Posted 18 June 2001 - 09:58 PM
I have been diagnosed with IBS-C (cronic constipation IBS) roughly 9 yearsago. This all started at the age of 17. My life has never been the samesince.Every day of my life, I am severley constipated. I heard about Zelnorm afew years ago and have been following the news around this drug on theinternet.I am 26 years old, and have been living at home with my parents my wholelife. I only work part time, because most of the time I am so sick to mystomach I cannot work.Please let me give you a description of how I live my life on a weeklybasis.On Sunday evening before bed, I must take atleast 5 tablespoons ofPeridiem with Sena, usually followed by either 3 to 4 Ducolax tablets.Sometimes I switch between Ducolax and Senakot tablets because I build atolerance to the Ducolax. I also find that the Ducolax in large doses,over the years has caused my heart to race (which recently put me in thehospitial more on that further into my letter).I usually awake early now Monday morning deadly sick to my stomach. Ihave terrible cramps while sleeping which causes bad nightmares andsweating as I sleep. Finally I awake early in the morning on Monday withthe worst pains in my stomach I have ever had. I am finally able to go tothe bathroom, which is then followed by severe dirareha from all of thelaxatives I took the night before. Throughout the day on Monday I startto feel a little better because I finally cleaned my body out, but everylittle amount of food I eat for the rest of the day usually comes rightout of body, which is still posioned from all the laxative products.Monday night I go to sleep, I worry about the food I ate during the daybecause I know I will not be able to go to the bathroom on Tuesdaymorning. I cannot take lots of laxatives before I go to sleep on Mondaynight, because I have to work my part time job for the next 3 days.During the whole day Tuesday I feel slightly crampy and slight pains in mystomach. Then I eat lunch. I try to eat right to help my IBS, but itsfutual. Nothing I eat will come out easily. If I eat the correct foodslike well done vegetables, high fiber, salads, rasins, all of this stuffwill make me go the the bathroom just a little. This is only when I eatvery large quanties and then I have to suffer with EXTREME GAS PAINS andstabbing pains on my stomach. When I go to sleep on Tuesday night, againI cannot take laxatives products otherwise I will be to sick to go towork.Wednesday arrives. By this time I am very sick to my stomach. All of thefood I ate the day before that is supposed to help me go, is just sittingin my stomach. The gas pains are terrible. I go to work sick. I amafraid to eat, so I basically starve myself. Usually drinking chickenbroth, and having a can of soda for some energy. The time I get home Iam so hungry I must eat. Now already full of gas and sick, I turn aroundand eat food that will not cause gas, but will now make me even MORECONSTIPATED and sicker. Usually something plain like a bagel or a fewslices of pizza. This is the worst for me, and even constipates mefurther.Thursday arrives. My last day of the work week thank god. On Thursday Ifeel like I am going to die. Two days of food stuck in my body. UsuallyI try a suppositorie during the week that I cannot take laxatives. I trythese desperatly throughout the 3 days I cannot take laxatives. Sometimesup to 8 of them a day. They barely help, and the straining and forcingtrying to go the bathroom, has given me very painful hemroids. When Iarrive home from work Thursday night. I usually eat whatever I want, eventhough I feel so sick already by this 3rd day without going to thebathroom. I eat whatever I want, because I am so disgusted, and relizethat no matter what I eat I still will be constipated. Before bed onThursday I take another mix of very harsh and powerful laxatives. Usuallyby this time I take up to 5 tablespoons of Peridiem with Sena, followed byeither 4 Ducolax laxatives or up to 8 Senakot tablets. Again I cannotsleep because of the pains in my stomach. Usually waking in the middle ofthe night not knowing if I am going to throw-up or go to the bathroom.Friday morning I don't have to work. I spend the morning hours on thetoliet, once I go to the bathroom again it's followed by severe dirarehafrom all of the laxatives I took before going to sleep. During the dayFriday I worry about what I can eat. I usually take laxatives throughoutFriday through Monday, making sure I clean my body out before going towork Tuesday again. Because remember I have to make through Tuesday toThursday without any laxative help. I have tried laxatives during thedays I had to work. Only in severe cases when I was very constipated. Iwould go into to work SO SICK. Just ready to die, going to the bathroomon and off just ripping my insides out. I usually spend my Fridaythrough Monday at home. Because I just feel to sick to go out because ofthe laxatives.If I dont take them I will not go, and then in-turn be even more sickerthen If I were able to go, but still on laxatives.Thats how I spend every week of my life, for the last 9 years. Now let metell you I was always healthy as a child up to the age of 17. Always hadlots of friends, was very happy, was brought up by 2 very good caringparents, who I still live with. I developed another medical conditioncalled IC at the age of 17. Six months later IBS followed.First let me explain IC is a cronic irriatation of the bladder. Thebladder lining in people with my condition is thin, and usually worn withsmall holes or tears in it. When you bladder feels with urine, you get aterrible burning sensation, usually have frequent and urgent trips to thebathroom. You also have lots of presure on your bladder which is verypainful.Now what does this have to DO with IBS? Well IBS is a side effect of thisdisease, in fact 90% of people who have IC "Interistial Cystitis" havesome form of IBS.The only way to find out if a person has IC, is to go into the hospitialand have a doctor actually look at the bladder lining with a cystoscope.He then also fills the bladder to stretch it to see the holes and tears inthe lining. Well I had that done over 6 years ago, and finally thedoctors knew what I had. There is no cure for this, I live with thismiserable problem every day. I take the only ORAL medication on themarket