Does any one with a pouch over 30 yrs old take low dose budesonide for pouchitis? If so, how long have you taken it and did you have any side effects from taking long term?
Thanks
Original Post
Replies sorted oldest to newest
Dang! I really hope I last that long and above! You must be really lucky!
My pouch is only 14, but I've been on budesonide for about 5 years and so far I haven't had any side effects from taking it this long. My pouch was misbehaving majorly when I began taking taking it. I couldn't sleep a full night without having to empty my pouch. My GI prescribed budesonide along with Imran and Amitriptylin to help me. I'm also on Entyvio, but that didn't start until a couple of years ago. I am so thankful that this combination has helped me sooo much! I sleep much better without my pouch keeping me up all night.
Each of the medicines I'm on carry warning labels and to be honest I am concerned about the long term affects. However, I realize my life is so much better with the meds, that it was without them. I actually feel like I have a life.
Congratulations on being a 30 plus year j poucher! May the Lord bless you with many more wonderful, health filled years.
what us budesonide? I've had my jpouch for 34 years never heard of it.
@leask posted:what us budesonide? I've had my jpouch for 34 years never heard of it.
Budesonide is a corticosteroid or steroid (cortisone-like medicine). It works by preventing inflammation (swelling). It can come in forms of: inhalers, pills, and enemas 
@Still Standing posted:My pouch is only 14, but I've been on budesonide for about 5 years and so far I haven't had any side effects from taking it this long. My pouch was misbehaving majorly when I began taking taking it. I couldn't sleep a full night without having to empty my pouch. My GI prescribed budesonide along with Imran and Amitriptylin to help me. I'm also on Entyvio, but that didn't start until a couple of years ago. I am so thankful that this combination has helped me sooo much! I sleep much better without my pouch keeping me up all night.
Each of the medicines I'm on carry warning labels and to be honest I am concerned about the long term affects. However, I realize my life is so much better with the meds, that it was without them. I actually feel like I have a life.
Congratulations on being a 30 plus year j poucher! May the Lord bless you with many more wonderful, health filled years.
Thank you so much for replying. It’s good to hear your able to have a quality of life while taking these meds.
may I ask what you take the entyvio for? My GI spoke about biologics but I’m deathly afraid of those.
@Former Member posted:Dang! I really hope I last that long and above! You must be really lucky!
Lauren of emerald city please stop replying on my threads you know nothing about. This thread is for people with long term pouches or people taking budesonide.
Plus stealing my information from this forum and contacting me privately is a big NoNo
@leask posted:what us budesonide? I've had my jpouch for 34 years never heard of it.
Budesonide has been helping me deal with my pouchitis. Just recently I came down with a bad case of pouchitis from cdiff so I can’t take antibiotics to treat pouchitis. This budesonide has been a miracle drug but it is a steroid.
congrats on 34yrs!
I am not a 30 year veteran jpouch yet but am living 19 years with a jpouch from having familial adenomatous polyposis as the reason for colectomy
That said my gastroenterologist of 19 years spoke of budenoside/endocort pills in the form of 9 milligrams one pill daily as I also carry. Two separate/additional diagnosis that are awaiting my part d silver script Medicare prior authorizations so they can be filled.
Did you ever gain steroid weight from the drug? Did it cause moon face? I let my gastro know i don't want to go on immunisuppresssives/steroid meds fir the reason of diet modification/my weight loss journey. . at 160 lbs 5 feet tall and used to eat wrong and weighed heavily 240 lbs was my previous weight 8-10 months ago.
He stated 9 milligrams daily for a 2 month treatment course to treat my ibs-d and microscopic colitis shouldn't effect my weight gain wise.
I expressed to him. lets try me on 5asa mesalimine 2x a day which is not a steroid because im not comfy with prednisone like meds/budenoside.
That said, im curious what yours and others experiences are/were. I have microscopic colitis and irritable bowel syndrome with diaarhea everything should respond to IBD like meds that folks take for other forms of IBD like ulcerative colitis and crohns.
Don't want to make you feel @ycrockpot that I hijacked your thread so hope you dont feel that way.
Best Wishes!
Len
@DoughBoyInPHL78 posted:I am not a 30 year veteran jpouch yet but am living 19 years with a jpouch from having familial adenomatous polyposis as the reason for colectomy
That said my gastroenterologist of 19 years spoke of budenoside/endocort pills in the form of 9 milligrams one pill daily as I also carry. Two separate/additional diagnosis that are awaiting my part d silver script Medicare prior authorizations so they can be filled.
Did you ever gain steroid weight from the drug? Did it cause moon face? I let my gastro know i don't want to go on immunisuppresssives/steroid meds fir the reason of diet modification/my weight loss journey. . at 160 lbs 5 feet tall and used to eat wrong and weighed heavily 240 lbs was my previous weight 8-10 months ago.
