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Discussion Starter · #1 ·
One thing I have a really hard time with is getting descriptive with my symptoms. But I am realizing more and more that I don't seem to fit in with the "real" criteria for IBS. (I am not saying I don't have it, but this all just doesn't make sense)I have not passed anything remotely solid in at least a month. (and prior to that it was rare if I did) And when I say solid, I mean not even anything mushy or soft. Just pure colored water, and as the day goes on it gets more clear and I have only a little bit of sediment that comes with it. I must have passed a gallon of this colored water in less than an hour this morning. (5 trips to the restroom)Is this kind of D really typical of an IBS kind of D? I really don't feel that is, but I don't know where to turn to for help.I have been on Lotronex for 4 days now. I know this is too soon for results, but everyone on this board has had at least some effect of this drug, at least a slowing down of the D, or getting C, or even a worsening of their symptoms. Nothing has changed for me.My Doc has basically said he doesn't know what to do for me anymore and wants me to get help "elsewhere". (for my present conditions, he has not "fired me" as a patient) Unfortunately, short of telling me to go to the Mayo Clinic, he has no advice or help as to how I should get help. And without his referal, my med coverage is minimal. He did refer me to the GI Doc who did my colonoscopy, but she offered no other help or support for my condition, so I don't see any point in seeing her again.I feel totally confused as to how to stop or even slow down this type of D. I have even thought about going to an ER at a big hospital, but all my blood work is good and my electrolytes so far are good, so I know they would just say go see a GI Doc.I have lost 35 lbs so far. I don't want to wait until I weigh 80 lbs to get this under control. I am very confused as to what to do.
 

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Fatigued, I feel so sorry for you...you've endured so much with all the tests, etc. I can only say that my D can be pure liquid but most often it has small bits of semi-solid material that settles at the bottom of the bowl (sorry so graphic)! If I were you I would get MAD and start demanding some action with these docs!! Shoot, take in a gallon container of your D and slap it on their desk and get some answers!! Don't sit back and let yourself waste away...get mad!! If the doc you are seeing is stumped then demand he refer you to someone who has experience with these problems that can help you. Grrrr...I'm mad FOR you!! Hang in there...it will get better, it's just a matter of finding the right doc to help you!!
 

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Hi Fatigued,I am a C type, so I can't offer too much advice about D. I am assuming you have tried Caltrate and Immodium? How much Lotronex are you taking? I know the prscribed dosage is two pills a day. Maybe you could talk to your doctor about taking more? If I were you, I would look for another doctor, especially if you are losing considerable amounts of weight and he can offer you no advice. Sorry, I'm not more help. Maybe somebody else will have some suggestions. Hope you feel better!.------------------"Remember To Stop and Smell the Roses"Rose (C-type)
 
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Discussion Starter · #4 ·
Fatigued--are you under a great deal of stress or are you depressed? The reason I ask is that the only time something this bad happened to me was during a really bad emotional time in my life and I too lost weight like this and had D this bad. I also would have become agoraphobic (sp) if I hadn't had a child to support and been forced to leave the house (sometimes at the forcing of my uncle, a minister!). Hang in there and keep trying to get to the root of the problem--I know how hard it can be.
 

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Hi Fatigued:I'm so sorry your having this problem. I wish I knew what to tell you, but I don't. I get it like that once in a while, but not often enough that I've asked questions.I hope someone has an answer for you. In the meantime, I agree with everyone else, push the docs. They've got to try to figure out what it is.JeanG
 

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Another doctor is a very good idea. Have you tried Kaopectate? It like a clay which absorbs water. How about questran? Has your small intestine been checked? Small bowel series using barium and an X-Ray? A gastrologist is the one who would set-up all these tests. Your family doctor sounds stumped and he better give you a referral. It sounds like your Colon has stoped working all together?
 
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Discussion Starter · #7 ·
Dear Fatigued: I have had 'D' as you are describing along the way but I did not lose weight as you have been.I personally would be out of my mind if everyone threw their hands up and not be able to help.I see you are from Indiana ... are there any major teaching hospitals who specialize in GI problems there? You must be willing to listen to them and try the suggestions they give you. It doesn't sound as though you have professionals who care? or know what they are doing! Are you willing and able to seek help elsewhere...like Mayo or especially Johns Hopkins? How about the Cleveland Clinic? At least a phone call?If all you have been through had happened to me, I'd be on my way.Best wishes and hope you feel better soon.------------------BJV/Female__(D)[This message has been edited by osgev (edited 06-09-2000).]
 
