My gi doctor wants me to take humira. Can anyone tell if the humira as help anyone with there pouchits.
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My son has been on it for 7 weeks and he has had no improvement what so ever.What I don't understand is if pouchits is an infection wouldn't humira make it worse? I know since his last shot he has gotten worse...
Hi jbf,
I have been on Humira over a year now. I had UC, got my pouch which was chronically affected with pouchitis, then was diagosed with CD because of multiple fistulas.
I found it helped GREATLY with the pouchitis. No one seems 100% certain what triggers chronic refractory pouchitis, but there is some researchers/doctors that think it may be another type of automimmune disease triggered when the pouch is reattached. I'm not a doctor-just a patient. And as the Humira has helped with my CD and RA, it has vastly decreased the pouchitis. I went from being on antibiotics every single day for the last 7ish years to being antibiotic free and having maybe 2-3 bouts of pouchitis this past year.
I wish you luck!
gbcronot-it may take up to 3 months for the Humira to work. I'm not saying it is the one thing that will be that perfect fit for your son, but maybe give it a few more weeks.
Wishing health for all,
~Tammy
I have been on Humira over a year now. I had UC, got my pouch which was chronically affected with pouchitis, then was diagosed with CD because of multiple fistulas.
I found it helped GREATLY with the pouchitis. No one seems 100% certain what triggers chronic refractory pouchitis, but there is some researchers/doctors that think it may be another type of automimmune disease triggered when the pouch is reattached. I'm not a doctor-just a patient. And as the Humira has helped with my CD and RA, it has vastly decreased the pouchitis. I went from being on antibiotics every single day for the last 7ish years to being antibiotic free and having maybe 2-3 bouts of pouchitis this past year.
I wish you luck!
gbcronot-it may take up to 3 months for the Humira to work. I'm not saying it is the one thing that will be that perfect fit for your son, but maybe give it a few more weeks.
Wishing health for all,
~Tammy
Pouchitis in most cases is NOT an infection. Antibiotics work because they reduce the bacterial count. It is felt that pouchitis is usually due to an abnormal immune response to the presence of bacteria. One telling thing about pouchitis is that it is mostly associated with pouches of those with IBD of some sort.
There are exceptions certainly, particularly if pathogens are found, like C. difficile or CTM (cytomegalovirus).
Antibiotics also work for small bowel bacterial overgrowth, but in that case, there is no pouchitis (pouch inflammation).
Jan
There are exceptions certainly, particularly if pathogens are found, like C. difficile or CTM (cytomegalovirus).
Antibiotics also work for small bowel bacterial overgrowth, but in that case, there is no pouchitis (pouch inflammation).
Jan
Hi! TammyKathleen
My son is seeing his GI tomorrow and then his surgeon on Friday.He has had issues since his takedown last June.First with several bowel obstructions then pouchitis and over the holidays he developed an abscess and fistula.So it went from indeterminate colitis to definite crohn's.Prior to that they had done a biopsy last August and showed no signs of crohn's disease.Remicade did not work and now the Humira. I know you said that it could take 3 months and that's what his GI said....but to feel worse then before is not normal.Shouldn't he be feeling a little better? Right now his main issue is pain after a bowel movement and pain on his right cheek where the put in the seton...Has anyone experienced pain after a bowel movement ? He has told me if it weren't for that...He wouldn't be feeling so bad...
My son is seeing his GI tomorrow and then his surgeon on Friday.He has had issues since his takedown last June.First with several bowel obstructions then pouchitis and over the holidays he developed an abscess and fistula.So it went from indeterminate colitis to definite crohn's.Prior to that they had done a biopsy last August and showed no signs of crohn's disease.Remicade did not work and now the Humira. I know you said that it could take 3 months and that's what his GI said....but to feel worse then before is not normal.Shouldn't he be feeling a little better? Right now his main issue is pain after a bowel movement and pain on his right cheek where the put in the seton...Has anyone experienced pain after a bowel movement ? He has told me if it weren't for that...He wouldn't be feeling so bad...
Is the pain during a bowel movement too? If so, I'd be thinking in terms of a fissure. The pain from the stool hitting the fissure causes severe spasms in the sphincters, that can go on for an hour or more after a bowel movement.
I agree that after nearly two months of Humira, you'd expect some sort of positive response, and certainly not feeling worse. But, they can't really move on to the next thing before giving it the three months. Of course, if there is something else going on, like allergic reaction, bone marrow suppression, lupus syndrome, that sort of thing, then you need to stop the Humira.
If biologics fail, then they are pretty much left with pouch removal...
By the way, Solomin is in the Montreal area. You may want to send him a PM. He's had a lot of trouble with his pouch too.
http://j-pouch.org/eve/persona...profile&u=1461001921
Jan
I agree that after nearly two months of Humira, you'd expect some sort of positive response, and certainly not feeling worse. But, they can't really move on to the next thing before giving it the three months. Of course, if there is something else going on, like allergic reaction, bone marrow suppression, lupus syndrome, that sort of thing, then you need to stop the Humira.
If biologics fail, then they are pretty much left with pouch removal...
By the way, Solomin is in the Montreal area. You may want to send him a PM. He's had a lot of trouble with his pouch too.
http://j-pouch.org/eve/persona...profile&u=1461001921
Jan
I have been taking Humira for my fistula and it has helped. They changed my dx to crohns and since starting it my rectal pain is gone...starts to creep up right before my new dose but quickly goes away in the days after my shots.
Jan you may be right it could be a fissure cause his pain usually lasts about an hour after going to the bathroom.We will see if his GI will confirm that.Thank you for your advise I will Pm solomin...
gbcronot,
As Jan says, Humira may not be the right biological for your son. Remicade did very little for me. I had success with Humira, but only at a higher dosage than normal-once a week. My GI is now thinking about doubling the dose, and I have also added in methotrexate.
I do know that there is now a test available for Humira to see if the body has built up antibodies, whether the Humira dose is high enough, whether it is lasting until the next injection, etc. I am having this test done to determine whether to go up in dosage or switch to another biological.
It does sound like his pain may be a fissure. I do tend to have some pain from my setons as well.
Bring up all the suggestions on this thread at his next appt. I have found after 8 years that you have to figure out the possible issues, and TELL your doctors to check for these issues. Stay on this site-you will learn just about all the information so you can be the best and more informed advocate for your son. You sound like you're doing a great job.
~Tammy
As Jan says, Humira may not be the right biological for your son. Remicade did very little for me. I had success with Humira, but only at a higher dosage than normal-once a week. My GI is now thinking about doubling the dose, and I have also added in methotrexate.
I do know that there is now a test available for Humira to see if the body has built up antibodies, whether the Humira dose is high enough, whether it is lasting until the next injection, etc. I am having this test done to determine whether to go up in dosage or switch to another biological.
It does sound like his pain may be a fissure. I do tend to have some pain from my setons as well.
Bring up all the suggestions on this thread at his next appt. I have found after 8 years that you have to figure out the possible issues, and TELL your doctors to check for these issues. Stay on this site-you will learn just about all the information so you can be the best and more informed advocate for your son. You sound like you're doing a great job.
~Tammy