He stated 9 milligrams daily for a 2 month treatment course to treat my ibs-d and microscopic colitis shouldn't effect my weight gain wise.
I expressed to him. lets try me on 5asa mesalimine 2x a day which is not a steroid because im not comfy with prednisone like meds/budenoside.
That said, im curious what yours and others experiences are/were. I have microscopic colitis and irritable bowel syndrome with diaarhea everything should respond to IBD like meds that folks take for other forms of IBD like ulcerative colitis and crohns.
Don't want to make you feel @ycrockpot that I hijacked your thread so hope you dont feel that way.
Best Wishes!
Len
Hi Len,
Thank you for replying, I don’t want anyone to feel they hijacked my postings.I appreciate all the replies about budesonide. It was just for that particular person. No one else on here does what she does.
I’m pretty lucky I’ve been medicine free for about 30yrs of course occasionally antibiotics, but the last 10yrs have gotten harder. I changed GI docs and found one that specialized in the pouch here in NYC and it’s been a blessing.
I had side effects to the meslamine, that’s when I started the budesonide 9mg for 2 months, to me it was a miracle pill. Ever since I stopped I returned to extreme diarrhea, she suggested 3mg daily, I feel pretty good. I do have osteoporosis so now I take meds for that. Seems like a good thing for the pouch turns out to be a bad thing for something else.
Regarding weight, I’ve always watched what I ate, and because budesonide slows everything down, I don’t need to eat that much. Which is a good thing, maybe I lose some lol.
Crockpot
Could you share what specific side effects you experiences on mesalimine 5asa? I am awaiting that drug getting prior auth approved through part d silver script . I understand its less invasive but does the job like an immunoppsuppressive med. I hope it won't cause me to increase in weight. I go walking anywhere from 3 to 6 miles daily most days. Im not versed in IBD meds aside from my googling for info.
I know every med doesn't effect every body equally in terms of side effects. And some get none while others will/do experience them.
Im glad your pouchitis is helped and kept at bay with endocort/budenoside. I might consider that med if mesalimine 5 does not take care if my ibd/urgency/ and microscopic colitis. Those are tough and newer diagnoses with me while familial polyposis is an inherited defect genetically speaking your born with
I changes my diet near a year ago and I drink a lot water a jug one gal almost dailyihave had renal failure. Acute variety in June 2019 emergency temp dialysis in icu.im 42 years old and lifestyle changes e as the best thing I could do.more energy and reversed my type 2 diabetes .its in remission. Have kidney stone issues from dehydration issue and on and off bouts of ibs-d and it sometimes has effect on my creatinine.
Good to know budenoside has helped keep your pouchitis/frequency and diarrhea in check.
Xiafaxin might have touched on some of my i flammatory process in the intestines but it didnt fully work on/take away my problem or on going issues.then sometimes what works on knew patient didnt work for another. No two sick people with the same ailment are alike.
I know you know this already and understand.
Appreciate conversating with you!
Good luck & thank you.
-len
I was asked why I'm on Entyvio along with Budesonide, and Imuran. I had inflammation in my pouch that wasn't healing. Since adding Entyvio to the mix, the inflammation has decreased and my pouch has been behaving much better.
Hi Len,
My insurance would not approve the meslamine So the doc gave me MESALAMINE DR 1.2GM DR TAB cost me $60 with insurance. I had swelling in my legs & ankles. Hopefully yours is approved and you don’t have side effects. You sound like you’ve been through the mill with your health issues, hopefully it works for you.
I hate that I pay all this money for prescriptions then it turns out I can’t take it.
good luck you,
yvonne
@Still Standing posted:I was asked why I'm on Entyvio along with Budesonide, and Imuran. I had inflammation in my pouch that wasn't healing. Since adding Entyvio to the mix, the inflammation has decreased and my pouch has been behaving much better.
Thank you for answering my question. It’s good to hear your doing well on it!
@ytcrockpot posted:Lauren of emerald city please stop replying on my threads you know nothing about. This thread is for people with long term pouches or people taking budesonide.
Plus stealing my information from this forum and contacting me privately is a big NoNo
I was giving a compliment and I know a lot about your threads, I was trying to help you out.
I never stole your information. All of my information comes from the internet and people I talked to.
Why are you being so mean to me?? I have been nothing but nice to you.
@Former Member posted:I was giving a compliment and I know a lot about your threads, I was trying to help you out.
I never stole your information. All of my information comes from the internet and people I talked to.
Why are you being so mean to me?? I have been nothing but nice to you.
Your stole my email address from another post on this site and started sending me emails. Never gave you permission to do that.
you are now blocked from my email and on this site.
@ytcrockpot posted:Your stole my email address from another post on this site and started sending me emails. Never gave you permission to do that.
you are now blocked from my email and on this site.
