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The tale of...Priscilla (October 2006)

I wrote my story a few months ago, talking about my IBS-C and how awful it had been. I had even lost a considerable amount of weight with it and was constantly using laxatives and suppositories and anything else they could throw my way.

Following on from this my doctor prescribed me a brand of anti-depressants that he had heard had been successful with other patients. They were a member of the Prozac family. However, the outcome of taking this medication was that I could barely get out of bed because it killed my enthusiasm for life. The bubbly girl that I usually am despite often crying because of the pain of constipation and bloating was completely sapped of all life.

I was also awaiting an appointment with a hospital in London for Biofeedback and a transit study. However, the appointment was for late October which seemed like a lifetime away. I instead went to my local GP who is a very understanding man (I finally found one who is determined to help not brush me aside). Anyway he was concerned about my weight loss and decided to write to the hospital where I would be going for biofeedback training and the transit study.

This letter worked. I was put on the waiting list and I received a call from the hospital to tell me that they had an appointment early in September. I was required not to use laxatives or anything of the kind for six days before the transit study. I was about fit to burst because despite going to the toilet in bits I was not able to clear everything. Or at least that is what I thought.

The study was very positive because it showed that my bowel was emptying like it should be with the recommended amount, but the problem was that I had to go a lot to clear it out whereas other people would be able to do this in one go...and therefore I was having the problem with bloating and feeling constipated all the time!

Now it suddenly dawned on me that before IBS I never really paid much attention to the number of times I went to the toilet, and therefore it was only when I originally got IBS-D that this normal bodily function became such an important part of my life. For that I was treated with anti-depressants and when I came off them I was then faced with the constipation because again my body was doing something different.

Anyway the specialist nurse was so nice - she spoke to me about my eating habits, my exercise habits and also what treatments I had had in the past. It was very comprehensive, probably the most comprehensive consultation I have ever had. Then she told me about Biofeedback training. It is a process of retraining the muscles that we use to go to the toilet to do their job properly again.

Part of the way that she investigated to see how the muscles are working was to get me to lie down, and she inserted a balloon into my rectum. Once it was inflated she asked me to try to push it out. I was unable to do this and she stopped me and told me that I had fallen into bad habits due to all my problems with the IBS.

She made me put my hands on my waist and feel the muscles that I am supposed to use for going to the toilet. They are called the brace muscles and in order to use them properly we have to expand our waist and push from our waist! Now it might seem stupid that I wouldn't know this, but the nurse explained to me that because we learn to use these muscles instinctively as babies, when they don't work properly we are not aware of what muscles do what because we have never had to be aware of them before.

Following this test the nurse gave me some exercises that I have to do every day - sitting on the toilet 30 minutes after breakfast for 10 minutes and training the muscles using this pushing technique. It doesn't necessarily mean that you go to the toilet but it is about getting the bowel into a routine of emptying.

She told me that it will take anything up to six months to really get to see any positive changes, but in that time I will see her a further three times. On top of that she told me that she does not want me to use laxatives at all. If anything I am only allowed to use suppositories if it is an emergency.

It has been about three weeks since my appointment and I have seen some serious improvement already. I have even been away on holiday and I had eight days pain-free out of the total 10 which is a miracle for me. My body has already started to get into a routine of going first thing in the morning...and although it is not perfect it is a start which I am very positive about.

Also while I was on holiday I was able to completely relax and take time for myself so that helped my body as well. I was less afraid of food to eat and subsequently I was able to put on half a stone. It is not all light at the end of the tunnel because I still swell and get a lot of gas and bloating, but I am pretty sure that it is due to some foods that I am eating. Therefore I am going back to the dietician to continue the elimination diet.

One piece of news is the importance of testing intolerance to tap water. Originally when I went to see the dietician she told me to stop drinking anything but bottled water, and this included not drinking tea unless it was with bottled water and also not using tap water in cooking. I thought 'What?' Anyway I went along with it thinking this has got to be crazy, but it was not nonsense.

In order to test the water I was required to drink water directly from the tap in large amounts over two days, but after 30 minutes of drinking the water I was in agony. This even included filtered water. I have now cut out tap water in everything. I don't drink tea at work and I bring water with me from home. Also I never use tap water in cooking, and I never have ice cubes in my drinks when I am out.

I tested this theory when I was away on holiday. After two days of drinking drinks with ice cubes I suffered bloating, gas and pain. After I cut out the ice cubes this went away! Now I am not sure why the tap water does this, but the only conclusion that I can come to is that it might be trace chemicals in the water upsetting the balance. I spoke to my dietician and she said that one other girl she treated found tap water to be one of the triggers - therefore it might be rare but it does happen.

I am determined to find out what the other triggers are. I think dairy (in particular cheese) is an irritant and also whole meal breads but I am yet to fully experiment. I have read two books recommended to me by people who read my original story on IBS Tales and e-mailed me, called Eating for IBS and The First Year - IBS. These books offer very good advice on diet and alternative therapies.

I am also thinking of doing acupuncture. I have discovered that it can now be done on the NHS. I can make one saving on this, because I have made huge investments into alternative therapies.

