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Hello everyone, I am really not a newbie here, forgot email and pw I registered with years ago, and have not been here in awhile. I have a few questions and maybe it would help to tell my circumstances.I am severe ibs-d. diagnosed in 1998. Was placed on Levbid and told to manage my stress and diet at the time. The Levbid worked for about 6 months and stopped working. So, my Dr. would have me on it for 6 months, off of it for 6 months,off and on again until I gave up trying to treat it a few years ago. I stopped going most places and am pretty much home-bound. Since that time, I have become depressed and suffer from panic and anxiety attacks. Social functions do not exsist for me. Recently I sought the advice of a therapist, who in turn, suggested I see a GI specialist.I am now on Xanax and Lexapro.I don't like taking the lexapro as it makes me feel weird. So, I often forget to take it. Which I know is a No no....but, I would rather take something that doesnt make me feel the way it does. My appointment is on 7/7 and I am very nervous about it. I had given up hope to ever be normal, now I want to treat this, but am afraid. I know I will have to have a scope done again and at this point, I have to deal with that. Are their any suggestions for medications? I have been out of the loop for so long, I don't know what to expect, is it unreaonable of me to ask for a specific medication or even suggest it? When I was diagnosed in 1998, I asked no questions, I was handed a pamplet and a precription and was told it was an idiopathic syndrome. I have done the research, since I was given little info at the time. What type of questions should I ask if any? I appreciate any information and will be checking back often. Thanks
 

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quote:Originally posted by Jadee:Hello everyone, I am really not a newbie here, forgot email and pw I registered with years ago, and have not been here in awhile. I have a few questions and maybe it would help to tell my circumstances.I am severe ibs-d. diagnosed in 1998. Was placed on Levbid and told to manage my stress and diet at the time. The Levbid worked for about 6 months and stopped working. So, my Dr. would have me on it for 6 months, off of it for 6 months,off and on again until I gave up trying to treat it a few years ago. I stopped going most places and am pretty much home-bound. Since that time, I have become depressed and suffer from panic and anxiety attacks. Social functions do not exsist for me. Recently I sought the advice of a therapist, who in turn, suggested I see a GI specialist.I am now on Xanax and Lexapro.I don't like taking the lexapro as it makes me feel weird. So, I often forget to take it. Which I know is a No no....but, I would rather take something that doesnt make me feel the way it does. My appointment is on 7/7 and I am very nervous about it. I had given up hope to ever be normal, now I want to treat this, but am afraid. I know I will have to have a scope done again and at this point, I have to deal with that. Are their any suggestions for medications? I have been out of the loop for so long, I don't know what to expect, is it unreaonable of me to ask for a specific medication or even suggest it? When I was diagnosed in 1998, I asked no questions, I was handed a pamplet and a precription and was told it was an idiopathic syndrome. I have done the research, since I was given little info at the time. What type of questions should I ask if any? I appreciate any information and will be checking back often. Thanks
Hi, I am Sharell and I really can relate to your suffering. I have been home bound for nearly 3 years now. Getting to your question, I have been taking Celexa. It is fantastic. It helps with the panic attacks and helps to calm my spasms. All together I am surviving on Celexa, Zelnorm and Lomotil. That seems to work for me most of the time. When the attacks are really bad though, all bets are off.As for what to ask, My doctor has me on a very strick diet, does not recommend for me to work due to stress, has me see him monthly or sooner depending on how I feel, keeps up with all new information regarding IBS and informs me of his findings, watches my weight very closely and has me see a GI specialist. I would say that if your doctor is not keeping close track of you, find another. My doctor says that though it is not life threatening, you can develope serious complications such as malnutrition or have low iron and things of that nature.
 

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quote:Originally posted by Brett Sr.:Zelnorm and Lomotil? One is for C and one is for D. What is his reasoning for giving you both?
I have D and severe spasms so I need the Lomotil, but, when I have to take Lomotil too often, I develope the C and bloating. So, by taking both, I have found that I have normal bowel habits, no pain and no bloating. It is the perfect combination for me.
 

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Hi again, I read in a different post that you had your gallbladder removed. So I'm assuming the first couple things you tried were calcium supplements or Questran. Have you and did they not work for you? They seem to be the 2 things that work best for people in your situation.
 

