I wish I had worn a daiper.....

This is a life-altering, frustrating, disgusting, and humbling disease, but if nothing else, it teaches humility.

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CNewman
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Joined: Thu Mar 08, 2012 3:53 pm

Post by CNewman »

I already shared this on the main discussion page- so hat the heck. I have only been diagnosed as CC for 4 months, and have had my share of awful moments. Like the time I had the flu and I threw up and had D all over myself at the same time. My son came to see why I was in the bathroom so long, and I saw I had an accident and looked at me like I was an alien.

There is the family dinner my husband cooked for my FIL, where I was getting up after every BITE of food, and RUNNING up the stairs. I had to change clothes 3x that night.

But my all time favorite so far- beat this- is my husband and I were having sex two weeks ago, and everything as fine, and all of a sudden there was this smell. I moved a little, and sure enough, I had had an accident. I was MORTIFIED. I still am a bit. I have been terrified to have sex again- not that I wasn't before- but before it was just because I felt disgusting, freakish and horribly unattractive because of this disease.
Of course, my husband doesn't care. He humors me and listens when I have to talk about it, and I make jokes, because that is how I cope. He swears up and down that I am no less attractive now, than the day we met, and he doesn't care at all about my bed accident.
He makes sure I am ok when we are out- making sure we don't stray too far away from home, or making sure the restaurant we are at understands my restrictions. I don't know what I would do without him.

But I have to say- all this talk about Depends and all of that is a bit depressing. I am only 32 years old. I really don't want to be back in diapers so soon!!! :oops:
Bonnie
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Joined: Fri Sep 14, 2012 4:51 pm

Post by Bonnie »

I have to say, never thought I could laugh about this horrible disease, but, all of these posts had me laughing! I can honestly say, I have probably been there, done that, on each and everyone of your posts. I thought I was the only person in this whole world who had a problem like you all have. You're right, when the "D" hits, it doesn't care when or where. I have had so many occasions when I have had to stay home because I knew it was coming, just didn't know when for sure. Thank you all for posting, and, helping me to realize I'm not the only one with this situation.
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tex
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Post by tex »

Hi Bonnie,

Welcome to our internet family. Yep, everyone here understands what it's like to have to live with this disease — we've been there, done that. If only our doctors understood what it's like.

Again, welcome aboard, and please feel free to ask anything.

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.
Bonnie
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Joined: Fri Sep 14, 2012 4:51 pm

Post by Bonnie »

Being new to this site, I have so many questions that I don't even know where to begin. I was diagnosed with collagenous colitis almost 5 years ago! At the time of my diagnosis, I was told by my Gastroenterologist that my disease is rare, there are no known cures, go home and live with it. I have been literally "dealing" with this by myself all of this time. I just happened upon this web site, so glad I found all of you. I'm going to start doing some serious reading and see if I can get some answers. I am just so tired of this disease ruling my whole life! If I go somewhere, I literally stop eating and drinking hours before, and, never ever eat while I am out of my home. How horrid is this? Last year I was diagnosed with hypothyroidism. I feel like my autoimmune system has deserted me. After reading all of your posts, I am hoping I can half way get my life back on track.
BB
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tex
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Post by tex »

Bonnie,

Your gastroenterologist was/is typical of many who simply have never bothered to learn how to treat this disease, because they mistakenly believe that it's a rare disease. It's not. It's actually more common than Crohn's disease, ulcerative colitis, and celiac disease, but it typically gets very poor support from the medical community or any of the national and international inflammatory bowel disease support organizations. It seems that no one wants to even discuss it, because they don't understand it.

If you read here, and ask questions, and you are willing to make the diet changes that are necessary to stop the inflammation from being generated, I can almost guarantee that you can get your life back. The journey back to health is not easy, and it takes a while, but being able to control the disease instead of bring controlled by it, certainly makes it all worth while.

And while it's true that there's no cure for CC, the symptoms can certainly be controlled. Doctors who tell their patients to "go home and live with it" should be "blessed" with the disease themselves They deserve to have to live with it — we don't.

You may just need to fine tune your diet some more, or you might be taking a medication that causes the disease — quite a few drugs are known to trigger CC/LC/MC. Also, there are a number of foods that we have to avoid while we are recovering, because they irritate the gut when it is already hyper-inflamed. And yes, we are approximately 7 times as likely as someone in the general population to develop thyroid issues. The good news is that if we control our symptoms, we can prevent the future development of additional autoimmune diseases.

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.
ant
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Post by ant »

Dear Bonnie,

Welcome! You have found the best (possible the only) place where you can find out the truth about MC and work out a path to remission.

