I have had IBS for 15 years, and I have been to the doctor many times looking for help! My doctor told me to take Citrucel three times a day, but that was much too much and I had problems with going to the bathroom too often. Then I read about taking an antibiotic - I tried that and it did not help.
I was told by a friend that she heard that eliminating glucose sometimes helps. Well I have not had glucose since 17 July and today is 2 September, and not one IBS attack. I am thrilled and I can't believe my doctor did not know this. I want to scream - I suffered for 15 years and all I had to do is eliminate glucose. I am not saying it is easy to do this but I can live my life now without constant pain.
The tale of...Rebecca (24 October 2008)
I submitted a sad tale in the summer when I was going through a particularly low point, and although I am still unable to work (I've been off work for all of 2008 so far) I wanted to let people know that if you stamp your feet hard enough, doctors will help you! I've undergone every test known to man for bowel problems, and the result was that there was nothing 'wrong', so I was diagnosed with IBS. But I was very ill (the pain was more of a problem than any 'toilet' symptoms - some days, I didn't get out of bed!) so asked for help to get some of my life back.
I've since been referred to a pain management specialist, who changed my medication to help control the pain and improve the constipation, and he referred me on to a psychiatrist. So far, the psychiatrist has given me more help than anyone else! I'm on anti-depressants and anti-epilepsy medication now, thanks to him, which sounds very odd, but it is working to control the pain.
I'm having hypnotherapy (fabulous - I'd recommend it to anyone even without IBS - it's incredibly relaxing!), cognitive behavioral therapy and micro-current therapy, which heals on a cellular level. There is help out there if you look hard enough for it and have doctors who can open the right doors for you.
Update on Rebecca...
I thought I'd give you an update on my progress and let you all know that I've discovered something incredibly simple that's an amazing help! After 15 months off work due to IBS, I'm finally back at work in a new job (I couldn't think of much worse than being on my feet in a lab all day!) working in regulatory affairs in a pharmaceutical company. I'm just at the end of my sixth week of full-time working, although I have been back at work for several months now.
One of the things that has helped me most with sitting at a desk all day is a foam wedge...it's just a wedge-shaped cushion to put on your chair (or car seat, or wherever) which encourages you to sit straight...and as a result, you don't hunch over and squash your tummy. I hadn't realized how much the wedge had helped until I lent it to a pregnant friend, and suffered serious IBS pain and bloating on the days I didn't have it.
I wouldn't be without it now - it has really changed the way I cope with being at work, and I'd recommend it to anyone who suffers with IBS bloating and pain. I hope this discovery helps other people as much as it has helped me. I'd also like to add a voice of praise for the IBS audio program 100 - it is fantastic! Thanks for running this website - it's great to have a forum to share hints and tips for coping!
After 56 years of trying everything, including psyllium, bran cereals, and laxatives occasionally, I am cured! This past spring I saw a nutritionist for weight loss. One of her recommendations is a high fiber cereal (14 grams per serving). No surprise there. As well, when discussing fruit and antioxidants, she told me that prunes have the highest antioxidant value. So I tossed three to four prunes in my cereal and voila!
Along with a healthy diet including several fruits and veg daily I am cured of constipation. Along with irritable bowel I have a 'lazy esophagus', which made my digestion very slow. As long as I eat this daily I am fine. No gas, no more bloating, and efficient bowels. What a relief! I just add or subtract a prune or two when necessary.
I don't understand how IBS can be happy but hey...My mother told me that she pulled her hair out managing me as a baby and the IBS started right up, either diarrhea or constipation and exploding gas. I remember being in third grade, eight years old and sitting at my desk and suddenly getting the urge, and it was horrendous. I raised my hand to go to the bathroom and the teacher said no...she said your mom says you go to the bathroom too much, so that tells me you are playing in there instead of going to the bathroom.
When she said that I didn't even care who heard it, I was in so much pain I cannot tell you. I began to shake all over, then sweat, then start to cry uncontrollably. She then looked up when she heard me make a sound and her eyes got really huge. She said 'Oh my gosh, OK Vickie you can go to the bathroom this one time'. I ran so fast and when I got there, explosion to the nth degree. But I had to sit for a while, you never ever ever just do your thing and get right up like everyone else, you sit for a while because more is in there tucked away, waiting for you to leave and sit back down only to have to go again.