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quote:Originally posted by Brett Sr.:Hi again, I read in a different post that you had your gallbladder removed. So I'm assuming the first couple things you tried were calcium supplements or Questran. Have you and did they not work for you? They seem to be the 2 things that work best for people in your situation.
Yes, I tried those with no success. I have been looking over my medical Hx and found that really, I have had IBS symptoms since around 12. I also found that my father has it as well.I would have attacks during menses and then everything was back to normal after unless there was something stressful happening.Then, when I developed gallstones, that was when it went off the chart. I suffered for 6 months before being diagnosed and by the time I had Sx, I needed part of my liver removed due to scaring. I felt great the day after, but then, the following day was an explosion. I asked the surgeon and he said that it was normal and would stop shortly. It never did. Luckily I am not having incontinance any longer. That is the only thing that has changed since.I also found that I have ulcers from my throat to my intestines. I am on a strick diet and additional meds for that. They cause me great pain on top of my IBS pain. I was still suffering greatly so after having 2 CAT scans, bowel tests, blood tests, ultrasounds, endoscopies, I went to see my GYN because I noticed that still, the symptoms were worse during menses. He found that I had severe endometriosis and so I had a hystorectomy. I have been much better since then.So, now I am taking hormone replacements because I am only 35 years old. I went through 5 doctors until I found one that listens and works with me to control this. I was hearing that there was nothing wrong with me for 6 months and that started when I had ulcers, gallstones, endometriosis and IBS. I have been on around 20 different medications, some good, most bad. I have lost my job, independance, you name it. I nearly died from malnutrition. I struggle still every minute of every day because I mentally have no limits but physically have. I am a young business owner, wife, mother, grandmother and wish so much that I could have a normal, pain free, D free, medication free, fatigue free, life. Instead, I have to tell my family, friends, clients, that there are some days that I cannot get out of the bathroom or out of bed. That I cannot travel because of the D and severe pain that comes when I do.I found my way to this site because I feel that unless you have IBS, you do not have a clue what I am going through. I have even had people tell me, Oh, you have IBS, I had that once. What, are doctors doing, just handing out IBS Dx to answer for anyone having abdominal pain or trouble? They just don't get it and we suffer because of it.
 

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Jadee...Caltrate? (See Linda Nape for dosage and explanation.) Questran? (You will need a prescription for that.) IBSacol? (See the butterfly ad.) High doses of fiber? (See Talissa's postings on the OTC Board.) Mike's Tapes? (See eric or cookies 4 marilyn or Brett Sr.) Provex CV? (Those are the flavonoids I use.)That's 6 things that have helped others. Only one requires a prescription. Good hunting.Mark
 

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Discussion Starter · #11 ·
Well its been almost a year since I posted and everything they have put me on has failed and I am ready to give up hope for ever having normal bowel habits again.I applied for SSI benefits (because as anyone here knows with ibs-severe d its hard to even leave the house) and have been denied because I am able to keep most of my scheduled Dr. appointments. I have lost nearly 40 pounds in the last 9 months but I have been able to maintain my nutrition and have not suffered from malnutrition. I ponder the thought of that one since I rarely see the Dr anymore due to the cost.The meds I have been put on in the last nine months are as follows:Levbid for the IBS-DXanax for the anxietyLexapro for the depression and anxiety/panic attacks.Amodium as needed not to exceed 4 per day for more than 4-5 days.Multi Vitamin Month 4 taken off the Xanax and Lexapro because of change in health insurance and HMO/PPO new Drs choice was to put me on Ativan and Effexor along with the Levbid and Amodium. Either the Effexor or the Ativan caused me terrible stomach cramps.Month 6 Levbid no longer working (this has been an ongoing thing with the levbid since 1998. it works for awhile then just stops)They also changed my other meds to Buspar andCymbalta. The Buspar made me loopy, non functional and just plain sick. The Cymbalta, worked great for the stomach cramps, but I had no idea of when I was having a flare-up of the IBS-D. I was completely unable to leave the house.Last month I decided to go off all meds, except for the Amodium and the Multi-vitamin. I also eat Altoids like crazy for the stomach cramps.I did just fine on the Xanax and the Lexapro(although it made me feel weird). I did not feel because of the Drs choice in choosing not to prescribe that type or kind of medicine that I should be the one to suffer. I understand it is an addictive medicine and I could have become addicted to it. I understand that some meds will work and others wont, what I dont understand is if a med is working why change it. I have decided that when I go back to see a Dr, it will be a different Dr. I will probably go through the same trial and error with the meds again. In the meantime I am trying to cope as best as possible and want to thank everyone who replied. I have written a list of the meds suggested to take with me when I go see a Dr.I also agree with Sharell, If one more person tells me they had IBS-D once before... I will scream. My understanding from what I have experienced for the last 12-13 years is not that I once had IBS-D. I have IBS-D and will have it forever.
 
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