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The Grinch has stolen my Christmas
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suzieq
Adélie Penguin
Adélie Penguin


Joined: 19 Jun 2011

Posts: 180
User's local time:
2018 Jan 21 - 9:59 AM


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

PostPosted: Sat Dec 23, 2017 8:32 am    Post subject: The Grinch has stolen my Christmas Reply with quote

Hi All,

A quick update. I had a flare that started in the beginning of August. I took 9 mg of budesonide until the beginning of October. I saw my GI Dr and he had me reduce to 1 mg every other day for a month to taper off. I took the last pill November 8. A few weeks later I had a little diarrhea every so often. We went to NJ the week after Thanksgiving and that is when the diarrhea got more frequent and then I was in a full flare. So, I never reached remission with that course of budesonide. My instructions from my Dr. are to call in when I have a flare. He started me on 1 3mg budesonide a day and told me to follow the fodmap diet. I know 1 3mg of budesonide at this stage does nothing. It's almost 2 weeks and I have never had this amount of diarrhea before, over 10 x's a day and a annoying discomfort on my left side, mid waist. The thing is I had an eye dr appointment and I took Imodium so I could make it to the appointment. Up until taking the Imodium my diarrhea was maybe 3 x's a day, now it's out of control. I haven't left the house in days and haven't had a good nights sleep either. I go back to see the GI Dr on January 2nd. The kicker is I'm going on a cruise the end of January, I hope I'm somewhat better by then. The cruise line already has my diet restrictions. When away, I used to control the diarrhea with Imodium and could have a somewhat "normal" day. After what happened this last time, I'm afraid to take it.

My daughter is visiting for Christmas, I can't leave the house. She will be making the food, I'm just not up to it. Bah humbug!!!!!!!!!

Any suggestions?

Thanks,

Susanne
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31005
User's local time:
2018 Jan 21 - 8:59 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: Sat Dec 23, 2017 10:35 am    Post subject: Reply with quote

Hi Susanne,

Sorry this has happened. Your doc doesn't seem to be much help. You're right — when we're in a flare/relapse, 3 mg of budesonide is not going to be effective. Especially when the stress of traveling is fast approaching.

Are you aware that you can buy a generic form of budesonide from the overseas pharmacy listed below for pennies on the dollar, compared to domestic pricing? A 1-month supply (90 capsules) costs less than $50 plus shipping. No prescription is needed (prescriptions are not valid across international borders, anyway). This is what other members use when they don't have insurance or otherwise can't afford the US prices. You can also get this exact same product from some Canadian pharmacies, but they mark up the price 40 % and require a prescription. No one has complained about the service or the products from this pharmacy:

https://www.alldaychemist.com/budez-cr.html

Delivery takes about 2 weeks, I believe, but it might take longer during the holidays, because it has to go through Customs. So if you're going to order, you would need to do so very soon in order to get it in time for the trip.

I hope that this brightens your Christmas.

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 - 9:59 AM


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

PostPosted: Sat Dec 23, 2017 11:30 am    Post subject: Reply with quote

Hi Tex,

Thank you for the information for getting budesonide. You don't need a prescription? I have 2 more years left on healthcare.gov. Right now I have a $200 deductible on prescriptions but I can get 90 budesonide pills for $25 after the deductible. This information is good for when I'm on Medicare. I do have enough budesonide in the bottle to take the 9 mg a day until I see the Dr. next week, in fact it could get me through the end of January. I try to follow Drs. orders but after 2 weeks and it's not working and it's gotten worse and with the holidays, like I'm really going to be able to get in touch with him or his office? I had it in my head after all the diarrhea last night and this am to start the 9 mg. Did I ever mention that the Dr called collagenous colitis a benign, nuisance disease? I got annoyed with him and told him how it changes your life forever.

In my recent traveling history it is a fact that I don't travel well, that I know, I always have a problem. Keeping my fingers crossed. The cruise line had me fill out dietary request form. I was told that as long as I eat in one of their dining rooms, they would have a meal suited for me. I was told if I went to the buffet, "your on your own".

Thanks again. Have a happy and healthy holiday!

Susanne
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31005
User's local time:
2018 Jan 21 - 8:59 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: Sat Dec 23, 2017 12:14 pm    Post subject: Reply with quote

You wouldn't need a prescription at the pharmacy at the link, but you would at a Canadian Pharmacy.

Your food on the cruise shouldn't be a problem. The cruise lines are very good about taking care of special diet requirements. They have excellent chefs. If you advised them of your needs, you should be able to relax and enjoy good, safe meals every time.

Collagenous colitis is a benign, nuisance disease — unless your doctor happens to have it. Then it becomes a hellacious, overwhelming nightmare. Laughing

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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barbieAnn
Little Blue Penguin
Little Blue Penguin
United States

Joined: 24 Nov 2017
Posts: 41
User's local time:
2018 Jan 21 - 9:59 AM




PostPosted: Sun Dec 24, 2017 7:25 am    Post subject: Reply with quote

Hello Susanne,

I can feel your pain! I am not looking forward to the holiday as well. I just feel so sick all of the time.