Best wishes, ant
----------------------------------------
"Softly, softly catchee monkey".....
Chocolate Rose
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Post by Chocolate Rose »

Oh, my gosh! I have experienced so much of what you all have experienced - leaving underwear behind, running to the bathroom only to get there not quite in time, having to change clothes multiple times, fear of leaving the house, unwilling/unable to go anywhere if you don't know where every bathroom is located and that it is close by, being caught totally off guard and not even knowing that an "event" occurred or was occurring right then and there without any warning, spending waaaaayyy too much time in the toilet stall, etc. I really thought I was the only one. There have been times when I would be driving and looking out the window trying to imagine if there would be anywhere alongside the road that I could just pull over and go into the bushes if I needed to (kind of planning ahead) - and some of you have had to do that! So, now I know I can do it, too, if I have to. I have sat in poo in my car driving home from a store from which things "moved" so quickly that I couldn't get to the bathroom and just had to leave. I spent Christmas morning in a family members bathroom cleaning myself up and changing clothes (luckily I had brought a change of clothes) because of one of those incidents that happens without any warning at all. I had to leave the bathroom to go grab my extra clothes hoping no one would smell me or go into the bathroom before I could get back in.
A couple of weeks ago, I had to go to a training for work in another city. It meant a carpool ride and a ferry ride, and having to go to the front of the room to get a pass to leave the room (security) to be able to go to the bathroom. I was terrified I would have an event. So, I started looking into adult pullups. I ended up ordering Prevail Protective Underwear from Amazon. I ordered this brand because one of the first reviews mentioned that it had worked for them for bowel issues. I ordered them from Amazon because I was concerned a co-worker might see me purchasing them locally. Normally, I wear long, thick feminine pads every single day of my life. At work, I keep an extra one in my pocket and extras in my purse. When I have an "event", I throw the original pad away and replace it with the one in my pocket because there have been many times I have not even been able to get back to my desk before a second "event" occurs and I don't make it back to the bathroom, either. There have also been times I've had to throw my undies out and replace with extras I keep in my desk. OK, back to my original story - When I received my package, I tried them on and they fit fine. To me, they didn't seem noticeable under my clothes (and no one else the day of the training seemed to notice - someone in my group would have said something if they did). I ordered a size smaller than I normally would have in the hopes that it would contain any mess. I made sure that I could tear them apart at the sides so that I could get them off with less mess. They didn't make that papery noise when I walked. I packed a pack with extra clothes and extra pullup things. When I got to the meeting place, my boss asked if I was planning on spending the night, but I just made a joke. Ha Ha (but not really). Coincidentally, I'd discovered a few weeks beforehand that if I had a small amount of flaxseed, I could temporarily plug myself up. I'd only tried it twice before, so I didn't know how reliable it would be. So, the night before the training, I had a little bit of flax. I made it through the day with my diaper on, going out for lunch (which normally is a no-no for me), with only one bathroom incident that was totally controllable (SURPRISE! thanks to the flax). The good news was that I didn't humiliate myself and got through the day. The bad news is that I can't give any info on how well my diaper would have worked. The other good/bad news is that these diapers are purchased in 4 packs of 20 each, so I have a LOT of them. :mwahaha:
Fritcher
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Location: Canon City, Colorado

Post by Fritcher »

Stanz wrote:Oh, the stories we all have of this.......I could go on for hours in my occupation where I often had/have NO bathroom available other than a porta-potty waaay far away or a bathroom inside a house when I'm in the garage and can't enter the house cause they're rolling sound inside. We have no dignity, we are the bottom feeders - so who are our bottoms feeding, anyway?
Hello Stanz;
I saw your post about worst accidents and you stated that you resolved your issues successfully w/L- Glutamine,
Probotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Plese explain all the abrieviations and tell me more about the vitamins, Glutamine.
I just joined the form yesterday and so far I do not undedrstand the abrieviations.
Thank you in advance,

Gene
If you think you can or think you cant you are right
Fritcher
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Location: Canon City, Colorado

Post by Fritcher »

Stanz wrote:Oh, the stories we all have of this.......I could go on for hours in my occupation where I often had/have NO bathroom available other than a porta-potty waaay far away or a bathroom inside a house when I'm in the garage and can't enter the house cause they're rolling sound inside. We have no dignity, we are the bottom feeders - so who are our bottoms feeding, anyway?
Hello Stanz;
I saw your post about worst accidents and you stated that you resolved your issues successfully w/L- Glutamine,
Probotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Plese explain all the abrieviations and tell me more about the vitamins, Glutamine.
I just joined the form yesterday and so far I do not undedrstand the abrieviations.
Thank you in advance,

Gene
If you think you can or think you cant you are right
Stanz
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Post by Stanz »

Welcome to the Forum, Gene,

I've had little time to be here for months now, but wanted to respond and am copying over what I posted here in Dec. of '09. You have found a great place to research and learn about this.

My protocol: (as of 12/'09) and that's been nearly 4 years ago now, Gene, but this is where I began.

2 rounded Tsp. Glutamine Powder - 3 times a day (Vital Nutrients)
2 PB 8 Pro-Biotic Acidophilus (Nutrition Now)
2 Loperamide Hydrochloride – 2 mg. /3 times a day (Kirkland Brand)
1 Proboulardi 2 times a day (Metagenics)
2 Vitamin D3 (2000 I.U.)
1 Tbsp. Organic Coconut Oil (Aunt Patty’s)

I take the first round of those when I first get up and follow it with this:

Banana smoothie:
1 RIPE Banana
3 Tbsp. Almond butter
1/2 C. Green Juice (Odwalla)

I’ve been gluten free since early August. Have been soy and (mostly) dairy free since I was diagnosed with both LC and CC in mid October (via colonoscopy/biopsy) and have been on this protocol for about 5 weeks now. I’ll probably stay on it until the first of the year and may add or delete stuff depending on the results from Enterolab. I’m actually feeling pretty good and am hopeful, which is HUGE.

