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mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/10/2018 6:59 AM (GMT -6)   
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?

iPoop
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Date Joined Aug 2012
Total Posts : 13200
   Posted 7/10/2018 7:12 AM (GMT -6)   
A loss of appetite is very common with severe inflammation. As we frankly feel awful and food is the very last thing we're thinking of. It's also very easy to associate eating (input) with the delayed pain of bms (output) and therefore greatly reduce what we eat.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like an american football quarterback on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

Tristan1974
Regular Member


Date Joined May 2018
Total Posts : 44
   Posted 7/10/2018 8:03 AM (GMT -6)   
Have they done an Iron panel? If he is deficient, I would ask about Feraheme. It worked really fast for me.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 7/10/2018 9:51 AM (GMT -6)   
I am sorry you're going through this. I hate hearing about children suffering with this illness. Strange to not hear about those blood test results sooner. It usually takes only about 1 day to get blood results. Do they have a patient portal where you can look for yourself?

I never had any appetite when I was flaring severely. Eating means frequent, painful trips to the toilet, and for me, it wasn't worth it. Remicade is a great option, but some people take longer to respond, and some do not respond at all (about 60% respond). It's good that he's on steroids to help stabilize until the Remicade works. When did he start steroids? What is the starting dose? How much does he weigh? I've had steroids take a couple weeks to get me feeling better. Once I felt better, I couldn't stop eating.

Did he have stool tests?
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 7/10/2018 11:23 AM (GMT -6)   
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.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/11/2018 6:57 AM (GMT -6)   
My son is 18. Yes they did do iron infusion at the hospital. He has lost 30 lbs so far and it’s quite scary. We have our second Remicade infusion today, keeping my fingers crossed. He sees a GI Doctor at a private practice but I am trying to get an appointment at a teaching hospital. Luckily we have very good doctors in town but it’s hard to get appointments with these specialists, I am trying.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13200
   Posted 7/11/2018 7:44 AM (GMT -6)   
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.)

mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/11/2018 8:28 AM (GMT -6)   
He did get IV steroids at the hospital now he is on oral 40 mg prednisone. I am hoping the Remicade will work. We didn’t see much difference after the first infusion.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13200
   Posted 7/11/2018 8:35 AM (GMT -6)   
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.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like a footballer on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/11/2018 9:39 AM (GMT -6)   
Thank you we are trying to stay positive.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16776
   Posted 7/11/2018 10:52 AM (GMT -6)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 7/12/2018 1:51 PM (GMT -6)   
I lost 55 lbs in 8 weeks. You could see my ribs and spine.

Call the specialist and say that your son just got out of the hospital and his situation. They usually have opening for more severe cases.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/12/2018 2:32 PM (GMT -6)   
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.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16776
   Posted 7/12/2018 2:37 PM (GMT -6)   
By chance is he on any other medication to help the Remicade, such as Imuran? A lot of us were on Imuran as my dr explained it helped the Remicade work a little better & helped slow down developing antibodies to the Remicade.

How often are his infusions? I am sure you are stressed to the max right now, but perhaps it's time to look for an IBD specialist for a 2nd opinion.
Susie
Moderator in Chronic Pain & Psoriasis Forums

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13200
   Posted 7/12/2018 2:48 PM (GMT -6)   
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. smile

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


mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/12/2018 6:48 PM (GMT -6)   
Yes Susie he is on a medication that prevents the antibodies from forming.
Thank you ipoop for ur encouraging post.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/12/2018 7:28 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.
34 years old; diagnosed UC March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 25 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

mamabear18
Regular Member


Date Joined Jul 2018
Total Posts : 25
   Posted 7/13/2018 8:33 AM (GMT -6)   
Yes he is on 40 mg daily.
He had his 2nd Remicade infusion on Wednesday and did great yesterday. But his loose stools are back today. Maybe the IV steriod with Remicade infusion made the difference for a day.
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