New from UK

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

User avatar
fatbuster205
Gentoo Penguin
Gentoo Penguin
Posts: 342
Joined: Tue May 22, 2012 7:53 am
Location: Carrickfergus, Northern Ireland

New from UK

Post by fatbuster205 »

Hi! I am new today and only found this site because of trying to find an answer to why I ended up going to A&E twice over the weekend with severe pain and vomiting!
My story - I was diagnosed in 2004 with MC - I'm not sure exactly which type - following endoscopy and colonic biopsies. This was after previously being diagnosed with Irritable Bowel Syndrome - which often here means there is nothing wrong with you - go away!. At the time of my diagnosis I was 42, which seems young according to the literature I've found. I have had chronic loose movements anything between 3 and 9 times a day (on good days) and up to 40-50 times when not so good. I am treated with lanzoprazole and Asacol (1600mg twice a day) and have had one 4 month course of budesonide last year which helped for a while. However, about three weeks ago I went sluggish and ended up not going at all for 24 hours followed by a rock! I have suffered with pain up my right side referring to my back renal area. Anyway at the weekend I got acute pain and vomiting and was taken to A&E where they thought initially it was a kidney stone but having ruled that out they x-rayed and I have faecal impaction up the entire ascending colon - this is despite continuing to go every day two or three times although smaller amounts than usual. I was sent home with movicol and anti-spasmodics but had another acute attack the following night resulting in A&E again. I was googling constipation and MC when I came across this site. I am a member of NACC here in the UK but the vast majority of their information is Chrons or UC - and again that made me feel fraudulent. I hope I will find help here because aside from embarrassment and feeling somehow less than others with "proper" colitis, I am tired and in pain and generally feeling sorry for myself. At least the weather has turned good while I am off work this week trying to clear things - when normally I try and cope with the opposite problem! :oops: :sad:
Holly
Posts: 6
Joined: Mon May 14, 2012 1:25 pm
Location: United Kingdom

Post by Holly »

hi there fellow limey! sorry to hear you've had such a bad ride of things lately. i'm new to the board myself so you'll probably get better advice etc from the older hands. but yes the weather has improved my mood no end but it's also forced me to drink shandy in the garden which i know isn't good for my condition. but it was either that or pimms! :lol:

i've had a similar thing in the past couple of days (nowhere near as bad) where i was having really bad pains in my abdominal area generally which felt like bad constipation despite having been going fairly regularly. perhaps i've taken too much loperamide lately?! but some shandy and a couple of cigarettes have got things moving again. that's probably not very helpful but just thought i'd share anyway!
User avatar
fatbuster205
Gentoo Penguin
Gentoo Penguin
Posts: 342
Joined: Tue May 22, 2012 7:53 am
Location: Carrickfergus, Northern Ireland

Post by fatbuster205 »

Hi there Holly and thanks for responding so quickly. Yes a couple of cigs would help but I don't smoke as I gave up 18 months ago!! I know it is just time to let things work but the spasms are awful when they happen! I do take loperamide but I haven't done so for a couple of months as I didn't need it! It is great though to make contact with someone else who does know what this is like! :smile:
User avatar
Lesley
King Penguin
King Penguin
Posts: 2920
Joined: Sat Sep 03, 2011 11:13 pm
Contact:

Post by Lesley »

Hi guys,
What I wouldn't give for a really good pub shandy, pims or cider. I live in the states and they have NO idea what that means.

My MC is C based, so I know exactly what you mean. I can go 2-3 weeks without a BM, during which time I can climb the walls and glug or swallow every preparation known to man to get moving. Then it's non stop soft serve for 24-36 hours and the build up starts again.

I can't give you any advice because I have no solution for myself, but I can offer support and understanding, and a request for you to share solutions you find.

This is a great place! People are helpful and so friendly. They have saved my life!
User avatar
Zizzle
King Penguin
King Penguin
Posts: 3492
Joined: Thu Jul 22, 2010 9:47 am

Post by Zizzle »

Welcome Fatbuster!! I know what you mean about not having the "proper" form of colitis. We are supposed to feel lucky for having our form, but it seems we enjoy less remissions than the other types do. Diet changes are essential for us. I wish I could help you with your C issues, but sadly I have only D. I was diagnosed at age 35, and I'm not nearly the youngest one here. Even children get MC. Don't believe all the outdated stuff you read about MC. It's not just a disease of elderly ladies. In fact, most cases of so-called "IBS" are probably cases of undiagnosed MC. :pigtail:
Leah
King Penguin
King Penguin
Posts: 2533
Joined: Thu Feb 02, 2012 10:16 pm
Location: San Francisco Bay Area

Post by Leah »

Welcome fatbuster. I too only suffer from D, but I feel your pain. If you haven't already changed your diet, that is the first thing you must do. The more you read on this board, the more you will see that most of us are gluten and dairy free. Some are also soy and/or egg free. These top four offenders can cause inflammation that will only do more damage to your gut over time. And while you are at your worst, raw fruits and veggies are out too. You must give your gut time to heal - and then down the road you can try to add certain foods back in. So what do we eat? Mostly meats ( proteins), rice, and cooked veggies. Some of us can eat potatoes and cornmeal products.Our intolerances all differ somewhat, but we all know that food makes a HUGE difference.