I get the same left sided pain you referred to in your post. Some days it is worse than others.

If there is one thing that I have learned from all of this is that these doctors are of no help. I am actually on my fourth gastro doc who I have my first appointment with in January. I still try to have hope that there will be one doc out there who understands the situation a little bit better but it doesn't look good! It is very scary that they don't understand the severity of it and they are doctors. My current doc sees all the weight that I lost and attributes it to "depression". It can't possibly be the colitis or having bowel movements of a volume that only an ox could produce!

Try to have a nice holiday and hopefully you will have some relaxation on your cruise.

Barbara
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suzieq
Adélie Penguin
Adélie Penguin


Joined: 19 Jun 2011

Posts: 180
User's local time:
2018 Jan 21 - 9:59 AM


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

PostPosted: Sun Dec 24, 2017 11:46 am    Post subject: Reply with quote

Hi Barbara,

Thank you for your post. I am on my 2nd Dr., the one I had in NJ and the one I found down here in NC. Unfortunately, I am on Obamacare and all but 1 insurance provider has pulled out of the state. The plan I'm on does not have many choices for GI drs that are local to me. I can't afford to go out of network. This GI dr has accepted the results of Enterolab and seemed to be up to date on microscopic colitis. I see him next week and I will tell him that I started taking the 9 mgs of budesonide. My Dr. knows that I struggle with stress but I never opened up to him that I also deal with depression. I like what Tex said "Collagenous colitis is a benign, nuisance disease — unless your doctor happens to have it. Then it becomes a hellacious, overwhelming nightmare." I would love to see them deal with it.

Meanwhile, I can't eat the traditional Christmas Eve and Christmas day foods that my family has requested, so I will make something else for myself. I'm still not able to leave the house today, so close to the toilet I will stay. My daughter will have to make the egg casserole because it contains bread. I thought of making it with gluten free bread but I can't eat it anyway. Anyway, one less chore for me!

The left side pain has subsided somewhat, that is where a lot of the gurgling noises are coming from. I have lost a little weight, some from the diarrhea and some for hardly eating anything.

I hope you have a wonderful holiday and that the 4th Dr will be better than 3 previous ones.

Happy Holidays,
Susanne
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suzieq
Adélie Penguin
Adélie Penguin


Joined: 19 Jun 2011

Posts: 180
User's local time:
2018 Jan 21 - 9:59 AM


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

PostPosted: Thu Dec 28, 2017 12:28 pm    Post subject: An update and a question Reply with quote

Hi all,

I hope everyone had a wonderful holiday.

So, I've been taking the 9 mg of budesonide since 12-23 and have been eating very plain food and not much of it. I see great improvement and today no WD, at least not yet. I feel better and feel like I finally see light at the end of the tunnel. So it was almost 2 weeks on the 1 - 3mg budesonide a day and 6 days on 9 mg. a day. I see the GI dr. on Tuesday, I expect more of the same from him. I feel that he placed me on 1-3mg a day because of my osteoporosis.

At a friend's suggestion, I've done some reading on medical marijuana and I wondered if anyone on this site has tried medical marijuana for MC? MC is a Irritable bowel disease, isn't it? It seems like it would help in an active flare. Unfortunately there is no medical marijuana law in NC. Just wondering, any thoughts?

Thanks,
Susanne
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31005
User's local time:
2018 Jan 21 - 8:59 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 Dec 28, 2017 2:07 pm    Post subject: Reply with quote

Hi Susanne,

If your GI doctor threatens to cut off the budesonide recommendation you might point out to him that osteoporosis is primarily a symptom of gluten sensitivity and a GF diet preempts that threat. Also, there is published research showing that long term use of 4.5 mg of budesonide carries little risk. But he may be aware of this research.

Quote:
Conclusions Budesonide at a mean dose of 4.5 mg/day maintained clinical remission for at least 1 year in the majority of patients with collagenous colitis and preserved health-related quality of life without safety concerns. Treatment extension with low-dose budesonide beyond 1 year may be beneficial given the high relapse rate after budesonide discontinuation.


http://gut.bmj.com/content/early/2014/11/25/gutjnl-2014-308363

You may need to stay on a very low dose of budesonide indefinitely in order to maintain long-tern remission. But remember, it almost always takes a full dose to get someone out of a flare.

I'm aware of some members who are trying marijuana for MC, but so far at least, none of them have reported any success. But then, maybe they're too mellow to bother writing to me any more. Laughing

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 - 9:59 AM


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

PostPosted: Thu Dec 28, 2017 3:47 pm    Post subject: Reply with quote

Hi Tex,

Thank you for that information on budesonide. I can go prepared to my appointment on Tuesday. I meant to ask you about the probiotic the Dr has me taking, VSL #3. I don't know if it's helping or not or hurting or not. It's casein free, soy free, gluten free. I also stopped taking the magnesium supplement with this flare. It's only 100 mg of magnesium, I was just real desperate to have the WD go away.

