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happy tales: women with ibs-d page nine
The tale of...Laurie (6 August 2006)
Although I probably always had slightly temperamental bowels growing up, it wasn't until I was 20 and transferred to a new school that IBS fully claimed me and my life. I do not know what the main trigger was, but the very unhealthy and greasy cafeteria food at my university, the stress of a new relationship in the midst of this problem at an age where I was still too modest to share, a hectic work/school schedule that allowed little time for sleep, and the stress of using a public bathroom definitely all contributed.
That first semester of my life at this new college was a nightmare that found me oftentimes in the bathroom several to a dozen times on any given day (and in a public bathroom in a dorm - how embarrassing!). Often, out of desperation, I double-dosed on Imodium, which then only constipated me for days or up to a week until I had another set of explosions.
I skipped classes and work, and was threatened with being fired. I am sure IBS sufferers understand this: having this medical problem that's embarrassing to explain but threatens your whole livelihood. I lost about 20 pounds that semester (and I was already skinny to begin with) and was simply a miserable person to be around. My boyfriend told me so and broke up with me. I was afraid to go out and didn't even explore the town.
The next semester, I wound up taking a leave of absence and returning home (not a very happy place for me, but the lesser of two evils at this point) where I subjected myself to a series of tests - colonoscopy, barium enema, rectal exams, stool samples, etc. When ulcerative colitis and Crohn's were ruled out, making IBS the only diagnosis, my doctor no longer had any interest in me, as though I was at fault, and gave me no more input on my life. Doctors can be so insensitive at times.
When I returned to school, I requested moving into a suite (which meant a private bathroom), lessened my work and school load, and argued my way out of having a full meal plan so that I could buy a lot of my own food instead. Of course, school officials accused me of being anorexic for my weight loss and were totally misunderstanding, but after I threatened to file official charges (after all, I did have a formal letter from my gastroenterologist backing me up) for not helping me with this issue, I got what I wanted.
This all helped a little, in some cases a lot, and I had a better life. However, I still had very bad bouts and my life was still tedious at a lot of points, but at least it was a life. There were a couple of times where I soiled myself, but luckily it was always just as I made it to my bathroom, in the privacy of my suite, so I was spared public embarrassment. I was still embarrassed for myself, though.
I have put up with IBS on and off for several years now, mostly with diarrhea, but even some horrible problems with constipation, and only in the past three years have I seen significantly consistent improvement. First of all, I also have a menstrual disorder known as endometriosis, which causes extremely painful periods due to growth of endometrium in other pelvic areas. Well, after being diagnosed with this, I had laser surgery to remove as much of it as was possible. Turns out a great deal of it was on my intestines! I am sure that contributed to some of the problem as within six months of this surgery, my IBS became a lot more tolerable.
Other things that have helped are diet and holistic therapy. I find that acupuncture/magnet therapy (even with Chinese herbs) and yoga really do help, even deep tissue and shiatsu massage. Some of my health insurance covered this, and some not, and though it sometimes was expensive it was worth it.
And even though for the longest time I thought it didn't matter what I ate, diet really does matter. I gave up coffee and switched to tea (coffee = bad, but oh I loved it). I am really careful and conservative with greasy food and overly acidic food (I usually put olive oil on my pasta instead of tomato sauce). I usually take slippery elm with at least one meal a day. I also take one or two 'swallowable' (not chewable) acidophilus tablets almost everyday to keep my gut flora in check. I drink lots of chamomile and ginger tea.
Most of all, I make sure my diet is based on soluble fiber or 'white foods' such as bananas, rice, oatmeal, white pasta, white breads, etc. Not that that's all I eat, but I make sure to have some of these everyday. A great website, Help for IBS, speaks more of this and it's helped me more than any doctor. I also take one or two flaxseed oil pills every other day with food, except for when I am having a diarrhea bout, or feel like I might - it makes it worse then. Flaxseed also helps with my terrible menstrual cramps and helps keep me regular (both period and bowel movements).
When I am getting/have a really bad case of diarrhea, I find charcoal (only one or two tablets) helps a lot more than Imodium and won't constipate me. I only take this during extreme break-outs as taking charcoal regularly can absorb vitamins and nutrients as well as bad stuff. Doctors also prescribed Librax or Bentyl, an intestinal muscle relaxant, that I only take when cramps get really bad, and it helps. Other things that sometimes help are Equalactin and digestive enzymes (sparingly - I don't depend on either).
