I’m Back and NOT happy about it!!

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
jgivens
Gentoo Penguin
Gentoo Penguin
Posts: 315
Joined: Thu Dec 27, 2012 1:35 pm
Location: Kalamazoo, MI

I’m Back and NOT happy about it!!

Post by jgivens »

AAARRRGGGHHH! I am not happy to be here, not that I haven’t missed you all, but I was a pretty regular visitor for a year and a half while I got my diarrhea under control. And, miraculously, I DID get it under control. I switched primary care providers when the one I had told me that MC was “a one time thing” and I should be pleased that I didn’t have Crohn’s or UC (which of course I am) BUT I have lived in fear that my collagenous colitis would come back, each time I got “glutened” or had a minor flare.
I have had diarrhea as much as 8 times a day for the last 6 weeks and have really thought that I could get it under control🙄. I think that it was not triggered by anything I ate or did not eat. I think this was triggered by stress. My husband and I took a trip to Switzerland in April and had a fabulous time. I was tempted but did NOT try any bread there—-I had heard that even some Celiacs don’t have trouble with bread made by artisans in Europe because the flour there is not like the flour here. On the train from Switzerland to The Netherlands (Amsterdam) my bag with passport, driver’s license, credit cards, some jewelry, cell phone, and car key to my keyless car were stolen from me. We had to stay a day later and I had the opportunity to see how people are treated at the American consulate in Amsterdam, where I had to go for an emergency passport to get home. If you are an American, which I am, you are treated if not well, at least like you might be a worthwhile human being, but if you are someone foreign who is applying for a visa, it is unbelievable to see how poorly people are treated—less than human. I would not talk to my dog that way. Diarrhea started almost immediately upon getting back to the hotel with new passport in hand. My husband and I were worried how I would do on the flight home. The best I could do was quit eating and dehydrate myself a bit. I felt awful by the time we got home, but at least, I maintained my dignity inflight! I was home a week and had just started to replace my lost items and the diarrhea, though present, was not out of control. I had to be at a week long conference as a health educator presenting (something this introvert abhors) and though I was still suffering from anxiety and was pretty miserable, I did my thing for a week and resigned at the end so that I will NEVER have to do it again. Since then, my diarrhea has picked up speed and has made it hard to function. I have tried experimenting with various foods, but now, I think I am going to have to get serious and really go back to 2012 and have only a few basic foods—chicken broth and some rice. In 2012 the gastroenterologist I saw was wonderful. I never really had to go on any medication except for Pepto Bismol for a couple of weeks and totally get rid (with the help of Enterolab testing)of eggs, oats, gluten, soy, tree nuts, and really limit any sugar intake. I really felt fortunate. Since then, Dr. Crane has retired.😢. I called on Thursday and explained my dilemma to a nurse there and I have an appointment June 28. The doctor I will see, prescribed budesonide until I can get in to see him. I have never done well with prednisone, so am hoping that the pharmacist and the nurse are correct—that this is less likely to cause the depression prednisone does for me. I’m hoping this works and that I can wean myself off without it coming back over time. Ugh! I am sorry to whine; I should be grateful for the 6 good years I have had. I am also going to start back doing mindfulness meditation so that I can get my stress under control
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Jane,

I'm sorry to hear that your trip turned into such a stressful event. I believe that you are correct — stress is the ultimate trigger for MC. Unfortunately, our experience has been that we have to go back to square one when trying to turn around a major flare. We usually find it necessary to adopt the practices that brought remission initially. And the stress has to be controlled.

I wish you the best of luck in your endeavor to regain your health.

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.
jgivens
Gentoo Penguin
Gentoo Penguin
Posts: 315
Joined: Thu Dec 27, 2012 1:35 pm
Location: Kalamazoo, MI

Post by jgivens »

Thanks, Tex. I suppose that it is probably not a coincidence that my dry eye and eczema in ears and on eyelids is also in full roar. I see the dermatologist this week. She, my primary care doctor, and my ophthalmologist have long thought that my skin and eye problems are directly correlated with my gut problems. I’m grateful for a good bunch of specialists.

Jane
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
User avatar
carolm
Rockhopper Penguin
Rockhopper Penguin
Posts: 1346
Joined: Fri Sep 02, 2011 7:27 pm
Location: Kansas City

Post by carolm »

Hi Jane,
I’m sorry you are going through this. I’ve taken both Prednisone and Budesonide and I do think Budesonide was much easier on the body. I wasn’t jittery and found it relatively easy to titrate off of.

I have found that while I can deal with some stressors, grief and loss will always prompt a flare, no matter what I do.

I’m also studying and practicing mindfulness (meditation and living with awareness and clarity) and I also find it helpful. I do think some short-term flares have been made even shorter- like instead of feeling rough for 2 days, I have symptoms for 1/2 day. And even armed with that knowledge, grief and loss will show up and .. boom!... here’s the flare and I can’t seem to shorten those.

All this to say I have an idea of what you are talking about and I truly hope your flare will soon resolve.

Best wishes-
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Marcia K
Rockhopper Penguin
Rockhopper Penguin
Posts: 1397
Joined: Thu Apr 03, 2014 10:39 am
Location: PA

Post by Marcia K »

Hi, Jane. I'm sorry your symptoms have returned and I wish you the best on getting back on track. When I am stressed about something I immediately feel it in my gut so I, too know what you're talking about.
Marcia
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
User avatar
Erica P-G
Rockhopper Penguin
Rockhopper Penguin
Posts: 1815
Joined: Sun Mar 08, 2015 2:06 pm
Location: WA State

Post by Erica P-G »

HI Jane,

What a bunch of unfortunate events to have happen in your life all at once. I sure hope the whole Switzerland trip was well traveled and enjoyed for the most part. I would agree that the violation of having my belongings taken from me would spark the utmost flare in my body too.

I am right along with you in that having to present myself in front of people would just exacerbate my already stressed body....I sure hope you can find peace and serenity in the days to come and that your flare follows suit as well. If you are having to deal with histamine, or heat then your body may just be taking on too much to get under control as soon as you'd like it to after all the cortisone/adrenaline flowing systemically.

Hang in there.....I hope you feel better soon.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Post Reply

Return to “Main Message Board”