LOL!! I'm going to ask the Dr. his opinion about medical marijuana even though it's not available here. My daughter, who has a heart of gold when it comes to me, suggested it. She had me read up on it. She's more hip than I ever was or will be. It would also help the osteoarthritis in my thumbs.

Thanks again,
Susanne
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31005
User's local time:
2018 Jan 21 - 8:59 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 Dec 28, 2017 6:39 pm    Post subject: Reply with quote

The VSL #3 is one of the better probiotics (and one of the pricier ones). Probiotics do not help most of us, especially when we are in a flare, but a few people claim that it works for them. Probiotics make some of us much worse, but you would surely have noticed if that applies to you.

About a year ago the American Gastroenterological Association Institute reversed their position and now they recommend against the use 0f probiotics for the medical management of microscopic colitis.

http://www.gastrojournal.org/article/S0016-5085(15)01625-X/pdf

My browser doesn't show this link properly (completely highlighted). It's a link to a PDF file, so you may have to copy it and paste it into your browser to get it to download the PDF properly.

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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brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 2074
User's local time:
2018 Jan 21 - 8:59 AM


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

PostPosted: Fri Dec 29, 2017 6:08 am    Post subject: Reply with quote

Quote:
I also stopped taking the magnesium supplement with this flare. It's only 100 mg of magnesium, I was just real desperate to have the WD go away.


Good move. I had to eliminate oral magnesium last summer to get out of a flare.
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Jeanemcl
Adélie Penguin
Adélie Penguin


Joined: 27 Sep 2013

Posts: 203
User's local time:
2018 Jan 21 - 9:59 AM


Food Intolerances : Gluten, soy, milk,
Location: Ft. Myers, Fl.

PostPosted: Fri Dec 29, 2017 4:56 pm    Post subject: Reply with quote

Following this closely. I too have discomfort on left side and lots of gurgling. I had my last herceptin treatment for Her2positive breast cancer so I am hoping my gut will settle now. I started the Budesonide again and 9mg helps. I ordered some from Canada which I am waiting for.....$250. That is cheaper than I can get it here in the states. Tex I believe in the summer I called allday chemist and they said they didn’t stock it anymore but I will sure try again....If I have to be on this routinely I need to find a more reasonable price. It may be my imagination, but I think komucha makes me feel better....It could be the ginger as that is the kind I buy.
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Everything will be ok in the end, if it's not ok, it's not the end.
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Jeanemcl
Adélie Penguin
Adélie Penguin


Joined: 27 Sep 2013

Posts: 203
User's local time:
2018 Jan 21 - 9:59 AM


Food Intolerances : Gluten, soy, milk,
Location: Ft. Myers, Fl.

PostPosted: Sat Dec 30, 2017 10:32 am    Post subject: Reply with quote

I called alldaychemist and they do carry the generic Budesonide!! Maybe they were just out for the day or something this summer or I talked to someone who did not know his/her stuff. The guy today told me it was for asthma...he did not know anything about MC.....but he did say it was a generic of endocort and it was in capsule form. I shall try this next time. What a wonderful thing it would be to cut cost from $250 to $50!
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Everything will be ok in the end, if it's not ok, it's not the end.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31005
User's local time:
2018 Jan 21 - 8:59 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: Sat Dec 30, 2017 1:17 pm    Post subject: Reply with quote

Jeane,

Their generic form of budesonide is called Budez CR 3 mg, I believe.

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 - 9:59 AM


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

PostPosted: Sun Dec 31, 2017 8:43 am    Post subject: Reply with quote

Hi all,

I came to post an update and read of few posts before I logged on. I'm still on 9 mg of budesonide a day. I don't have the pain mid waist on the left side anymore but I do have very active intestines. I'm down to 1 WD, very foamy, in the am, but the episode wipes me out and the intestines just aren't happy. I see the GI on Tuesday, he doesn't know I increased dosage myself.

This has been by far the worst flare that I have had since being diagnosed. I have had so many flares this year and it seems like I can't make plans of any kind, I always have a problem. I feel like a recluse because I don't stray far from the bathroom. One of the posts I read was about stress. I am always stressed, I have a dysfunctional family life and I'm just not happy, I definitely have depression. I'm a Jersey girl who just really hates it here in NC. I haven't been to the gym because I just don't feel good. I hope to start going to the gym or just take a short walk soon. I have to work on myself, mediation or yoga or something like that. I'm also stressed out about this cruise I'm supposed to go on in 3 weeks, I picture myself in the stateroom by the bathroom while my husband and friends go on the excursions. Hopefully the budesonide will kick in soon!

We have a informal wedding to go to next weekend. I already told my husband that I will not eat the food, I'll eat something before we leave the house. My extended family tries to accomodate my GF, CF, DF, SF needs but doesn't understand why what they have prepared is probably contaminated for me.

Other than this cruise, I will not be traveling back to NJ this year as much as I have been. I just don't travel well.

Thank you all for letting me vent a little.

I wish all of the Potty People a healthy and happy new year.

Thanks,
Susanne
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