I also remember as a six year-old at my grandma's house with the constipation part. It was so bad that when I tried to have a movement it was too large and it split my rectum causing pretty good bleeding. When my mom came across me in the semi-private bathroom she saw my pain and got the old-fashioned douche bag out with a tube and put water in it to wash me out. What a relief...I don't have one of those things as I was told that it was not healthy for women to use them as they only cause infections, but hey, for flushing out the constipated bowel...oh man...relief in sight...
I had this all the time through school. Then at 24 I was told I had IBS. I kept complaining about pain in the upper right quadrant of my stomach, under the ribs there. It could have been my gallbladder as a few years ago it was taken out and I was told it was so huge and full of cholesterol stones.
I never watched what I ate, but it never seemed to matter. If you think about it, when you're eating well you still get it, or when you're upset sometimes you don't get it...I do think it has a mind of its own. I was told to take some psyllium, and I was told it would help both diarrhea and constipation, but it didn't. It swelled up in me and totally blocked me so bad I nearly had to go in to get unplugged. Never did that again.
I do realize though looking back (I'm now 57 years old with five kids) I learned to live with it. When I was busy I hardly noticed it as I was too concerned with my kids. Distraction is a great tool. I did have to have a bathroom or know where the bathrooms were everywhere I went. I do ask about that today, when someone says let's go for a walk in the forest I go 'Let's take some toilet paper'.
One time I didn't go to the bathroom for a while and I knew it was the constipation. I was hurting so bad I went in and an x-ray was done. The doctor says 'Oh no, you're blocked, impacted'. So he immediately gave me some Miralax or something like that. I went home and took some and it did clear me out, and I was told to take it daily, but after three days I had constant diarrhea.
I suffer mainly from constipation IBS but sometimes it switches. I noticed that some sufferers on this site were particularly worried about sharing bathrooms at home or university, and about lovers staying over. I was diagnosed at 15 and almost didn't go to uni because of it. In the end I did go, as I didn't want it to control my life and I'm glad I did as I've made great friends and have had good fun. However, I'm now 20 and still suffer from IBS, finding it particularly interferes with my romantic life. I try and make light of it but I actually cried reading this website as it was the first time I didn't feel like an utter freak. Thank you so much.
In return, I'd like to share some tips that I swear by in managing my IBS as I've found these help manage my fears, if not the illness itself.
For out and about: carry a small bottle of perfume at all times. I find that it gives me the confidence to leave the house as I know that if I have to go when I'm out that I can at least cover the smell. If your IBS is bad from nerves and stress, carrying Rescue Remedy with you can help to calm you down. I also carry Imodium just in case for peace of mind as well as Similase tablets which are digestive enzymes and can help you if you're eating out.
For your bathroom/uni bathroom: stating the obvious here: if there's a window, open it. If not, keep a wash bag in the bathroom that contains perfume or body sprays for when you have to go. Air freshener and matches can be good too but they are obvious as to what you were doing, so with a body spray you can say you were just 'freshening up'.
Keep a radio in the bathroom and/or run the taps or shower to cover the noise. The steam from hot water can also help eradicate the smell but remember you have to pay the gas and water bills! (I should also mention wasting water and the environment but let's be honest - when trying to cover up a spasmodic noise as you poo with people waiting outside, the last thing you care about is if you are wasting water, no offense to being green.)
Keep batteries for the radio in your wash bag in case it runs out. I also find having music from the radio on can calm you down or distract you from the embarrassment and can also be a great reason for not replying to impatient house mates who are knocking on the door unable to understand what you are doing for so long. You can't reply if you can't hear them!
This next one depends on how bad your IBS is, but I find timing toilet trips with showers, baths, moisturizing, brushing teeth, reapplying or removing make-up, cleaning the bathroom etc can also be good as it gives you a reason to be in there so long. Citrus bleach is quite good for covering up the smell and for keeping the toilet clean of course. Make sure you keep toilet wipes and a loo brush at hand too and offer to take the bathroom cleaning job on the rota.
