to find a GI capable of relating to your son issues and treating him. You'll find IBD specialists at most universities and teaching hospitals.

Steroids are the IBD treatment with the worst side-effects and aren't a long term solution, you need to find a treatment to get him off them as soon as possible. Have you discussed biologicals like Remicade or Humira? They are well studied drugs and are very well tolerated.

Loosing 20-30 pounds is rather typical for a severe UC flare, from what I've read/heard over the years. I dropped from 150 pounds to 123 pounds during my worst flare in about 3 weeks and the bones within my ribs and spine were all very apparent. We can relate, and assure you that once the right solution is found his weight will stabilize, start slowly gaining, and then he'll regain weight at a better clip as the prednisone insatiable appetite takes over.

Is he on IV-steroids (or tablet prednisone), IV cyclosporine, or tacrolimus? If not he should be to buy you time for the remicade to kick in. Double-dose remicade (10mgs per kilogram instead of 5mgs per kilogram) can also be used for rescue (like the IV steroids etc.)

I had my first positive response a week after my second infusion (week 3), a much bigger improvement a week after my third infusion (week 7), and slow and steady improvements thereafter until I achieved a remission. Internal healing takes time.

Mamabear, as IPoop pointed out often these medications take time to work. I know there are stories out there of people having an immediate good result, but keep in mind we all are different, including the extent of the disease. When I was first put on Remicade for crohns & 3 years later dx'd pancolitis was added. It wasn't until the 3rd infusion before I could tell a difference. And, it needs to be tailored to the patient's needs. My dose was doubled & I went every 4 weeks for an infusion. My dr said if we had to, we could do an infusion every 2 weeks to get me out of a rough spot.

Your son may be a little worried about eating & trying to handle school & be around friends. At his age, that is a tough balance. I had a resection in 2002 that left me with explosive diarrhea for years. I got the idea if I didn't eat, perhaps it would slow things down. Well, that sort of thinking got me in trouble.

Something to consider is looking online for Boost Breeze. I like the fruit type drinks, my gi always ordered them for me when in the hospital. I have not been able to find them in any store in years but they are still available online. I am never without them.

If you still do not have his lab results back, call & talk to the nurse.

Yes we were able to see the specialist today. He didn’t change the treatment plan but explained everything clearly. He did mention that we might have to go the surgery route in future which right now is a scary thought. I m praying for Remicade to work.

mamabear18 said...
Yes we were able to see the specialist today. He didn’t change the treatment plan but explained everything clearly. He did mention that we might have to go the surgery route in future which right now is a scary thought. I m praying for Remicade to work.

There's certainly nothing wrong with wrapping your head around all possibilities including an emergency surgery (as coming to terms is often the most difficult hurdle to jump over). And I want to assure you that no matter which path his treatment takes, it will result in a good quality of life. Remission with remicade would make him pre-diagnosis, and essentially normal. There's been a number of success stories with Remicade here over the years (mine included). We have several regular posters who have had the surgery, now have an IPAA/j-pouch and are out there enjoying life post-UC without the inherent worries of a chronic illness flaring unexpectedly. With a j-pouch you can live life without limits, and are free of doctors and medications thereafter.

For now, learn what you can about those possible eventualities. Often we have fears/worries that are misconceptions and by learning more and researching we find out those things aren't all that bad after all.

Post Edited (iPoop) : 7/12/2018 1:51:47 PM (GMT-6)

Sorry to hear your son is suffering. How long has he been on the prednisone and what dosage is he on? There are still a lot of other medications that he could try before going the surgery route.