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sad tales: women with ibs-d page twenty-one

The tale of...Kim (12 October 2007)

I have suffered from IBS since I was 18, when my gallbladder was removed. I am now 39 and it only seems to get worse as the years go by. I recently applied for disability but was turned down flat. The rejection letter I received said that due to my age and my education that I should be able to find a job doing something. I don't understand what my age and my education has to do with the cramps or the endless bathroom trips I endure every single day.

I plan to appeal this as soon as possible. I never have understood why people think IBS. isn't disabling. I also have a bad back but I could still work if that was my only problem. I have had so many jobs it isn't funny. But they all end the same way, either I get fired because I can't fulfill the job's requirements because I'm in the bathroom too much, or I end up having to quit because I get so sick I can't even go into work and miss too many days. If anyone has applied for disability because of IBS I would love to hear your story.

E-mail Kim: [email protected]

The tale of...Liz (7 February 2008)

I am a 25 year-old woman who has been suffering from IBS-D and sometimes C for about one year now. I just about cried when I came across this website, because it is really comforting to read other people's stories and know that I am not alone out there, which I feel like I am a lot. I think the most frustrating thing for me is that no-one seems to understand. I get the 'Well, why aren't you going to your doctor?' comments all the time...and I do go to my doctor, I have been to my doctor about five times due to this, and I am finally seeing a specialist next week.

My story begins on an airplane ride home from the Dominican Republic. Now, I am aware of the fact that the food and water down in the Caribbean can cause diarrhea in many people, especially upon their return home, but this was my first real attack. We had just landed in Boston and everyone was standing in the aisle waiting to get off the plane, when all of a sudden I got these severe abdominal cramps that I had never felt before.

There was no way I was going to make it, so I told the stewardess to please move people out of the aisle so I could get to the bathroom. It was the most embarrassing moment of my life, these planes are small, and since everyone saw me run to the bathroom I'm sure many of them heard what was going on. I had severe diarrhea, and when it finally stopped I walked out to an empty plane with just the pilot waiting for me; absolutely mortifying.

Anyway, throughout the whole time in customs my stomach was 'on fire' as I described it to my friends. When I finally got home I had diarrhea all night. The next day I went to my doctor to make sure it wasn't a parasite or food poisoning from my trip. They did a number of tests and everything came out negative.

Ever since then, every time I ate dairy or drank alcohol I would have an attack. So I thought well, maybe I am lactose intolerant, and I am just getting too old to handle liquor. But the symptoms got worse, and I finally decided to see my doctor. She told me to start out by taking fiber pills four times a day. It helped for about two weeks; I felt on top of the world. I had no diarrhea, and had a nice solid healthy BM three times a day. I thought wow, maybe this is finally under control. But after two weeks of bliss, it all came back.

But the problem is, I have no idea when these attacks will come on. I could be driving, at work, walking my dog, at the movies and bam, I get diarrhea. It is awful. It has taken control of my life, because there are some weekends when I can't go out with friends because I am in so much pain, and would rather sit at home alone than go out and risk having an attack in public. It has completely prevented me from having any sort of dating life. The last thing you want is to have an attack on a date...so embarrassing. There are times when I am afraid I will lose my job because I have gone home sick or called out.

I have never tried any medications, but I am willing to try anything that may give me my life back. I am just happy that there is this website where I can share my story and get support!

E-mail Liz: [email protected]

The tale of...Joy (February 2008)

I'm a 27-year-old woman from Essex, and I was diagnosed with IBS four years ago - my boyfriend and I had been on a two-week holiday, and I only went to the loo once, so he insisted I see the doctor. One blood test and rectal examination later I was diagnosed.

Until then, I'd been in denial. Bloating wasn't so predominant (it is now, sadly), I drank and ate 'normal' dairy, spicy foods and fats - the things which trigger an attack now - without really thinking about it. In 2000, I went to Greece and had gastroenteritis for three or four days, and I think it stemmed from that, although I tended towards frequent loo stops during my teens. After that, the fact that I hardly went to the loo is something I can't now believe I ignored!

Now I alternate between IBS-C and D. On the morning of my wedding, I didn't leave the loo. Today, I've made some movements, but they were 'reluctant' to say the least. I suffer right-sided pain and bad wind. The cramps have died down in the last 14 months since I started having Actimel everyday, now I only get them every now and then.

Mentally, this is so challenging. I can't count how many times I've been driving and just need to go to the loo, the times people start a long conversation and all I can think of is how I need to get to the loo. The times I've bought a nice outfit, only to try it on and I look five months pregnant.

I've had at least five doctors since being diagnosed. They have varied - one was extremely knowledgeable and a real help, but the last one upset me the most, saying it was psychological - yes, I've changed jobs, planned a wedding and had a relative die in the last 12 months, but what about the years before that? I came home crying; I wish I had had this website to show him.