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Discussion Starter · #8 ·
Thanks for the replies.My Doc really doesn't know where to refer me, which is why he isn't referring me. He is not unsympathetic, he just admits that he is stumped.odeal, no I am not under any stress (well, I just got some stress news today, but more on that later) and I have had some depression since this is going on, but it is not major. I really have nothing but calm around me 99% of the time. I have a good life and lots of support.I just don't know how to circumvent my insurance issues. While we don't have any real seriuos money problems, we are not in a position of being able to afford hotels and airline tickets, etc to go to one of these major places.To complicate that, I did find out today that my Dad is going to be having a triple bypass in approximately 3 weeks. I really am not too stressed about the surgery, he has good Docs, but I will be flying home for at least 10 days to be there for the surgery and to help Mom. As tired and wasted as I feel and not being near my Doc is really the stressful part of this for me. I really want to try and get some help for this before I make the trip home.I have lost my ability to drive and my husband has no vacation left due to all my testing etc. I just don't know how to "get there from here!"I am usually an excellent problem solver. One of my strongest traits actually. I just do not know what to do! And I know I need help, like yesterday.
 

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Dear fatigued..Don't give up! If there is one thing I have learned you have to keep yourself tough (although I do admit to an occasional breakdown when I see Lindsey home from school). I have learned so much from reading your messages and I know you are strong. I'm sorry things are hard for you right now, but I'm sure you'll see some results eventually.Carol
 
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Discussion Starter · #10 ·
Fatigued,At the Parkview Publishing IBS board there are several postings regarding L-Glutamine for D. Those who have tried it seem thrilled with the results. It's not real expensive and you can get it anyplace that sells supplements. Check out the postings at the other board. It's certainly worth trying.
 

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Keep the faith! You sound very strong and my advice would be to go to whatever lengths you need to to get to a good hospital. I recently just made an appontment at University of Chicago and will need to travel to get there. With the chaos going on in my life now it won't be easy, but I feel I have no choice. No doctors here can find ANYTHING wrong and I can't live like this! My suggestion is to call University of Chicago and just TALK to some people there. They are soooooooo nice and helpful. One of the questions I asked was how often they come across people they CAN'T diagnose - and its not often. They may not be able to eliminate your problem but chances are they will be able to at least diagnose it - and I think that is half the battle! Good luck and let us know what you do!
 
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Discussion Starter · #13 ·
Well, I think we have made a decision. Not sure if it is the best, but the only thing I know to do. My husband is going to take me to the University of Chicago ER, where I am going to beg (well you know what I mean) for help. I figure at the very least they will be able to get me into a specialist sooner and help me get my Doc to give the needed referal.I need to find someone who will take me seriously, and fast. This is the only way I can figure to do this.Does this make sense or am I looking at this all wrong???
 
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Discussion Starter · #14 ·
I don't think you are wrong. I think you are right!!God Bless you and your husband... He sounds great and supportive.Best wishes and Take Care.------------------BJV/Female__(D)
 