I am now more positive about everything. Yes I still am not right and I might never be, but with some investment and investigation and the support of my family and friends I am almost back to the totally bubbly girl that I was before I got IBS five years ago. IBS has cheated me of five years of my 20s and I want to make sure that I do not lose the next five to IBS.

I would also like to say a massive thank you to you for setting up IBS Tales because it has been a great lifeline for me. It has meant that people have shared their experiences with me and written to me from many different parts of the world offering advice, and it has been fantastic.

As someone wrote to me: 'Please all those out there with IBS don't give up - never give up!' Find a good doctor and it doesn't matter if you have to go every week for months, it can pay off. Don't settle for being fobbed off by doctors either, especially in hospitals - if you think you are being treated badly by a doctor complain and see someone else, and if you have to go to a different hospital do it. I did this and it is the reason that I was given the option to have biofeedback training.

They are paid to help us who are sick and they have no right to treat us badly, and we have no reason to accept it either. It took me five years but I eventually found an understanding GP and subsequently found a good gastroenterologist through him as well. This story is a far cry from the original one that I wrote as desperate 25 year-old with IBS-C, but I wanted to share it with you and maybe I can help some others out there with this horrid affliction.

Update on Priscilla...

In the last two months my symptoms have been really up and down. I am still doing the exercises that they told me to do at therapy, but I have also found some things that have really helped, and they were all available at Holland and Barrett. I have tried them as a trial for a week, and after one week my symptoms turned around. I have now gone 12 days with no symptoms and no constipation. This is the longest stint now within the six years I have ever had.

Part of me is terrified that it will end, but I am just hoping that it doesn't. I am counting every day and that sounds weird, but like you will know I having suffered so long - you see every day as a triumph, and although my friends think that I am crazy they respect my constant count-up of days and actually laugh when I look so excited about it.

My boyfriend says that I have changed emotionally and in my attitude to everything - I can completely understand where he is coming from because I can be very distracted and unhappy when the IBS is bad. Now I am singing in the mornings and smiling loads at work even when work gets hectic. It is amazing that it can have such an effect on your mood but it does.

Anyway, today has been my twelfth day with no symptoms, and I mean no bloating, no pain, no gas, and no constipation, and I am doing it without any medical drugs. My regime is all herbal and natural. First thing in the morning I take two strawberry chewable acidophilus tablets before I eat breakfast (they are from Holland and Barrett). Along with that I take one peppermint capsule - they are from Boots because they do not repeat as much as others I have tried. I also take a multivitamin from Holland and Barrett. They are all free of any additives, and because I am on the elimination diet at the same time they are free from possible triggers such as lactose etc.

Then at night I take one Aloe Vera Colon Cleanse high strength tablet. It took seven days for all this stuff to kick in, and for that week I continued to use suppositories, but after the seventh day I had a breakthrough. I now suffer no constipation and I have no real symptoms of IBS, even in the run up to my period. I continue to do the exercises that I was told to do by the therapist at the hospital where I do my biofeedback training. I have also spoken to her and showed her what I take and she saw no problem with any of it because it is all natural.

Further to this I am also on the elimination diet to try and determine the foods that might trigger an attack. This has been a positive step for me also. I know that it might seem a little strange because I know everyone tries the herbal supplements, but I stumbled over these because I thought what harm could it do and I am having luck with it. I have also found that since I have been on the diet and also on the tablets even my acne has cleared up and I have been struggling with it for months. My dietician thinks that it could be a food allergy that has contributed to some of my problems and therefore the elimination diet is the best way to discover what it could be.

I am counting every day as a positive step and I just wanted to share my little bit of success with you as your website has been such a good help to me when I have been very ill. That is my update on my story.

E-mail Priscilla: [email protected]


The tale of...W (9 March 2007)

I've chosen to put my story in the happy tales section even though I am far from happy. However, I have recently been taking magnesium supplements and have found that it has helped a bit. I suffer from constipation-dominated IBS with extreme bloating, pain and wind. I've been taking magnesium for about three weeks now and I have found that it is a little easier to go in the mornings.

Before, I had to drink lots of warm water and slowly eat cereal with warm soya milk, then sit on the toilet for 45 minutes straining. Now I find that when I try going in the morning it's a teeny weeny bit easier. I go without straining at first but it stops suddenly mid-bowel movement, then I return to feeling awfully constipated. But at least I manage to get some of the waste out which helps towards me feeling less (excuse the pun) crap through the day.

I'm going to try 'cleaning' up my diet too as I found that cutting out wheat, dairy, and processed or fried foods helped me a little before. I reckon if I stop being so greedy and do the diet in combination with taking the magnesium I may feel a whole lot better.


The tale of...Sophie (2 April 2007)

I am thrilled to be able to write this. I have suffered from constipation for what seems like my whole life - at least the last 15 years. I was always told to eat more fiber by multiple doctors, which I did regularly. It helped a little, but not completely.

It was not until recently, after a particularly frustrating, painful, and embarrassing span of constipation, that I dug deeper for more information. I knew there had to be some reason I was not 'normal' as I am a very healthy person otherwise. I read somewhere that milk can have a detrimental effect on some people's GI systems, so I cut milk out of my diet. After a day I was already feeling better, and three weeks later, I'm still regular. No more hard and painful stools, no more straining, no more worry.

