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.
First, please allow me to introduce myself, and to thank you for providing this informative and supportive forum!
I'm a newbie here. I just got diagnosed after 1 1/2 yrs of and 4 stays in the hospital. I was released from the hospital 3 weeks ago with a diagnosis of LC. I had been severely dehydrated and my kidneys had started to fail. I had been having D bouts 15-20 times daily, and the pain became intolerable!
What a relief (? I think) to finally know the cause of my pain and diarreah! I had been following a GF diet, but I was not getting any better!
I'm on Entocort AND uninsured. Yes....I work, literally 45 hrs a week to stayed medicated! My GI is going to test me for other problems. He feels as though there could be multiple issues.
My Mother, Brother and Maternal Grandfather all had Colon Cancer, so he's particularly focused on my care.
Anyway..my personal issue is this...I am MORTIFIED to use the bathroom at work, and in general, in public. Aside from the embarassing noise associated with my frequent BM's...there is the super unpleasant...odor. I am not anywhere near remission, and I think I just need a Pep Talk!
In September, after several years of BS IBS diagnoses, I was finally diagnosed too. My wife called me to tell me and was crying because she was happy they finally put a name to my problem. So I understand the frustration you experienced.
First, you can buy an Entocort equivalent at www.alldaychemist.com. Without insurance, this is a good way to go. I have insurance and still found this to be a more economical option. I hope this brings you some financial relief.
I too feel like I work ONLY to pay doctors and pharmacists. It's a never ending cycle. You are not alone. It's a tough road. Try to keep a good work/life balance and avoid stress as much as possible. Easier said than done, I know. But this board will help you stay in control. Good people here.
Ah, the bathroom thing. It is what it is, I say. I understand this all too well. My problem is that I fly a lot so I have a huge phobia about using the bathroom on the plane. Is there, perhaps, another bathroom that is not as popular, that you can use? If not, you simply need to try to forget about what others might think and simply do your business. Isn't that what air freshener is for?
I wish you much health, dear. With the help from the people on this forum, including diet revision, you will get better.
Regards,
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Using a public bathroom with an active case of MC can be very embarrassing. I used to work in a school and the closest bathroom to my office was a student bathroom. I'd rush to it, only to find a student primping her hair in front of the mirror. I'd take my position in a stall, and try as best I could to hold off until she'd leave, only to have another student arrive. I would try my best to be quiet, but it's hard.
My daughter (who had IBS until she had children) used to routinely flush the toilet while she was going. Sometimes it's necessary to flush more than once, but it accomplishes both getting rid of the odor quickly and disguising the sound. Putting the lid down before flushing, if you can wait that long, will remove a lot of the odor, too.
Gloria
You never know what you can do until you have to do it.
That is a problem with MC, but it is something we just have to get used to for a little while. Hopefully remission will come soon, limiting this situation for you.
You mentioned meds but what about diet. As part of achieving remission we do need to identify the foods that are causing problems and for most of us it includes gluten and soy and for a fair number dairy as well. It does take a while before the benefits of eating gluten, soy or diary free really kick in; for me it took about 6 weeks. I did find that besides gluten, I was also reacting quite a bit to soy and somewhat to dairy as well. It was only after eliminating all 3 that I really noticed the difference.
I found that by eliminating the items that I was reacting to that it certainly helped with the frequency and the odor. I found that dairy products especially contributed to the unpleasant odor.
Welcome to our internet family. Yes, I also found that using public facilities was a daunting task, but I was always even more concerned about not making it there in time.
Hopefully, the Entocort will begin to work within a week or so, and that aspect of your life will no longer be so intimidating. If not, you may find it necessary to make some dietary changes, to shorten the time required to reach remission.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
I've taken most of the polls here, and have noticed that perhaps my Swedish/Italian ancestory is a factor? Also..the majority of us are "Guardians". I 'm sure that we exacerbate the symptoms because of our "worrier" type of personalities?
Forgive me if this is "old news"...I'm a newbie and I find this to be so enlightening!
i can sense you happiness that you found this site, and that you now know you are not going insane, the symptoms are the norm, and there are people here that understand.
once you figure out what works for you re treatment (meds - Meds/Diet - Diet - natural therapy etc) things like the odor and the consistency and frequency will improve, my motto for managing MC is, there is no right way or wrong way there is your way... what works for one person may not work as well for another so it is like a massive maze, with a bit of crazy 2 steps forward 1 step back dance.