The thing about Budesonide is that it can constipate you if you don't taper down to a lower dose. It works for me ( I'm down to one pill a day), but it's not for everyone.

I have been GF and DF and no raw fruits and veggies now for three months and I have had major improvement. I only go once- sometimes twice a day and it is mostly normal. Four months ago, I thought this was never going to get better. And I thought this diet was going to be so hard. It was at first, but once you know what foods work, it's very doable. I am now starting to "test" some foods again. It's a slow process but with patience, you CAN GET BETTER.

Read some of the older posts. It will give you some good ideas and advice.

Again, Welcome

Leah
User avatar
tex
Site Admin
Site Admin
Posts: 35073
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi FB,

Welcome to the board. Constipation-predominant MC is much more common than the chaps in the white coats realize. Few people go to a doctor with constipation (C), unless it's a emergency, and when they do, doctors don't do colonoscopies on folks who have C. Without biopsies from a colonoscopy exam, it's impossible to diagnose MC, and the GI docs aren't smart enough to realize that, so they just assume that C-predominant MC is rare. :roll:

When my symptoms got bad enough to force me to go see a doctor, I had the same problem -- an impaction combined with uncontrollable D. My doc felt of my gut and diagnosed me with colon cancer. He immediately sent me to a GI specialist who gave me the same diagnosis. The GI doc sent me to be prepped for a CT scan, and the prep solution for the scan cleaned me out, so the scan showed nothing remarkable. :lol: They never found any cancer, so after running all sorts of tests, the GI doc told me there was nothing wrong with me and sent me home. :roll:

My MC wasn't "proper" either. My cycles would start with nausea and horrendous gas, bloating, and pain, which would turn into D in a couple of days or so. After a few days of D, I would have normal BMs for a few days and then it would turn into C for maybe a week or so, and then the cycle would start over. When I was in the D phase, sometimes the cramps would come on so quickly and be so severe that they would almost bring me to my knees, until they passed. Anyway, the point is, I had alternating D and C until I finally figured out the problem and changed my diet. I've been in remission for over 8 years now.

Incidentally, I'm surprised that your doctor would prescribe lansoprazole. It has been known for at least 10 years that proton pump inhibitors (PPIs) cause microscopic colitis for some patients. If you happen to be one of the unfortunate individuals who is sensitive to PPIs, it will probably be impossible for you to achieve remission from your symptoms as long as you are taking a PPI. Not only that, but PPIs have been shown to significantly increase the risk of developing osteoporosis-associated fractures, C. diff infections, a weakened lower esophageal sphincter (which makes GERD worse), and a few other issues that I can't recall at the moment. They are prescribed to treat GERD, but the fact is, research shows that they actually cause GERD. PPIs are very risky drugs, and are best avoided.

http://www.ncbi.nlm.nih.gov/pubmed/12425567

http://www.gastrojournal.org/article/S0 ... X/fulltext

Again, welcome aboard, and please feel free to ask any questions that come to mind.

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.
User avatar
fatbuster205
Gentoo Penguin
Gentoo Penguin
Posts: 342
Joined: Tue May 22, 2012 7:53 am
Location: Carrickfergus, Northern Ireland

Post by fatbuster205 »

OMG! Thank you God and all you wonderful people! Still working out navigating this site but already I am stronger knowing I am not alone! When I was diagnosed by - and I will be careful here - a doctor (English) in Northern Ireland (I also am English of Irish parents moved back here) he got very excited because he had only seen it twice before! No doubt he did a paper but after 2 years I was then told - 7-9 times a day - deal with it! This is as good as it gets! 5 years later I get a letter telling me I have a colonoscopy ... days later! I was 20 days post hysterectomy! When I phoned I got a " how inconvenient" reaction! So I went to my GP and asked for a new referral. I now attend the RVH in Belfast and so far am very happy because they differentiated me and I am being treated medically. But I still feel embarrassed, not because of my symptoms, but because I don't have a "serious" problem or illness. Yet I am in pain - particularly acute at present - and all I want is someone to tell me it is legitimate. I have a disease. And sometimes I feel really tired!And now I am getting emotional so not feeling so strong - bearing one's soul can be difficult!
User avatar
fatbuster205
Gentoo Penguin
Gentoo Penguin
Posts: 342
Joined: Tue May 22, 2012 7:53 am
Location: Carrickfergus, Northern Ireland

Post by fatbuster205 »