I also did a lot of research on adding Low Dose Naltrexone to this regimen and my Naturopath considered prescribing that as well. I’ve been expecting to have to leave town on short notice for about a month now and will be gone for quite awhile once I leave, so he was hesitant to add it w/o being able to monitor me.

For the past week I have had NO D. I have 1-2 BM’s a day now (used to have probably 12 , even though I was eating almost nothing) and they are what I would consider to be pretty normally formed. I’ve gained about 4 pounds in the last month, am actually beginning to have an appetite again and not as afraid to eat or go out.

----------------------------------------------

All of this was written in late '09, my stressors have changed, my life has changed, since then, but when I wrote this here I was in yet another stressful moment in my life, in LA awaiting the birth of my 3rd grandchild, who is now almost 4. My daughter had had a miscarriage in Feb., got pregnant again almost immediately and then had fallen @ 7 mos. pregnant and was on bed rest when I arrived in early Dec., not a normal environment. My diarrhea stopped in the midst of this.

It's a journey, Gene, you can look at what I've posted here and see the struggles we all face, but I'm still GF, as are my daughters and 3 grandkids and it has made a huge difference for all of us. Welcome to the forum, I hope you find the answers you need, as I did.

Please feel free to PM me if you have more questions. I am leaving on a job on Monday and won't be back til Friday, will take my computer with me, but have no idea if I will have coverage out in potato land where we're filming.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
janet
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Post by janet »

MY HEART AND PITY GO OUT TO YOU ALL. I GET IN THE SAME SITUATIONS, AND ITS NO FUN ONLY VERY SHAMING. I ALSO WULD LOVE TO WALK IN THE PARK WITH MY HUSBAND HAVE SANDWICHES JUST LIKE A NORMAL COUPLE.
I AM SO VERY ASHAMED, I TELL NO-ONE, ONLY STAN (MY HUSBAND) KNOWS.
I SAY IT WAS URGENT THAT I FIND A TOILET, TRUETH TO TELL, IT WAS TOO LATE. I WANT TO HANG MY HEAD.
HOPE IT WONT LAST FOREVER I'VE STUGGLED FOR YEARS.
I THINK NOW I'M TAKING ENTOCORT, SUCCESS MIGHT BE IN SIGHT.
I'M TOYING WITH THE IDEA OF USING DEPEND.
BUT, CANT FACE PURHASING THEM, PEOPLE WILL KNOW.

MARIE
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tex
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Post by tex »

Marie wrote:I'M TOYING WITH THE IDEA OF USING DEPEND.
BUT, CANT FACE PURHASING THEM, PEOPLE WILL KNOW.
You can order them over the internet, from WalMart or many other stores (such as drugstores, medical supply stores, etc.).

Or you can go to another city to buy them, where no one knows you.

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.
roxy1943
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Joined: Mon Sep 16, 2013 10:45 am
Location: Michigan

Been there too.

Post by roxy1943 »

Hi there, I was in the original group in about 2003 and had searched the internet for months for someone with the same thing. It was a relief to find others and to find out how much doctors did not know about this.

I was lucky, as I applied for ss disability as soon as I could not work. I got an attorney and although it took a year, we went to trial (attorneys wish) and the rehab person said that the law is you have 2 breaks, one in the morning and one in the afternoon and of course lunch. Basically having to fly to the restroom at any time did not leave me any options. She said you can not hold down a job under those circumstances. I got it. They went back to the last day worked and paid me.

However I went into remission in 2010 after 7 years of hell. I was so over medicated with lomotil I never should have been driving or taking care of my grandchildren. I questioned my gastro ent about entocort. It was a miracle. but then in 2011 I had to have a colon resection because my bowel had two twists in it. In 2012 I had to have an incisional hernia repair and was told then I may never go normal. They were correct. I am 70 and otherwise healthy except for RA. All i can offer is my experiences. I never go without a pad on and alway have wipes and try not to eat anything that might cause the flight to the restroom. Hugs to all of you, Roxanne :pigtail:
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tex
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Post by tex »

Hi Roxane,

Welcome to our internet family. Long time no see. Yes,I remember you from Sally's original board.

If you are interested, a few discussions from Sally's board have been archived, and you can read them by clicking on the links to them at the lower left corner of the page at the following link:

http://microscopiccolitis.org/

Again, welcome aboard, and as always, please feel free to ask anything.

Hugs,
Tex (Wayne)
: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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wannabenormal
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Been there

Post by wannabenormal »

Only been diagnosed a little over a year but I had accident with my husband in the car most embarrassing moment of my life and I'm sure there will be lots to come
Dana
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