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Tapering off Budesonide after rectal prolapse surgery

 
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wnorm
Little Blue Penguin
Little Blue Penguin
United States

Joined: 01 Jul 2011

Posts: 34
User's local time:
2017 Nov 21 - 4:17 AM


Food Intolerances : lactose, sorbital, fructose?,allergic to :nuts, all seeds, tomatoes, eggplant, all pepper, nutmeg, most raw fruit, many cooked fruits, peanuts, chestnuts, etc.

PostPosted: Thu Sep 22, 2016 8:52 am    Post subject: Tapering off Budesonide after rectal prolapse surgery Reply with quote

I am 63 and have collagenous colitis, mastocytic enterocolitis, and numerous food allergies and intolerances.
In May/2015 I had a perianal rectal prolapse surgery. My rectum was removed and part of my colon was used to create a new rectum. Since then I was advised to do a 1.5 litre water enema daily. Bowel function was erratic at best. Prior to that surgery I had long term diarrhea. Afterwards I had chronic constipation alternating with severe diarrhea. I am intolerant to most laxatives and stool softeners. High fibre foods made me ill. I used to take Pentasa and Salofalk enemas, but in the last few months have become intolerant to them.
The prolapse recurred, and was even more painful and larger than prior to the 2015 surgery.
I had a 2 1/2 hour laparoscopic abdominal rectal prolapse surgery (no resection) 9 days ago. I had g.a. and took 5 mg morphine tabs every 4 or so hours +tylenol +advil for about 2 1/2 days post surgery as prescribed. I was released ~ about 7 hours after surgery.

I am having major issues with bowel function now. Laxaday has not been with severe constipation. I was getting more and more dizzy and nauseous with each passing day after the surgery. I suspect that I may have developed an intolerance to the polyethylene glycol.
I have been taking Budesonide since early July/2016 to help with the pain and inflammation in my colon and rectum. The regimen is as follows:6 mg/day for one month and then 3mg/day until February 2017. I suspect that the Budesonide may be contributing to the constipation.
I also take:
Nalcrom (gastrocrom in the US) 100mg -2 caps, 4 times daily
Zaditen (ketotifen fumarate) 1 mg tab- 3 tabs at bedtime
Aerius 5 mg tab-1 tab 3x/day
10,000 u VIT D/week as recommended, calcium , magnesium,
Ritalin for excessive daytime sleepiness

I would like to taper off the Budesonide. What exact protocol do you recommend? If I taper to 1 tab every second day, and so on, how many days should I maintain the schedule? I checked the section in your book, but I still would like you to clarify the regimen.
Should I decrease the Nalcrom, Zaditen , and Aeries as well.I am very careful with my diet. Some of the main symptoms being controlled previously were : overall body itch,
abdominal cramping, and diarrhea. Since the diarrhea is absent now, perhaps I should modify the regimen.

I know that I still need to heal from the surgery, G.A. and morphine. However, I would like to regulate my bowels so I can rejoin the world. I suspect that years of diarrhea and one year of water enemas may have permanently damaged my colon. I don't want to do any more water enemas. You have been very helpful in the past. Thank-you.Any suggestions would be greatly appreciated.
_________________
allergic to :nuts, all seeds, tomatoes, eggplant, all pepper, nutmeg, most raw fruit, many cooked fruits, peanuts, chestnuts, etc.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30717
User's local time:
2017 Nov 21 - 4:17 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 22, 2016 10:08 am    Post subject: Reply with quote

Hi,

I'm sorry that you're having to continue to deal with so many issues. Regarding preventing a rebound effect (from mast cells) when a budesonide treatment is ended, most members here find that the slower the dose is tapered, the better the chances of success (preventing a relapse). After reaching the 3 mg (1 capsule) per day level, many members stay at each level for 2 weeks (or more) before dropping to the next level (that is, 1 per day, 1 every other day, 1 every third day, 1 every fourth day, etc.). Some stop after the 1 every third or fourth day level, and some go on to 1 every fifth or sixth day.

Mast call (histamine) issues are a problem for many of us (including me), and they're obviously a major problem for ME patients. Many of us take an OTC antihistamine daily, especially during pollen season. Some of us have to take more than one in order to get relief. Allergists prescribe up to 4 times the labeled dose of OTC antihistamines for chronic urticaria cases, so it's generally safe to increase the dose if needed. Based on that, and the fact that so many of us here (including me) take a daily antihistamine in order to keep our (MC and allergy) symptoms under control, I don't see any reason why you would need to lower your dose of Nalcrom, Zaditen, or Aeries.