Love-life - well you all know how sexy you feel when you're constipated and bloated! I've been lucky as my husband is very understanding, he makes my hot water bottles and lends a sympathetic ear. But last night we couldn't got to the pub because I was so bloated from constipation (and therefore uncomfortable), so it has a knock-on effect on our social life.

Other people - dairy's my enemy but people still give me chocolates, my husband buys cheesecake, I'm still offered ice-cream as a dessert (I'm not too bad with cheese and yogurt). My friends have got very used to me moaning, but always question why I'm not drinking (I try to avoid too much alcohol), why I'm not having pudding, and put too much milk in my tea.

Positives - I find exercise helps, four times a week doing running or aerobics. I try to keep relaxed and not to literally tense up my stomach; but I can be on holiday very relaxed and only worrying about where the next ray of sunshine is coming from, and I'm still affected. Linseeds before I go to bed have helped, and I've just started using Regucol so I'll see how that goes.

Anyway, that's far too long a story for anyone to read, but at least I've got it off my chest, and I am so relieved that this website is here for me, and us.

Update on Joy...

Earlier this year I was going to write that my IBS really has almost stopped to the point I was only using over-the-counter Movicol if I hadn't used the loo for a couple of days (I was C to D usually). I wasn't sure whether to attribute it to turning vegan (as I'm on the fence when it comes to IBS related to diet) but certainly since last December I had noticed I didn't really suffer any bad spells, and just got attacks when I'd had too much fiber.

All of that ended last month, and my doctor now says I'm having a bad spell. My flatulence knocks grown men over if they're walking behind me, I've felt nauseous at times, and I can't remember the last time I saw my toes (my stomach has suffered less bloating this year). My appetite is also really out of kilter. A pharmacist prescribed Colpermin which worked for a couple of days, then the doctor prescribed mebeverine which I've taken for a week with very mixed results (overall, no change unfortunately).

I'm so unhappy about this - the only things that have changed for me since the beginning of September is that I now eat apples (I wore a brace until then) and I wear a retainer since the brace removal. Perhaps apples were always a culprit but they never caused me such a problem in the past. Perhaps my retainer hygiene isn't what it could be, but then having a brace was hardly the height of infection control.

I guess I should have 'touched wood' when I caught myself thinking 'maybe the IBS has gone away for the foreseeable future'. If anyone has had a similar experience of going at least a year without too much hassle, then suddenly you get what you've been told is an attack, I'd like to swap shoulders to cry on.

E-mail Joy: [email protected]

The tale of...Alecia (25 February 2008)

I've had IBS for as long as I can remember, so let's say 30 years, as I am now 30 and was basically born with GI problems. I suffered through constipation in childhood (was hospitalized for it at one point) as well as diarrhea (hospitalized for that and accused, at the age of 10, of being anorexic...though at fault were the doctors that had me on four tablespoons of mineral oil each day).

My problems, as I got older, caused hemorrhoids (I had to have surgery...can definitely say you should get banding and have them treated as opposed to leaving them and having them go necrotic like I did!) and other problems. As I've matured the constipation is less frequent - I can go a week without going, but it always resolves in diarrhea now.

I've got two children, and I suffered wicked constipation through my first pregnancy (and a blocked bowel from iron pills) and experienced pre-term labor as a result (though I did carry to term). With the second pregnancy I had diarrhea the whole time...I spent two hours on the toilet the day before my second boy was born and had a brutal bout again two days after he was born.

My youngest always wanted to be with me, so even in the middle of the night we'd be found in the bathroom with him in his bouncy chair or cot (or, when the urge was instant, in a pile of towels thrown onto the floor to keep him comfy). I'm lucky that my hubby is quite understanding. He has never really suffered anything like this, but he was on high dose antibiotics once so did have one day where it was like having IBS.

My most recent symptoms are severe pain across my back at the bottom of the ribs, which is followed by brutal diarrhea within the hour. I get bloating, nausea, diarrhea, abdominal pain, gas (hubby never farts...I'm a total fart factory and it is rarely controllable), heartburn...all that good stuff.

So now the embarrassing part...For my 30th birthday hubby decided to get me a gift certificate for a fine dining restaurant. We got a sitter (thank goodness for grandparents!) and headed out for a 5pm dinner. It was a wonderful place. Had my ginger ale, then we had a bruschetta appetizer. It was great! I ordered a small steak, mushrooms, roasted potatoes and veggies.

I got about a quarter of the way through the meal when the nausea hit. I made a quick run to the bathroom (I thought if I stood up for a few minutes it might pass). Made it back to the table after five minutes (the place was not busy so it was very obvious where I was). Ate a couple more bites, and then the pain started. Told hubby quietly what was going on and that we needed to get home ASAP. Waiter came and we asked to have them box up the leftovers as well as dessert. Unfortunately I then had to make a run again.

