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

The tale of...Samantha (29 April 2008)

I am 19 years old and I was diagnosed with IBS about two weeks ago by a gastroenterologist. I have had symptoms from as young as I can remember, and when I was diagnosed I thought that IBS was no big deal and would just cure itself. After reading through the stories on IBS Tales I am most upset to find out that there is no miraculous cure.

I experience really bad stomach pains, bloating, and nausea, as well as bouts of constipation and diarrhea. What saddens me most is that I have a 14-month old son who I know is also going to have to suffer at the hands of this dreaded IBS because I never feel well enough to do anything with him. My poor partner has often had to miss work to take care of our son as I was feeling too poorly to get out of bed, but his boss got on his case and he almost lost his job. So now without his help during the day and him working long hours I find it very difficult to try to look after my son as well as cope with my symptoms.

Not to mention my period is due in a couple of days time and I am dead scared of it coming. I am in the worst pain to the point that I lay on the floor crippled over with my head in a bucket at the same time as looking after my son. Unfortunately my partner can't take any more time off work so I know I have to face this by myself for the first time ever. The painkiller Rafen 200 helps me a little during my period and the gastroenterologist recommended Buscopan as the only thing that may provide some relief. I am also seeing a specialist dietician in a few days time.

Hopefully I will find something that will work for me as I am scared I will lose my partner because of this IBS or be too scared to have more children. Unfortunately I never feel well enough to eat so I often don't cook dinner for my partner even though he comes home from work hungry and tired. I feel like such a burden on everyone and I just pray that something out there can help me.

I would really love to be able to talk to another sufferer as well as be there for them. So please feel free to contact me as I believe you will become my most valuable friend indeed. I hope that someday I will have a story to add to the happy tales section of this website and I sympathize with each and every one of you.

E-mail Samantha: [email protected]

The tale of...Trish (8 May 2008)

I was diagnosed with IBS in 2005, along with gastroparesis (delayed emptying of the stomach). I have not been able to hold a job because of this. I have occasional flare-ups, but that is not my worst symptom. It is the bloating. It is so severe I look extremely pregnant. I think I have bloating from the gastroparesis and IBS combined.

I keep praying that there will be a cure someday. I am 42 years old, and I have a college degree but I can't use it because I got sick, out of the blue. I was fine one day (never had any problems with stomach or bowels ever) and the next morning I was sick. I am convinced that it is stress-related because I had a breakdown right before I got sick. I think it is very unfair to have to live this way. I've tried all kinds of treatments, meds, herbs, but nothing works.

E-mail Trish: [email protected]

The tale of...Carole (August 2009)

I am almost 49 and I have just found this wonderful site. I am Carole and I live in Northern Ireland. I feel at the moment at the end of my tether with my IBS. I have IBS-D. I have had bowel problems for years, then about three or four years ago they escalated out of all control. (My GP thinks it was the stress of having my son, daughter (both teenagers) and husband diagnosed with genetic heart conditions.)

I went to my GP countless times and had various tests including the camera checking out my bowel. I tried various medications, but nothing. I took Imodium by the handful. Anyway, one night my husband had a heart attack and I was in the ambulance when I had to run to the loo. I realized he could have died and I could not be with him when he needed me.

So when he was a bit better I went to a different GP who was more understanding, gave me Lomotil and advised me to cut out coffee, gluten and tomatoes which I did. The IBS was still not under control although this helped a bit, but my life was being ruined by sudden bowel movements and needing a loo right now. I was unable to go out and everything I ate went straight through me, and I became weak and most awful to live with.

Another visit to another GP in the practice. I begged her to help as I now was suicidal. My life revolved round the loo and cramps with the occasional accident which is awful. My daughter was very ill and needed me. So the GP referred me to a dietician who I thought was a joke and told me to keep a symptom diary! But this was a revelation. I worked out my trigger foods before I had the dietician's appointment.

My problematic foods have been coffee, gluten and the worst of all fiber and stress. This was in May and I have done so well easing well down my Lomotil and going a day for the first time in years without any meds (although now I have to take a multivitamin).

Then yesterday and today have been awful and I have had an accident out of the blue, which has left me down and upset, and wanting to cancel our holiday. Hubby thinks it is because I am due a period and my IBS is always much worse then. Sorry for prattling on but it has helped me.

We have a holiday soon and the thought of how I was going to cope with the plane and coach etc made me think of cancelling, especially as I had to abandon my shopping last week and jump the queue to a disabled loo. That was taking after four Lomotil tablets! I got depressed and my hubby made an appointment with a GP and I saw him this morning. He had no idea that things were as bad, and is on a mission to get me as well as he can and if he can't he will send me to another specialist! Meanwhile he was mortified when I told him how bad things were and how I was going to cancel the holiday. He said he may use some temporary measures to help me have a good holiday, and then once I come back he will try and sort me out.

He has made some changes including changing some medications I was on for other things, and he will see me at the beginning of next week to see if I need something else. I now feel hopeful that I may be able to lead a fairly normal life and go out for meals, meet friends etc all without the fear of needing a loo right now. He feels there is something that my insides are reacting to but we have to find it. It could be something that is OK alone but when eaten with something else causes a reaction. He also wonders if I have an infected gut? So is treating me for this just in case to see! I am grateful to his patience and understanding and the fact that he is on a mission to help me. I will let you know how I get on.

