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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.

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.

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

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

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

@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.

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.

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