Hi Tex,
I am on Lan.. because of a family history of duodenal ulsers. I have major acid problems without it. A history of bulimia for 10-12 years probably why. In theory in another 2 or 3 years that might resolve given my "remission" from the bulimia is now about 15 years with occasional stopping hiccups episodes. I always vomitted - never did laxatives - starved often but for long enough!!! However now I have lost 33lbs in 8 months. Sensibly, normally but maybe so much veg and fruit ...??? I know I don't drink enough water and believe me I am so working on that! But my GP who I saw this afternoon has advised to take the rest of the week off. Things have moved up the ascending colon about 4 inches and it will take 2-3 days to clear (hopefully) . I am so determined to be well, healthy, fit etc. I just cannot deal with pain!!! It is s£&)!
kitty16
Adélie Penguin
Adélie Penguin
Posts: 175
Joined: Wed Mar 21, 2012 4:48 am

Post by kitty16 »

Hi,

Welcome, I know how you feel about finding this site. The people here will adopt you and make you one of the family. I'm pretty new to all this and come here almost daily with questions that are always answered.

Hugs,
K
maestraz
Gentoo Penguin
Gentoo Penguin
Posts: 459
Joined: Sun Feb 27, 2011 4:08 pm
Location: CT

Post by maestraz »

Hi, and welcome to the group.

I would rip into anyone who tried to suggest to me that MC is not serious. No, it doesn't generally kill you, and no, it doesn't generally cause cancer (either of which, according to my doc, would result in an infusion of research dollars). But if any of the docs who glibly suggest that MC isn't serious had to live with its impact on daily life, they might be a little humbled. Not to mention the auto-immune issues.

2011 was a very humbling year for me, I can tell you that. I was confined to my home for most of January to June, after a March diagnosis, feeling crummy, exhausted, isolated, embarrassed by the symptoms, and trying to gets meds and diet under control. I don't know how much more I might have suffered had not my GI doc known about MC, and had not my sister, a nurse, said, "You know, I bet there's an online group you could find of people who have MC." I'm glad you found the site, and wish you the same relief I have gradually gained through interacting with the folks on this board.
Suze
marihabs
Adélie Penguin
Adélie Penguin
Posts: 54
Joined: Tue Mar 27, 2012 10:25 pm

Post by marihabs »

welcome FB...you have found the 'bright spot' in this disease we live with... the kindness, support and information available here is astounding.


-Mary
User avatar
Lesley
King Penguin
King Penguin
Posts: 2920
Joined: Sat Sep 03, 2011 11:13 pm
Contact:

Post by Lesley »

Fatbuster - I know so well how you feel. Vindicated! It helps so much to know you are understood. My GI called me and said "good news. Well, good for me, not so much for you" and then he told me I had MC. Exactly like the joke.

Tex - I gave up PPIs totally, but got into such pain and so much inflammation I have had to go back on them. I am hoping I will be able to decrease them significantly and maybe get off them later.
Fatbuster - I hope you can get off the PPIs, but if you try take it slow. Decrease them slowly and see how you do. Trouble is, once you have MC + GERD it's a bit of a vicious circle. The inflammation can develop into Barrett's esophagus, and that is precancerous. So decreasing the inflammation becomes very important.
beni
Adélie Penguin
Adélie Penguin
Posts: 111
Joined: Fri Sep 23, 2011 8:31 am

hello from Ireland

Post by beni »

like you I was Very down about this M.C. thing, I had a colonoscopy this time last year and it took untill September to find this site and I can HONESTLY say without the support and advise based on real experience I wouldnt be where I am today. I also tried the british colits support group and they told me they had never heard of this type of colitis!!!! My consultant is very good and open to ideas, My symptoms were so called IBS for years then fire hose D. which got so bad I was loosing half a stone a week for several weeks, I was put on endocort 9mg but every time I tried to reduce it I had a bad flare, once I found this site I cut out all gluten and guess what I starting gaining weight FAST, I am now on 3mg a day and although I keep finding new things I cant digest,ie lettuce last week, I am healthy most days, my main reason for replying is your fatigue, oh boy how I remember that, I just wanted to lie in bed with a hot water bottle and sleep, this will go once you start getting better, you have a body that is attacking itself, anyone would feel tired,given time you will reach a cease fire and then the peace process will begin, hang on in there,you have a REAL disease, you are poorly but you can get better, use the site, we are all here for eachother, sounds a bit soppy but its true, BENI
User avatar
fatbuster205
Gentoo Penguin
Gentoo Penguin
Posts: 342
Joined: Tue May 22, 2012 7:53 am
Location: Carrickfergus, Northern Ireland

Post by fatbuster205 »

Thank you so much Beni - I am only just out of bed and it is gone 11am! I want to sleep so much but equally I need to keep moving. I am not very patient as a patient! Biggest problem at the moment is I should eat but when I eat I get pain and D because the blockage is moving but still there and I am having to take movicol! Given I have had chronic D with occasional lapses of normality, to have severe faecal impaction is just wierd! I have been reading some of the posts and am so struck by the food intolerances. But I have never thought I had any and no doctor has ever suggested this line of enquiry - that is going to be an interesting consultation when I see my consultant!!! Thanks everyone! I feel confused but it is great to know I am not alone!
Post Reply

Return to “Main Message Board”