for this problem. It is supposed to build up the lining in yourbladder over years of use, and in-turn you are supposed to have lesssymptons. Well I have been on the medication for 3 years and I would sayit has helped me about 60%.Back to the IBS, and why I am begging you to please help me get the drugZelnorm. When I am constipated from my IBS it makes me bladder condtion100 times worse. The gas pains in my stomach put preasure on my bladder,which in turns causes me to have to pee constantly, and I get severeburning pains in my bladder.When I am cleaned out from the laxatives my bladder symptons subside, andthere only mild, and much easier to deal with. I have talked to mydoctors before and they told me that my bladder condtion will BE WORSEwhen constipated because it will put presure on your bladder, and it isnot UN-COMMON to have much worse bladder pain when constipated.Now imagine those 3 days a week were I cannot take the laxatives. Notonly do I have severe gas pains, and just feel plain horrible from beingconstipated, but now I have the added pain of my bladder which again getsMUCH MUCH worse when I am constipated.PLEASE HELP ME GET ZELNORM. I need this drug. If it helps myconstipation it will in-turn help my bladder. Like I said if I am cleanedout and not constiapted my bladder symptons ARE MUCH MUCH less, and arebareable. I know there will not be a cure for my bladder conditionanytime soon, but if I could just get the IBS-C disease under control, Iwould feel MUCH better in general.After 9 years of being sick with both of these diseases, I was admitted tothe Emergency Room on a Sunday night. Never before have I ever been inthe hospitial except for the explorotory surgery (when they had to look atmy bladder with a cystoscope).I had a racing heart. When I was admitted my heart rate was 180 beats perminute. I was also severly dehydrated which I know suspect was from mycronic laxative abuse, which is needed to live a somewhat normal life. Iwill given an IV and my heart rate was brought back down to normal. Fourhours later I was sent home. I do not have any medical coverage, so myparents had to help me pay for all the bills. Later in the week I wentto a caralogist, had a complete exam, and 3 weeks later I was given theresults, that everthing was normal and my heart was fine.I beleive I had a small nervous break-down of some sort. After beingsick for so long, I have been severly depressed. In the last year I havebeen thinking of suicide. I am a mentally healthy person. I have neverhad problems growing up. Never did drugs, always had lots of friends butI cant live like this anymore.All of my friends that are around the same age as me (26 years old) areall moving on, most of them are married and a few already have children.I am going no where in life. I avoid social situtations because I feellike plan #### most of the time. If I am constipated, then my bladder tois killing me in pain. Most of my friends still have lots of socialparties, are still very nice, and yet they don't understand why I avoidthem most of the time. Or come up with some reason why I cannot make itto there outtings.I cannot even consider having a relationship with someone. Even though Ilook completely normal, no one knows the pain I have to deal with it.The last time I dated was in High-School at the age of 17. That was thelast time. After that I became sick. My life is lonely and boring.I am just existing in the state I am currently in. I cannot ignore myhealth problems, because they are always there. I always feel them, andthey alaways make me sick. If I could get this CRONIC-CONSTIAPTION undercontrol with the new ZELNORM drug it would change my life.For one I would only have to deal with one medical problem (my bladder)Secondly when I am not constipated it helps so much with my bladdercondition. Please I beg you to somehow get me on this medication. Iam throwing away the best years of my life. I have stopped living at theage of 17. I am now 26 years old, and still cannot have a life.I don't care if I am risking my health with your new medication. Rightnow the quality of my life is 0. It is worth the risk for me. The onlything that keeps me wanting to live, is love for animals. They are myhobby. I maintain tropical fish, reptiles, and my dogs. There the onlything I have in my life that keeps me wanting to live.[This message has been edited by TheDude0306 (edited 06-18-2001).][This message has been edited by TheDude0306 (edited 06-18-2001).]
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I cried all the way through it. Please hang in there. You sound like such a nice person and the world is blessed with your presence. I don't know what I can say to make things better for you but please know that there are many that do care about you and what happens to you! I hope you sent your story to the FDA. I wrote the other day but am way to frustrated today to write again. Perhaps tomorrow. I would like to recommend a few things for you to try that have helped me a lot...even though we all know that we have to keep changing the things we try because our bodies get use to what we give them.If you can, try that ezekial bread...it comes in different varieties. I like the raisin. Eat at least 2 slices in the morning and drink something warm..whatever you prefer. After drinking the warm liquid, drink a full glass of cool water. At night, before bed take 2-3 LARGE tablespoons of a good tasting liquid called KONDRAMUL (about $10 a bottle) can be hard to find but Walmart can order it, I get mine from the drug department in Albertson's market. It can take a few day's to get going. You'll KNOW if you overdo on it 
I know, I know..but you MUST drink as much water as you can possibly drink while you're awake! Sometimes I switch between Perdiem and Kondramul but I am rarely sick to my stomach now. There is a product (by perscription) called Miralax and it has helped some on this board. It's supposedly safe to take for long periods even though it say's only 2 weeks (I believe)...you need to get your poor body balanced so you can maybe go to the bathroom each day...I almost have that down with my little schedual. Consider asking your doctor for an antidepressant. It might help the IBS and also make you feel better. And last of all here's a great big HUG just cause you need one 