I have done that many times to people on here and nobody ever had a problem with it, everybody was really friendly about it. Since I offended you, I apologize and I will leave your posts alone.
My pouch is only 16 years old, but I have a colitis-like inflammation there and in the last part of the ileum ever since. In the earlier years I had perhaps 2 treatments with budesonide for about 8 weeks, that's the usual application.
Now I'm on Entocort for 7 years, mainly 2x3 mg per day which seems to be the best dosage for me. I take 3 mg in the morning and 3 mg in the evening. I know normal cortisone should be applied in the morning when the body's cortisole is produced. Yet it seems to help me better that way, perhaps it is a kind of replacement for anti-inflammative bacteria considering the retarding effect of that budesonide.
I don't see side effects. When I reduce budesonide, my inflammation gets worse and my health is less stable. As the budesonide only cuts down inflammation partly, I take antibiotics (cipro, Flagyl, Xifaxin) in intervals for about a week with a pause of several weeks. Trying antibiotics for 4 weeks in January ended with a fierce clostridia infection, so I always leave antibiotics off for some time.
My bone density is also lower than normal, but not yet an osteoporosis. I guess that's more a consequence of continuous inflammation and a lack of nutrients. I add vitamin D (+ K2, little magnesium, no calcium at the moment) for several years now, I need 5000 IE per day to reach a good level. My bone density has at least increased in a significant way over the last 6 years (I had 3 examinations since 2013), while it is still some way below normal.
@SteveG posted:My pouch is only 16 years old, but I have a colitis-like inflammation there and in the last part of the ileum ever since. In the earlier years I had perhaps 2 treatments with budesonide for about 8 weeks, that's the usual application.
Now I'm on Entocort for 7 years, mainly 2x3 mg per day which seems to be the best dosage for me. I take 3 mg in the morning and 3 mg in the evening. I know normal cortisone should be applied in the morning when the body's cortisole is produced. Yet it seems to help me better that way, perhaps it is a kind of replacement for anti-inflammative bacteria considering the retarding effect of that budesonide.
I don't see side effects. When I reduce budesonide, my inflammation gets worse and my health is less stable. As the budesonide only cuts down inflammation partly, I take antibiotics (cipro, Flagyl, Xifaxin) in intervals for about a week with a pause of several weeks. Trying antibiotics for 4 weeks in January ended with a fierce clostridia infection, so I always leave antibiotics off for some time.
My bone density is also lower than normal, but not yet an osteoporosis. I guess that's more a consequence of continuous inflammation and a lack of nutrients. I add vitamin D (+ K2, little magnesium, no calcium at the moment) for several years now, I need 5000 IE per day to reach a good level. My bone density has at least increased in a significant way over the last 6 years (I had 3 examinations since 2013), while it is still some way below normal.
Thank you sharing. Im glad you found a med that works for you. Is Entocort the same as budesonide?
it seems to be a bad cycle for me lately, I’m allergic to half the antibiotics that are used to treat our inflammation, the other half have caused C-Diff which in turn causes my pouchitis. The budesonide works great for my tummy but not for my bones. As I have been diagnosed with osteoporosis, I’m deathly afraid of taking those meds.
Ive been trying to ween myself off the budesonide, twice now, and both times became terribly sick. I feel like it took care of my pouchitis but making me feel worse trying to get off of it then before I started taking it, if that makes sense?
For 40yrs I’ve done very well, never had to hardly take any meds, some antibiotics here & there. But they last few years has been kicking my butt. I guess I’m getting paid back for doing so well.
The active ingredient in Entocort is budesonide. It’s generally a delayed-release (DR) or extended-release (ER) tablet/capsule, which includes the colon as a target. Some J-pouchers may not get the full dose (or if their transit time varies a lot they may get fluctuating amounts of medication). If antibiotics stopped being enough for me I’d try to transition to a biologic before settling for an oral steroid like budesonide. Budesonide is probably better than prednisone, though, in terms of systemic side effects.
@Scott F You're right, the budesonide in Entocort is meant to take effect at the end of the ileum and in the rising colon (for people with Crohn's). When I have heavy diarrhoea I can see some undigested white pellets having a swim in the toilet. Budesonide calms my inflammation (like other cortisone does, but with a mainly local effect), but sadly it does not have such a striking effect as antibiotics.
@ytcrockpot For many years I got along without meds though I always had the same kind of inflammation. I guess it is hard to get off the budesonide once you are used to it.
Are you sure that budesonide caused your osteoporosis? As I wrote I developed an osteopenia during the time without meds and I could improve that although I take budesonide for 7 years now. Have you ever checked your blood level of (25-OH-) vitamin D?
@SteveG I’ve was diagnosed with osteoporosis 4yrs ago, I just started taking Budesonide this past September. I need to get off of it, not good for my bones.