In fact, we have found that in some cases, antihistamines can help to control diarrhea almost as well as budesonide, with fewer side effects. Of course if you feel that you could get by just as well on a lower dose of any of those medications then it's always a good idea to not use any more of any medication than is necessary to get the job done. But my point is, antihistamines usually help to control MC (and of course ME) symptoms. Only rarely do they make symptoms worse. The most common adverse effect caused by antihistamines reported by members here is minor bloating.

Please be aware that virtually all food sensitivities are caused by gluten sensitivity. Gluten sensitivity is the mechanism that initially causes the increased intestinal permeability that leads to the development of other food sensitivities. Despite negative celiac test results, virtually everyone here is very sensitive to gluten. A few of us are undiagnosed celiacs (due to the poor sensitivity of the celiac tests), but most of us have non-celiac gluten sensitivity. The medical community has no test available for detecting non-celiac gluten sensitivity, so we are on our own and cannot rely on our doctors for determining gluten sensitivity.

I wish you the best of luck in your recovery, and I hope that some of this is helpful.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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wnorm
Little Blue Penguin
Little Blue Penguin
United States

Joined: 01 Jul 2011

Posts: 34
User's local time:
2017 Nov 21 - 4:17 AM


Food Intolerances : lactose, sorbital, fructose?,allergic to :nuts, all seeds, tomatoes, eggplant, all pepper, nutmeg, most raw fruit, many cooked fruits, peanuts, chestnuts, etc.

PostPosted: Thu Sep 22, 2016 11:48 am    Post subject: Tapering off budesonide after rectal prolapse surgery Reply with quote

Thank-you so much. I really appreciate your response. I find you more helpful than my colorectal surgeon and gastroenterologist combined.
Your recommendations on meds are logical. Thanks again
_________________
allergic to :nuts, all seeds, tomatoes, eggplant, all pepper, nutmeg, most raw fruit, many cooked fruits, peanuts, chestnuts, etc.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7216
User's local time:
2017 Nov 21 - 8:17 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Sep 22, 2016 2:23 pm    Post subject: Reply with quote

HI there
sorry you are having these issues...
one thing I found after some surgery in 2011 is that anesthetic triggered major major mast cell /histamine issues

what i have learnt since is that anesthetic also affects methylation cycle and can deplete B12 and B6, - the key part of this is that B6 is essential for balancing histamine levels in the body.

you mention that you are taking calcium and magnesium - how much elemental magnesium are you taking?
to help with the constipation I recommend the following (I have experience more C and D in my MC journey)

- increase water intake
- take spoonfuls of coconut oil morning and night
- increasing oral magnesium intake to at least 600mg Elemental magnesium per day (and highly recommend good quality magnesium to optimise absorption)
spread the dose out during the day and using topical magnesium lotion and spray is also beneficial
- taper off the budenside
- stick with bland low inflammation healing plan, lots of soups and stews (well cooked proteins and 2-3 safe vegetables) ideally made on on home made bone broth - this is help to reduce inflammation, cramping, and be easier for the body to digest (avoid all known triggers and gluten, dairy, soy, eggs, processed flours etc)

In regards to other changes, dont make too many changes at once, your body is fragile and wont handle multiple changes. my suggestion is;
firstly - increase magnesium and do other suggestions to help constipation - be patient it can take a few days to see benefits from this
once you are less constipated and feeling better for a few weeks then look at reviewing the medications etc.

when the constipation issues reduce, dont stop the high dose magnesium, coconut oil etc, you can reduce them a bit, but dont stop, as the constipation may return.

second step - would be start active B6 to help with mast cell/histamine issues.

hope this helps..
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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wnorm
Little Blue Penguin
Little Blue Penguin
United States

Joined: 01 Jul 2011

Posts: 34
User's local time:
2017 Nov 21 - 4:17 AM


Food Intolerances : lactose, sorbital, fructose?,allergic to :nuts, all seeds, tomatoes, eggplant, all pepper, nutmeg, most raw fruit, many cooked fruits, peanuts, chestnuts, etc.

PostPosted: Thu Sep 22, 2016 2:52 pm    Post subject: Tapering off Budesonide after rectal prolapse surgery Reply with quote

Thank-you . Your response is very helpful.I guess I should be patient as you advised. Best wishes
_________________
allergic to :nuts, all seeds, tomatoes, eggplant, all pepper, nutmeg, most raw fruit, many cooked fruits, peanuts, chestnuts, etc.
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7216
User's local time:
2017 Nov 21 - 8:17 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Sep 22, 2016 3:20 pm    Post subject: Reply with quote

patience is part of it, the body takes time to heal, albeit to heal the body needs the right elements, so it is finding the right combo of both..

happy healing
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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