I have also heard that gluten can be very detrimental to you if you have celiac disease. So if this dairy-free doesn't work for me, that is next on my list. I feel like a new person already. I hope you can find your peace!

E-mail Sophie: [email protected]


The tale of...Jennifer (23 June 2007)

I have suffered from IBS with constipation for three years now. I had no bowel problems until just after I graduated high school. Growing up, I never really had any trouble unless I was staying at a friend's house or on vacation somewhere. I usually wouldn't have a bowel movement for the first few days, but I would eventually and I never had any pain - I just didn't go for a while.

This all changed out of nowhere. I don't think there was anything that made my IBS start. Although, my periods did become more painful around the same time. One day I just realized I hadn't gone to the bathroom in five days! I usually would go every day or every other day. For about the first two weeks I just took some Correctol and I was OK for a few days, and then I was constipated again.

I went to the family doctor and she just told me to take stool softeners, but they didn't help much at all. I was really miserable at this point. I was going to start college in about a month and I couldn't even enjoy my summer.

I was able to get an appointment with the gastroenterologist that my mom sees (she has Crohn's disease). He almost immediately diagnosed me with IBS after a few questions and gave me Zelnorm to take. I did have to schedule a sigmoidoscopy to rule out Crohn's disease since my mom has it. It wasn't pleasant, but everything looked normal.

Well, the Zelnorm worked great from the start. I felt pretty normal for about eight months with occasional bloating and gas, but noting too bad. I was even able to cut back on the Zelnorm to once every other day.

But the next summer it started to get bad again, so I was taking the Zelnorm every day. About this time I also started to date my current boyfriend. He lived about an hour away from me, so I would spend weekends at his house. The weekends were terrible for my stomach. I was almost never able to have a bowel movement when I was there and the pain and cramps were horrible. This went on for about a year and I eventually started taking laxatives every weekend, just so I wasn't in pain the whole time I saw my boyfriend.

Last summer, the Zelnorm stopped helping me. I called my doctor and he told me to take it twice a day. This helped about 25% of the time. But every time I ate something I would have cramps unless I went to the bathroom after I ate. I had to get another appointment because I was feeling worse than ever! He prescribed Amitiza to be taken once a day, along with Zelnorm once a day. He also suggested probiotics.

The Amitiza and Zelnorm actually worked, but they would sometimes give me diarrhea so I didn't take them if I was eating out somewhere. The probiotics did make me feel less bloated, but I only took them for a month because they were pretty expensive.

I graduated community college last fall and moved in with my boyfriend. Since I'm not in school anymore, my mom's health insurance no longer covers me. This is a big problem because my two prescriptions would cost about $200 a month after the discount (my boyfriend's mom works at the pharmacy so we get her discount of 20% off). My boyfriend suggested I try to stop taking them and see what happens, but I was so scared I would be in pain and never be able to poop! Instead, we bought some stool softeners which don't cost much, and they actually worked this time!

I've been taking the stool softeners for about six months and I'm doing pretty good. I still have some bad days, but I've only had to resort to taking a laxative once in six months, so that's pretty good! I also try to eat a lot of fiber and I avoid a lot of dairy because I know that makes the cramping worse. My stomach still feels bloated most days and I have a lot of gas, but overall I'm doing the best ever since my IBS first started. I still feel pretty limited in what I can do. For example, if I wanted to travel I would be very nervous that I would be in pain the whole time and not be able to have a bowel movement. I still worry that my IBS will get bad again, but for now I'm enjoying feeling good.

E-mail Jennifer: [email protected]


The tale of...Sian (7 August 2007)

I have been suffering with constant pain, diarrhea, constipation and rectal bleeding for the past two years. I have undergone so many tests including colonoscopy and sigmoidoscopy, both of which I was sedated for but boy did I feel everything! Not pleasant, and one was undertaken during a heatwave which didn't exactly make it comfortable, NHS air-con not being great!

After several visits to my GP (a lovely man, so understanding and helpful thank goodness) and to my consultant (again I am very lucky, a wonderful man who held my hand during one of the tests) and being prescribed Lactulose (gross), Fybogel, citalopram (an anti-depressant), Colofac and more I have finally had a diagnosis of IBS.

This has taken two years, and, as a 27 year-old young woman with a full-time job, is such a relief as now I can adapt my lifestyle and it can be treated correctly. Also I can now undergo surgery to deal with the anal fissures which have developed, these alone have caused me so much pain and distress, not to mention the stress and worry from it which has triggered the IBS.

I have had nearly six months off work on and off due to the debilitating nature of the condition. A lot of people fail to grasp just how awful an episode can be which I feel is so wrong, it's not just a case of needing the loo urgently etc, it's the physical and the mental nature of the condition that causes people so much distress.

My heart goes out to all sufferers whether mild or severe and to let them know I understand how you feel, it is very difficult and embarrassing to open up about your experiences to people and I just hope that everyone gets the support they need.

E-mail Sian: [email protected]

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