Things that I found do not help are Imodium (it sometimes stops diarrhea if I take enough of it, but then constipates me terribly and just creates a cycle), Metamucil, Citrucel, aloe vera juice, psyllium (all cause bloating, gas, diarrhea), stimulant laxatives (make me go too much), and Fleet enemas. I found that during constipation, a plain warm water enema is better than one with salt, and only used in extreme situations. I haven't had to use one in years, though. Enemas can make you dependent on them and then you can never train your body to go on its own.
The hardest part of IBS is still always acknowledging that there are some things I might never be able to do. I will never be able to go camping and rough it for weeks at a time, as I'd like to. I need to be close to a bathroom and I need my special diet. I can't live on canned beans in the wilderness. I wish I could. But I can't. I also can't just scarf down a bunch of nachos and a pitcher of beer. I will never to be able to eat with abandon, but always with caution and prejudice. But I can have a few nachos and a bit of beer, if I am careful, and must accept that sometimes even that might be a problem (but if I am safe, not usually).
My job and life are no longer in constant jeopardy and I can do most of the things 'normal people' can do. And I used to think IBS would kill me. I am also in a relationship with an understanding boyfriend. If someone doesn't understand or makes you feel worse about it, they are not worth it and will only make it worse for you.
So I thank whatever higher power there is that it's better and hope maybe this will help other people/women out here (especially the endometriosis tip).
E-mail Laurie: [email protected]
The tale of...Claire (August 2006)
I do not know where I stand really. I suffer from alternating IBS, but I am no longer severely constipated (I was for 22 years!). A change of diet and TCM (traditional Chinese medicine) has sorted that out. However, I now live in fear of going too much. But then again, one day I might not go, be happy about that, but pay for it the next day (frequent loose movements, not diarrhea).
I will not eat when out, I refuse to go to meals, and I hardly ever go somewhere after eating, especially breakfast or lunch. I've lost two stone, half a stone in a week (slightly worrying), and it looks like this may continue. For some reason, I calm down by dinner. I travel a lot, so I need to take something for my nervous stomach. Even if I think I might be OK for needing the loo, I take something anyway.
I'm not ashamed to admit I'm psychologically addicted to the one prescription drug I know will prevent my bowels from maybe exploding - that's codeine phosphate. To start with, you feel drowsy, but by now I'm used to it and I love how relaxed I feel. But I also feel guilty, as if I'm cheating, and I should just get over my anxiety attacks...
Anyway, I do not know then if this is really a happy story (as Codeine is only to be taken as a short-term drug). But if I am going to an event, or traveling long distances, and don't want to worry, this is a brilliant drug. It slows down movement in the intestines, and hasn't let me down. I don't take too much, or I would be away with the fairies 24/7.
I only take one if I'm doing long distances, need to be away from a loo for a long time, or have eaten something bad - one works for about four hours for me. My doctor wasn't too keen on prescribing me more since my bout of bad diarrhea has gone (thank God). I think he realizes I have come to rely on it, and I won't go anywhere without it in my handbag for reassurance. But if it gives an IBS sufferer a day to enjoy themselves...It's also an amazing painkiller, brilliant for that time of the month, when you thought your abdomen could take no more! (Please note that this is the only conventional drug I take.)
I am very curious to see if anyone out there is suffering from what they think is going to be an attack of diarrhea, but instead, it's just an attack of mucus? I am beginning to think there is something else wrong with me when my bowels produce this substance. It's pretty odorless, sometimes just a bit like water, sometimes like honey.
I used to bleed horrendously from constipation, but that was just that - constipation. But why is mucus appearing? It's not diarrhea, but it's just as noisy, embarrassing and discomforting, especially when you thought you might produce some solid stools with it (at least!). I instantly get butterflies. At least you know diarrhea is a form of a stool, but I have no idea why the liquid lining of my intestines is leaking out?! I get it regardless of eating, or my mood (but no, I would not swap it for the runs!).
Also, I am interested if other IBS sufferers have had a lot of UTIs (urine infections)? I had two bad bouts of a severe bladder infection (I thought I was actually dying) just when my IBS was at its worst, and my doc said it can be related to IBS.