Keep a small towel, flannel and spare pair of undies/sexy undies in your wash bag so you can have a quick wash should you have to do a number two when there is a lover staying over. IBS continuously reeks havoc on my sex life as I'm so embarrassed I smell all the time from the constant bloating and irregular toilet trips. I find the perfume helps here also.
In the bedroom: light candles to help you relax with said lover and to help dissolve any smells. Incense is also great. Duvets can trap the smell quite well if you are bloated, so just say you're cold. (Although I normally avoid sexy time when feeling this way.) Dim the lights and go for underwear or nightwear that makes you feel comfortable and also sexy and that doesn't in any way make you feel like an IBS sufferer. If you really aren't comfortable consider if you should send them home and wait for someone you do feel comfortable with.
I have to be honest though and say that although I feel extremely comfortable with my boyfriend and have told him about my IBS, I can never really bring myself to explain all the embarrassing ins and outs of it. However, he is great as he never makes any comment when I go to the bathroom for half an hour when I said I just wanted to pee and knows to leave me alone when it's needed. He is actually one of my house mates and although living with a boyfriend, three other student house mates and IBS all at once is scary, these little tricks help me get by.
Staying away from home: this is the thing I dread the most in life as my stomach is worse at morning and night. Normally this is OK as once you are in the privacy of your own home you can let it all out and relax. But what do you do when you're staying at someone else's?
I take a small wash bag with spare undies, flannel, towel, shower gel, perfume, spray and my trusty pocket radio and batteries. If questioned I normally say 'Oh I was in such a rush packing I even grabbed the bathroom radio! What a nutter I am! Oh well, I may as well use it as it's here!' Or you could try 'You said to make myself at home!'. I run taps and try and time toilet trips with a shower. So when I feel the need to go, I might say to the host: 'Do you mind if I have a shower or bath? I know I had one earlier but I feel like after all that sightseeing/partying/walking I need another or it would be nice to unwind'.
Try and be honest about what you can't eat even if it will hurt the host's feelings as it will hurt your gut a lot more if you have an intolerance. If worst comes to the worst, fake feeling faint or something and say you can't eat, or that you'd like to cook up something as a thank you to them.
Tips in general: I find peppermint tea is great for digestion, particularly the Twinings brand with fennel. I take Similase tablets (mentioned above) with most meals to help me digest my food. Crystals, hot water bottles, heat patches and hot water can also help quite a lot for cramps and constipation and particularly for period pains which seem to link to IBS and vice versa.
Hypnosis can help if you are open to it. It's cured my fear of flying so I might try it for IBS. I've found holistic therapy immensely helpful as crystals, massages, reflexology etc relax me and it's someone I can talk to about how I am feeling.
Lying: I've also found that in the back of your mind somewhere you need to have a stack of white lies that you can pull out at a second's notice - ie: when a non-sufferer is being nosy - to cover what you were doing for so long, where you have been, why you're late, why you want to leave, why you changed your appearance etc...I am unfortunately a master at lying now but it goes hand-in-hand with covering up this embarrassing illness.
Try: 'I had to make a phone call, was freshening up, there was a long queue, my brother just rang, I was stuck in traffic, I slept through the alarm, I couldn't find my keys, I had to re-apply make-up, I've got a headache, I've got work to do' etc...
My biggest problems now are bad sweating and insomnia which I fear may be linked to my IBS or a food intolerance, and sleep deprivation seems to make my IBS worse. Also, the fact that my fear of IBS is 10 times worse than the illness itself. I've become quite reclusive again recently which is a shame as I was doing quite well. I am very anxious when I have to leave the house and worry about getting a job when I finish my degree in July.
My fear is more disabling than my symptoms now. In my case, I think a fair amount of it may actually be in my head simply because sometimes I feel great but then I only have to think/worry for one second about having an attack and within minutes I appear pregnant and ready for an attack. It's like I have the power to bloat my own stomach just by thinking it. It's not the superpower I wanted!
It's great to know I'm not the only person who is dealing with all this. I hope these tips will help someone else like me. Now all I have to do is to try and explain to my boyfriend's crazy outdoorsy family that no I can't go camping and hiking with them on the beaches and mountains of south Wales, but if they'd like to put me up nearby in an en-suite hotel room while they do, that would be just fine!