Update on Carole...

Well when I last wrote I was in despair but my GP had given me hope, I thought. We were on the verge of going on holiday and I was ready to cancel, as I permanently need the loo at a moment's notice. My GP gave me some treatment on the Friday when I last got in touch with you.

Well the Saturday was not at all great and by Sunday I had a swollen abdomen and was in agony going to the loo - it felt worse than childbirth. I was so swollen I could only wear a nightie and I was unable to sit but had to lie in the fetal position in agony. On Monday I was marginally better. On Tuesday I had an appointment with the GP again, and by then I had given up and was suicidal and unable to walk alone. My long-suffering other half made my GP read my symptom diary and he clasped his hands and said he knew what was wrong. An examination proved I had a bowel blockage, probably caused by all the Lomotil to stop me having diarrhea.

I was sent home with some suppositories and Dulcolax (which many folk seem to hate). But what I had to do was cleanse my insides (to put it politely) and get rid of the blockage. I had to see the GP first thing the following morning as well. He said he had contemplated sending me to hospital as things were so bad, only we were going on holiday and he was adamant I was going. The procedure had to be repeated. I admit to taking Imodium to get me to my destination and a few times on holiday and for the journey home.

Since then I have gone as long as four days in a row without any medication to try and constipate myself (this is the longest period I have gone in years). Then I have had to take the meds if going out for the day. I have now gone a few days without any meds (although I needed quite a few Friday to Sunday). The result is that I am now constipated and have to go away tomorrow so may well cancel as I would not go out without meds. And I can't take them until I get action so to speak, as once my bowel starts it takes quite a few goes at short notice to the loo to settle. So when going on long journeys I sort of need meds.

So far I have been much better than I ever thought I could be but there is still much room for improvement. My husband and kids were amazed at how well I was on holiday, despite having my period which usually makes me much worse. My husband wonders was the improvement due to the copious amounts of water I drank, as I never drink much of anything at home! My diet is now confusing as I have been told so many things I don't know what to believe any more.

E-mail Carole: [email protected]

The tale of...Barbara (August 2009)

I have suffered from IBS for 35 years. It started after I had my son in 1974, and I am now 56 years old. I tried Lotronex the first time it was on the market and it made such a difference. My husband is self-employed and we pay our own health insurance which is now over $1,200 per month, and we pay half of of our prescriptions. When Lotronex was pulled off the market I was devastated. It was the only thing that helped and gave me somewhat of a normal life.

When going to stores or restaurants I would always ask first where the bathroom was because when I needed to use it I had to go then, and I wouldn't have time to ask where it was. Thank God my husband and now grown kids are understanding. Once the Lotronex came back out I started it again, but since Prometheus Labs bought the prescription they raised the price and it has gone up almost every month since to now being over $1,000 per month. I can no longer afford to take the medicine.

We have called the drug company many times just to be told they are working on trying to lower the price - but it continues to go up! I know someone who takes the medicine and only pays $10 per month with their insurance. My Amerihealth is a good plan too - I can't believe that another insurance plan will pick up over $1,000 a month if their patient pays only $10. The drug company don't care about us, just the almighty dollar. My GI has put me on Bentyl which I have been taking for only four days now, but so far it's not working. I have to take Imodium too, and then it will calm down.

The mornings are the worst time for me, and for some reason in the summer with the heat. After 35 years I still can't figure it out. If this Bentyl doesn't help within another week, I guess I'll have to try something else until Lotronex becomes affordable - if it ever does. I have to say it worked better the first time - this time I still have bad days and have to take Imodium in addition - but I'll take any help I can get.

I always take extra clothes with me, and keep a bucket in my car when traveling. I can't go to dinner with friends at the last minute because I have to have time to load up on the drugs - a sad way to have to live! The other stories I have read on this site do make me feel a little better knowing I'm not alone. Sometimes you think no-one knows what you are going through.

E-mail Barbara: [email protected]

The tale of...Carol (August 2009)

Since 1991 I have been prescribed every new medicine that hit the market. I thought that Nexium was the miracle drug for a year, then my life took a turn for the worst. My gastroenterologist suggested that I had to remove things that caused me stress so I quit my job of nine years and lost 75lbs. I am 56 and it is so hard to find employment that doesn't have stress issues, so I became a massage therapist.

Now I have GERD, IBS, hemorrhoids, diarrhea, and constipation. I can't stand for any length of time and I can't apply the pressure that my clients want. The townspeople were saying that I was smoking drugs because of the rapid weight loss and me quitting a well-paying job. I went into hiding so I wouldn't have to explain my weight loss and sagging skin. I was a 12 and now I am wearing sizes two and four.

The colonoscopy and EGD said that I have grade one internal hemorrhoids, diverticulosis, a small hiatal hernia, friability and erythema in the stomach and sent me home with Protonix, although I explained several times that the pill is not taking away the pain. Then they prescribed Librax, and in a week I felt less stressed, my pain is not as bad and my bathroom time is cut down. I'm still drowsy from the pill but I can tell it is going to give me my life back, where I can get out more, have energy and the will to eat.

My family don't know what I truly feel during the run of a day. I was asking God to take me on home so I won't hurt anymore and so people won't hear me complain. My self-esteem is so low that I pray that I can get my life back with this pill. I see myself as an attractive loving person.

E-mail Carol: [email protected]

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