I spent 20 minutes in the bathroom (wow...those fine dining places have amazing bathrooms! The weird thing was that the toilet kept flushing on auto-flush every minute or so). When I finally made it back to the table hubby was sitting there with our boxed-up food and we paid and left. They kept looking at me and I found out after that they'd asked hubby if I was OK and if the food was making me sick! He said he told them I'd been feeling unwell all day.

So my big birthday dinner, which cost us over $100 (for two people who don't drink that is a huge bill...especially when only one of us can work full-time!) turned into an embarrassing experience and I'm mortified. I made it the 10-minute drive home and went again...then ate dessert and was fine the rest of the day.

I hate my IBS! It factors into everything to the point that I always make sure we've got extra kid diapers in the car and a garbage bag and roll of toilet paper in case I have an accident! Hubby really wants to go camping and I'm afraid to because of being too far from the bathroom.

E-mail: [email protected]

The tale of...Pat (25 March 2008)

I first began to notice an increase in defecation around June of 2006, never true diarrhea in which I'd have to find a bathroom in seconds, but rather a frequency (sometimes up to seven or eight times at the extreme), and a change in consistency (fair amounts of mucus, sometimes only a mucus plug). I had ceased taking Wellbutrin XL a few months before that, and that medication was for depression, not IBS, and I did not feel the need for it any longer.

However, another factor that may have been causative, or in combination with the former, was a regimen of antibiotics in the winter of 2006 and 2007. I have had frequent use of large doses of antibiotics, as far back as the 1980s when I was in a pilot program that used large doses of doxycycline as a possible treatment for PMS. I entered that program in my early 40s, and I had experienced PMS and dysmenorrhea for most of the time I menstruated. The dysmenorrhea more or less ceased while I was on the birth control pill, and the PMS may have in fact started when I switched to the copper seven IUD for a few years.

At any rate, it was a problem for several years, and as is the wont of the medical establishment when dealing with any problem of a chronic, and as yet relieved by known medical treatments, condition affecting females, the psychological issue arises (they're hysterical, unstable, overly emotional, ad nauseum).

I was getting more concerned about the frequency of bowel movements, so I went to the internist, because I also had some minor upper stomach pain on occasion. I told her that my Mom had had an ulcer which eventually required surgery, and that I had read that the H. pylori bacterium might be implicated. She said there was a test for that, which came back positive, and I took the Prev-Pac treatment.

Around that same time I had a slight but persistent pain above my right eye which I consulted a neurologist for. His series of blood tests showed a B-12 deficiency in October 2006. By the way I am presently 66 years old and this stuff started about two years ago. Ironically, that September of 2006 I had completed my annual comprehensive physical with my Internist, when several blood tests were taken, but none were specified for the examination of B-12 levels. Unless one presents with a specific problem and engages the correct medical specialist, certain medical tests are not done. So, I'm treated with Prev-Pac in October 2006, then in November 2006 I get another nasty respiratory infection, which I get antibiotics for.

Then in late December 2006 and into January 2007 I had Lyme disease, which I got large doses of doxycycline for. I still have IBS, which really rears its ugly head in severity in October 2007. Enter my GI doctor. He started with a treatment of Xifaxan, 200mg three times a day, for 10 days. That was from mid-November 2007 until after Thanksgiving. This stuff worked like magic. I could go to the bathroom once a day, no pain, just normal. That was followed by 14 days of OTC probiotics, and that's when the IBS symptoms returned.

So, next came Flagyl for 10 days, then Xifaxan for 10 days but only 200mg once per day; then Donnatal two times per day, 200mg, I think, combined with Nortriptyline 10mg to 20mg, at bedtime. Last visit, GI recommended Zoloft because I might be depressed. Well, Zoloft causes more frequent BMs, but Wellbutrin doesn't. I stopped all the last prescribed regimen and requested Xifaxan again, and called my internist for a Wellbutrin RX after being refused the Xifaxan by my GI - both refused my request.

I'm scheduled for removal of a cyst on my right kidney that might be a renal cell carcinoma, found when I was doing an MRI for a lower spine problem, so they don't want to prescribe anything. So, I'm left with solving this dilemma on my own. I started Pepto-Bismol two or three days ago, and I also take Metamucil. Well, I have no churning, less stomach pain, and the frequent BMs are gone, replaced by a somewhat normal BM with some pebble-like, stone-type stuff also, once today. Why should Pepto, a traveler's diarrhea OTC prep, work, as did the Xifaxan at 600mg, if indeed there isn't some adverse bacteria, as yet unknown by the medical community, or something akin to that?

Right now, I'm hoping that this will tide me over until I find a GI specializing in IBS, after I recuperate from impending surgery. I think I'll see the light on all of this, but not until a while from now. I wish all who suffer from this the very best chance of relief from the symptoms of IBS, and hope of the eventual discovery of the cause or causes of this lifestyle-changing 'syndrome'. Good luck to all of us!

E-mail Pat: [email protected]

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