Happy reading, there is lots here to absorb, and the wonderful group of people make this place invaluable for coping with MC in your life. I am indebted to this group for my sanity....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I totally understand the public and workplace bathroom issue. Luckily the job I have now I have my own bathroom and absolutely love it. Prior to that it was a real embarassment but I just adopted the motto that this was my disease and bathroom trips would be what they were. Definitely know the feeling of trying to wait while no one was there but sometimes that is just a lost cause.
It seems that you have a decent grasp of the illness and possibly keeping a food diary would help in the search to see if other foods - gluten, soy, dairy, etc. - might be also afflicting you. Elimination of these will help towards remission and also problems with odor and gassy noise.
Stick around and ask away - we have all been there.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
Hi Barbie and to our internet family. You will find lots of support here, along with 5+ years worth of accumulated wisdom and advise on how to live with this dreadful disease. The one thing we have all learned the hard way is to be patient and persevere, there is simply no quick fixes for getting better. I look forward to following your progress through your posts here, and hope you will become an active member of this forum.
Is that you and your little boy in the picture? You both look adorable!!!
On the bathroom issue - I pretty much developed the same technique as Gloria - lots of flushes to obscure the noise and minimize the odor. Fortunately, as your BMs decrease in frequency and urgency, this issue will take care of itself.
Wishing you lots of luck in finding your way back to health.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Your commenst are right on! Many of us have European ancestry. The highest incidence of celiac disease is said to be in Ireland, and when you think about it, most countries rely upon a main grain, but in Ireland the potato is king! This may be because we are descended from hunter-gatherers (HGs) who lived in that part of the world. Some of us here have found that we do best on the HG/caveman/paleo diet. This diet does not allow any grains/dairy/soy. Here's the theory: In the eons that humans have been living on earth, they have been farming for less than 0.5 % of that time. - which has not allowed genetic changes to occur to be able to handle the new foods appropriately. I, for one, have multiple intolerances and do best when eating HG style, and my ancestry is 100% European.
We have often wondered about the personality similarities among us. I'm not aware of any studies, but as a group here, we seem to be extremely empathetic and caring compared to the general population. At least that's my observation. I have never seen another support website with the degree of caring that we have here. I know that I am one whose gut is very sensitive to stress, and I'll bet it's true of most here.
Looking forward to further chats.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Welcome Barbie!
Fellow 1/4 Swede here. I'm also 1/2 Guatemalan and suspect my bad genes came from the Guatemalan side. Go figure. I'm sorry it took you so long to be diagnosed. I royally disliked my GI, but I suppose I should give her credit for suspecting MC right away. Regarding the use of public bathrooms, or worse, powder rooms at other people's houses that may not have a fan, I was wishing for portable air fresheners this holiday season. Maybe a single use packet you can keep in your purse and break open as needed. I suppose the natural citrus sprays are small enough for a handbag, but I'd sure love "Oust On the Go"!
Your post brought back a rush of gladly forgotten memories! I am doing so well on entocort these days ( 3 monthes on it) that I haven't had to worry about that for quite a while now ( the noise and smell issue) but I remember being so mortified sometimes. I used the wait ( till alone) and flush (frequently) techniques, too.
Hopefully soon these will be distant memories for you as well.
To your quickly improving health,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
I know the smell is horrendous.. even when using the bathroom at home.. I flushed a lot hoping to get most of the mess down the drain as soon as I could. Probably contributed to our water bill. Also whenever I filled my diapers.. I put them in a plastic bag and got them to the trash right away.
It is a shame that our illness is so difficult to explain to people.. who wants to hear about someone else's bathroom problems...LOL Everyone is sympathetic and helpful if you break an arm.. but no one wants to hear about your diaper bill.
Are you getting your entocort from Canada where it is cheaper? There is a link somewhere here for the place many people here use.
grannyh
to our internet family. You will find lots of support here, along with 5+ years worth of accumulated wisdom and advise on how to live with this dreadful disease. The one thing we have all learned the hard way is to be patient and persevere, there is simply no quick fixes for getting better. I look forward to following your progress through your posts here, and hope you will become an active member of this forum.
