After a scope, it appears my 13 year old son has severe cuffitis. -- the GI is calling it refractory cuffitis since my son had refractory UC -- and thinks he will need steroids to get him into remission and then maybe biolgics to keep him in remission. This is confusing as remicade already did not work for him causing him to have his colon removed in emergency surgery. A top surgeon in LA says he has a 15% chance that he would NOT be successful in trying to do pouch advancement or redo to take the cuff off, so we need to medically manage...My GI is in touch with Dr Shen but it does not seem like there are a lot of new choices out there for refractory cuffitis. The only thing apparently being tried in Cleveland is steroid injections into the cuff. Has anyone tried that and what have been their experiences with it? Is anything else new being tried for refractory cuffitis? have people had success with biologics for cuffitis? Thank you.
Replies sorted oldest to newest
I am sorry to hear of your son's situation. I too have refractory cuffitis. I take daily canasa suppositories and interchange them with anucort suppositories. I also have luck with cipro when things become severely irritated and uncomfortable and use rectiv (causes awful headache but helps with burn and itch from the inflammation in anal canal) and nifedipine cream as well as prescription numbing creams to help at times.
I was told last October I needed pouch advancement surgery for my situation as my inflammation was about an 8 out of 10 in the cuff and anal transitional zone and I have a small ulcer at my anastomosis connection that just will not heal. I still fight it daily as I am concerned about having more surgery.
I live with a pretty constant level of discomfort to some degree in my cuff with occasional bleeding on and off. This is very new for me as I never had issues in the rectal/anal area with my UC until this surgery so it is also very frustrating and uncomfortable.
I was told by my surgeon that the steroid injections are not a good long term solution, but then again he is a surgeon and not a GI like Shen who also recommended this option for me as has my GI. When my surgeon could not guarantee I would not continue to have issues even after advancement surgery, I bowed out of this option. I also have a stricture at my anastomosis so I was concerned about more strictures after advancing the pouch which I understand can occur.
I think your approach moving forward depends on how debilitating your son's symptoms are and how long he has tried topical medications and whether you are willing to try any other biologics that may help. He may need canasa continually to help with his symptoms and although it is no real treat taking this daily, I would opt for it over pouch advancement surgery if it helps. Also, he should be able to alternate with anucort also as that is what I do.
If however, your son is in constant pain and bleeding regularly, is going to the bathroom more than he should be and the meds are not helping, he may have no option other than to remove the cuff and advance the pouch or opt for a permanent ostomy.
I know surgeons and GI's do not like to medicate with powerful drugs like 6 mp or biologics for such a small section of disease, but then again, they are not facing the option of possible permanent ostomy without meds to help treat our remaining disease, no matter how small the affected area may be. I find my symptoms with cuffitis are way more debilitating than my symptoms with UC EVER were and my UC affected 3/4 of my large intestine.
Good luck moving forward. I honestly would opt for the steriod injections if I am ever faced with his situation. I feel we have nothing to lose by taking this approach prior to more surgery.
I was told last October I needed pouch advancement surgery for my situation as my inflammation was about an 8 out of 10 in the cuff and anal transitional zone and I have a small ulcer at my anastomosis connection that just will not heal. I still fight it daily as I am concerned about having more surgery.
I live with a pretty constant level of discomfort to some degree in my cuff with occasional bleeding on and off. This is very new for me as I never had issues in the rectal/anal area with my UC until this surgery so it is also very frustrating and uncomfortable.
I was told by my surgeon that the steroid injections are not a good long term solution, but then again he is a surgeon and not a GI like Shen who also recommended this option for me as has my GI. When my surgeon could not guarantee I would not continue to have issues even after advancement surgery, I bowed out of this option. I also have a stricture at my anastomosis so I was concerned about more strictures after advancing the pouch which I understand can occur.
I think your approach moving forward depends on how debilitating your son's symptoms are and how long he has tried topical medications and whether you are willing to try any other biologics that may help. He may need canasa continually to help with his symptoms and although it is no real treat taking this daily, I would opt for it over pouch advancement surgery if it helps. Also, he should be able to alternate with anucort also as that is what I do.
If however, your son is in constant pain and bleeding regularly, is going to the bathroom more than he should be and the meds are not helping, he may have no option other than to remove the cuff and advance the pouch or opt for a permanent ostomy.
I know surgeons and GI's do not like to medicate with powerful drugs like 6 mp or biologics for such a small section of disease, but then again, they are not facing the option of possible permanent ostomy without meds to help treat our remaining disease, no matter how small the affected area may be. I find my symptoms with cuffitis are way more debilitating than my symptoms with UC EVER were and my UC affected 3/4 of my large intestine.
Good luck moving forward. I honestly would opt for the steriod injections if I am ever faced with his situation. I feel we have nothing to lose by taking this approach prior to more surgery.
Cipro also helped my son --so I assumed that meant he had pouchitis in addition to the cuffitis as the cipro helped reduce the frequency. He had been on cipro for a month and still had severely inflamed cuff. Thank you for information about the creams - I had not heard of them. It looks like nifedipine is prescription. My son has barely any bleeding but the bigger problem is he cannot gain weight and currently has a PICC line in and is on his 5th week of TPN after losing 19 lbs this year as he went from UC diagnosis to emergency colorectomy to J Pouch to takedown. It seems like the steroid injections would be preferable than biologics for overall health reasons....
p.s just to add, Jeanne - sorry you are suffering and thank you for sharing this info. It is helpful for me as we try to navigate thru...
Could his weight loss be mainly due to the loss of weight from Uc and the surgeries?
yes - he has so much weight loss because of UC and 3 surgeries, but since his takedown in April he cannot eat enough to gain any weight back and now is he having intermittent nausea too. Sometimes I think maybe the TPN is making it hard for him to eat a lot -- that it may bring on the nausea. The nausea is more in the morning when he has completed his 12 hours of TPN.
Yeah, sometimes you have to dial back the TPN for the appetite to return. But, if he is still having a lot of gut issues, it definitely is a balancing act. When they are young like this, there is not much wiggle room and you need to maintain a certain level of nutrition or growth is stopped or retarded. Plus, he is at that age when there is supposed to be a growth spurt starting. The good news is that boys generally lag behind girls quite a bit, so he has plenty of time before the bone ends close for good, like into his 20s.
Jan
Jan