E-mail Claire: [email protected]
The tale of...Vicky (13 August 2006)
I am 30 years old. I have only been diagnosed with IBS for 18 months, but believe I have been suffering since my early teens. I have been to the doctors on a regular basis complaining about my symptoms and every time I got fobbed off. As I hadn't heard of IBS, I never even thought it could be that. It was only through nagging that I finally got something done and I was sent for an operation, laparoscopy, where they put a camera through your belly button.
It was after this that I was diagnosed with IBS. I was also told by the doctor that my bowels are sitting in the wrong place and sit right on my female organs and they contract against each other. The pain is unbearable, to the point that I collapse. The doctor laughed when telling me all of this, as she said they had had me upside down in the theater trying to dislodge my bowels, but they were staying put.
I do all the things I am supposed to, watch my diet, am a keen exerciser and lead a very healthy lifestyle. I have been given several medications to try, but my complaint with the doctors is that nobody monitors what you are taking, how often, if it's working, the side effects, or if your body is becoming used to these drugs. They have never asked me my medical history - my father suffers with diverticulitis, and my grandmother had bowel cancer. More should be done and I feel IBS should be monitored every six months to a year.
The toilet habits are a pain and my boss says there should be a turn-style on the loo as I go that often. Nobody understands and it's seen as a bit of joke. I went home ill last week with it and my boss said to me that was for the best as he didn't want me to pass it round, what can you say to that? My father and I discuss our problems but everyone thinks that it is disgusting, but hey I have no problem talking about it, it's life and IBS suffers get on with it. It's life now, and I wish people were more aware of it and had more sympathy.
E-mail Vicky: [email protected]
The tale of...Louise (25 August 2006)
I'm 23 and have been suffering from IBS for four years. I have for the most part been suffering from diarrhea-predominant IBS, along with gas, bloating and painful stomach cramps every day. I take Imodium regularly just to be able to get on with life. I have done so much research around irritable bowel syndrome, desperate for an answer to this problem and so fed up with taking pills everyday.
I am so glad I came across this website, as it has brought up so many different treatments and opinions from real people suffering the same discomfort as me. It is so easy to think you're the only one out there sometimes, so it really helps to read other people's stories.
I have recently started taking Benefiber in tablet form and also Caltrate 600. Since taking these I have had considerably less frequent bowel movements, it doesn't make me constipated, but it does mean I'm not rushing to the loo every five minutes, which is really amazing. I do suffer a lot from excess gas from taking added fiber supplements, but hopefully this should settle down.
As well as trying out various supplements, I also visit a therapist who specializes in hypnotherapy and relaxation techniques. I believe my IBS started after a traumatic family event, as ever since I have suffered from terrible anxiety attacks which make my IBS worse. The therapy, however, has helped me to stay calm and control my anxiety, which I believe helps manage my IBS.
I have felt like on occasions IBS does make my life a complete misery, and I do get down about it, but I won't let it ruin my life. I have just graduated from university and I am determined to do well in my chosen career, with or without IBS. For everyone out there who suffers with diarrhea day after day, don't let it control you, don't let it get you down, I know it's hard, but there are ways to manage it. I think it helps just taking small steps, trying out what suits you. I believe this will eventually make a big difference, and lead to a more satisfying, quality life.
E-mail Louise: [email protected]
The tale of...Astar (23 September 2006)
I have been suffering with IBS for what seems like an eternity, and I have been trapped in my house for five years. Recently I decided that at 26 I should have a life and if I didn't start now, I would be like this forever, regardless. I have told all of my friends that the reason I don't go out of the house is not because I am a freak but because I am sick in the stomach, so if I can't go somewhere, I can't go and that's it. But the clincher is that, if I can go, I will, without the fear that I am going to end up in the 'embarrassing tales' section.
In the last month I have booked plane tickets to go and see my favorite rock band, a two-hour plane trip away in the city that is the biggest metropolis in this hemisphere. I am so scared. I am so scared that I am panicking even thinking about doing it, but I am going to do it.
I have planned to go for a five-hour car trip with my hubby and three kids for the first time ever. I am certain I will have diarrhea and I am sure that there will be a mad dash out into the bush clutching toilet paper, or a traffic jam in which I will wish I had installed a port-a-potty in the back seat. But I am going to go. Hell, I might even buy a port-a-potty and put curtains up in the back of the car in preparation. But I refuse to be embarrassed.
You know why? Because I didn't make this choice to have this thing, but for five years I have made the choice to be so embarrassed about it that I have let it hold me back. Not anymore. I am going to do all this and if there are any problems well too bad. IBS is not running my life anymore.