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MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

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brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 2074
User's local time:
2018 Jan 21 - 8:28 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Sun Dec 31, 2017 9:47 am    Post subject: Reply with quote

Hi Susanne,

Consider staying on the high dose of budesonide while you are on the cruise.

Are you cruising to sunny climates? There is nothing wrong with laying out on a chaise lounge with book in hand and water on hand and catching some rays. I've only been on a couple of cruises but I think sometimes the excursions are overrated. Consider pick one or two of the excursions that you really want to do and don't sweat it if you miss the others. I've also enjoyed walking off of the ship on my own and just walking around the port for an hour or two. Generally there are some interesting sites to see on your own just walking close to the ship.

Keep us posted on the cruise.

Brandy
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jlbattin
Rockhopper Penguin
Rockhopper Penguin


Joined: 30 Jun 2015

Posts: 613
User's local time:
2018 Jan 21 - 8:28 PM


Food Intolerances : gluten, soy, dairy, egg, green beans, olive oil, raw nuts, and probably more but I'm still discovering
Location: Colorado

PostPosted: Sun Dec 31, 2017 5:30 pm    Post subject: Reply with quote

I was diagnosed in June of 2015. I, too, had the left side pain and gurgling until I got my diet under control, but it did take a couple of months or so for it to fully subside. I got worried and they went in and did a sonogram and didn't find anything but a little bit of fatty liver, which I'm sure by now is totally under control!

It will go away when you get your diet under control and take the vitamin supplements that you need.
_________________
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Soy free, Dairy free, and Egg free since July 3rd, 2015
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suzieq
Adélie Penguin
Adélie Penguin


Joined: 19 Jun 2011

Posts: 180
User's local time:
2018 Jan 21 - 9:28 PM


Food Intolerances : gluten, egg, diary, soy
Location: North Carolina

PostPosted: Wed Jan 03, 2018 1:57 pm    Post subject: Had GI dr visit - Calling Tex & Polly Reply with quote

Hi all,

I had my Dr's visit yesterday. Per the Dr. I had been on 3mg of budesonide for almost 2 weeks, when all hell broke loose and per Tex's suggestion I upped it to 9 mg a day which helped, I went from 10-12 explosive WD a day to 1 explosive WD a day. I have been on the 9mg since 12-23. Yesterday the Dr. added Colestipol, 2 tablets - 2 x's a day and I have to call him with an update next week. Is Colestipol the same as Cholestyramine? After at least a 2 month course of Budesonide and Colestipol has done it's job, I might continue on one or the other for maintenance. The thing with the Colestipol is that I chose tablet form, I thought that it would be easier for me, especially when I travel later this month. I remember Polly mentioning powder. After seeing the size of the tablets, I'm going to request the powder when it's up for renewal. What gets me is that I mentioned bile acid diarrhea at the last appointment in October and for some reason it wasn't an option. Unfortunately I don't remember why. Maybe this hell could have been avoided.

To his credit, he grilled me on my diet and pointed out a few places where I have screwed up and also grilled me concerning Nsaids, but I only take Tylenol. I have taken the culprits out of my diet, leaving even less to eat. I found a nice tea to drink, it has peppermint, chamomile, ginger and I forget the other ingredients, it's very soothing and tasty.

I haven't taken the Colestipol yet, I'm going to start it this evening.

Any advice or suggestions would be appreciated.

Thanks,
Susanne
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31008
User's local time:
2018 Jan 21 - 8:28 PM


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: Wed Jan 03, 2018 2:55 pm    Post subject: Reply with quote

Yes, Colestipol is the generic form of the brand name product, Colestid. It's a form of cholestyramine. I've never taken it, but I understand that you may have to experiment with the dose/timing until you find the ideal amount to take, and whether or not to take it once a day, twice a day, etc. Some people seem to be helped only by the Sandoz brand. Polly will surely give you the details.

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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suzieq
Adélie Penguin
Adélie Penguin


Joined: 19 Jun 2011

Posts: 180
User's local time:
2018 Jan 21 - 9:28 PM


Food Intolerances : gluten, egg, diary, soy
Location: North Carolina

PostPosted: Fri Jan 05, 2018 12:16 pm    Post subject: Sticker shock at the Pharmacy Reply with quote

Hi all,

I filled the prescription for Colestipol and Budesonide at my Rite Aid pharmacy. This year I have a $200 deductible and I knew that. However, the tiers have changed on budesonide and instead of paying $25 for 90 pills (which I've been paying since 2015, and now have to pay 35% after the deductible which will be over $100. The Colestipol is also 35% after the deductible. The BCBS rep told me both medications are in Tier 6. Now I know why my Dr. asked if I have good prescription coverage. I will be ordering budesonide from All Day Chemist. I'm going to check out the Colestipol too.

I have 2 days dosage of Colestipol in me. This am I had a soft but formed bm for the 1st time in I don't know how long. I really don't know which medication I have to thank for it.

Thanks for listening.

Thanks,
Susanne
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31008
User's local time:
2018 Jan 21 - 8:28 PM


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: Fri Jan 05, 2018 12:44 pm    Post subject: Reply with quote

thumbs up

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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Sue777
Gentoo Penguin
Gentoo Penguin


Joined: 19 Jun 2005

Posts: 408
User's local time:
2018 Jan 21 - 10:28 PM



Location: Connecticut

PostPosted: Fri Jan 05, 2018 1:35 pm    Post subject: Reply with quote

Tagging along on this thread because I just received a call from my GI's office - he has called in a script for Cholestyramine for me which I'll pick up tonight. I requested the SANDOZ version but he said that he doesn't know which manufacturer my pharmacy uses for generics so he ordered me the non-generic instead.

I'm, of course, scared to death of potential side affects but since I'm getting it tonight I will start tonight or tomorrow while the weekend is here - better than experimenting on a work day. The good news is that this wonderful doc listens to me and gives me whatever I ask for..... priceless. He has often thanked me for teaching him things he never knew about this disease. :)
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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