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Not sure if this will help but all of these doctors are all members of the American Gastroenterology Association, and should have some good resources at their fingertips. I didn't know where you lived in Indiana so I posted all of them. Hope you find someone to help.WesIndianaKaleem Ahmed, MDFort Wayne, IN USA(219) 484-2524 (phone)(219) 482-9539 (fax)Daniel T. Barrido, Jr., MDMarion, IN USA(317) 674-7771 (phone)(317) 674-7773 (fax)David L. Bash, MDGastroenterology AssociatesIndianapolis, IN USA(317) 355-1144 (phone)(317) 355-1155 (fax)Lawrence J. Born, MDIndiana University Medical Center, Division of Gastroenterology/HepatologyIndianapolis, IN USA(317) 278-0859 (phone)(317) 274-3106 (fax)Joseph M. Buadoo-Croffie, MDJ.W. Riley Childrens Hospital, Indiana University Med. CenterIndianapolis, IN USA (317) 274-3774 (phone)(317) 274-8521 (fax)Ilwoong W. Chang MDMunster, IN USA (219) 836-6002 (phone)(219) 836-6023 (fax)Gene Z. Chiao, MDIndiana University Medical Center, Division of Gastroenterology/HepatologyIndianapolis, IN USA(317) 274-7320 (phone)(317) 278-0164 (fax)Brian D. Clarke, MDGastroenterology ConsultantsIndianapolis, IN USA (317) 841-2100 (phone)(317) 841-2105 (fax)Stuart H. Coleman, MDNew Albany, IN USA(812) 945-0145 (phone)(812) 949-5435 (fax)David W. Crabb, MDIndiana University Medical Center, Division of Gastroenterology/HepatologyIndianapolis, IN USA(317) 274-3122 (phone)(317) 274-1437 (fax)Donal P. Dunne, MDUniversity HospitalIndianapolis, IN USA(317) 844-5368 (phone)(317) 630-2077 (fax)Evan Lloyd Fogel, MD, MScIndianapolis, IN USA (317) 274-7574 (phone)(317) 274-0975 (fax)John T. Geneczko Jr, MDArnett ClinicLafayette, IN USA (317) 448-8000 (phone)(317) 448-8014 (fax)Prodyot Ghosh, MDBloomington, IN USA (812) 333-5973 (phone)(812) 330-3681 (fax)Gardar T. Gislason, MDEvansville, IN USA(812) 477-6103 (phone)(812) 477-4897 (fax)Joseph H. Haseman MDEvansville, IN USA (317) 477-6103 (phone)(317) 477-4897 (fax)Debra Jean HelperIndiana Univ Medical CenterIndianapolis, IN USA (317) 274-3565 (phone)(317) 278-0164 (fax)Joseph M. Henderson, MDGastroenterology AssociatesIndianapolis, IN USA(317) 355-1144 (phone)(317) 355-1155 (fax)David I. Hollander, MDGastroenterology AssociatesIndianapolis, IN USA(317) 355-1144 (voice)(317) 355-1155 (fax)Thomas John Howard, MDIndianapolis, IN USA (317) 274-4999 (phone)(317) 278-1635 (fax)Daniel B. Hurwich, MDMunster, IN USA (219) 738-2081 (phone)(219) 736-4658 (fax)Paul Y. Kwo, MDIndiana University Medical Center, Division of Gastroenterology/HepatologyIndianapolis, IN USA(317) 274-3090(317) 274-3106Glen A. Lehman, MDIndiana Univ Medical CenterIndianapolis, IN USA(317) 274-4821 (phone)(317) 274-0975 (fax)Lawrence Lumeng, MDIndiana University Medical Center, Division of Gastroenterology/HepatologyIndianapolis, IN USA(317) 274-3505 (phone)(317) 274-3106 (fax)James M. McGill, MDIndiana University Medical Center, Division Of Gastroenterology/HepatologyIndianapolis, IN USA(317) 278-0859 (phone)(317) 274-3106 (fax)James R. MeadowsMedical ConsultantsMuncie, IN USA (317) 281-2000 (phone)(317) 281-2040 (fax)Ricky A. Meyer, MDGI Consult IncFt. Wayne, IN USA (219) 484-2524 (phone)(219) 482-9539 (fax)Reid M. Ness, MDIndiana Univ. Medical CenterIndianapolis, IN USA(317) 630-7119 (phone)(317) 630-6815 (fax)Rod A. Nisi, MDCentral Indiana GastroenterologyIndianapolis, IN USA(765) 646-8477 (phone)(765) 649-0014 (fax)Thomas V. Nowak, MDKokomo, IN USA(765) 868-0477 (phone)(765) 868-9528 (fax)Patrick John O'Dea, MDSouth Bend, IN USA(219) 234-0049 (phone)(219) 234-0053 (fax)Magdy Z. S. Rofail, MDRichmond, IN USA (765) 939-2037 (phone)(765) 939-0138 (fax)Edward V. Schultz MDFt. Wayne, IN USA (219) 432-6174 (phone)(219) 432-6388 (fax)Stuart Sherman, MDIndiana University Medical Center, Division of Gastroenterology/HepatologyIndianapolis, IN USA(317) 274-0925 (phone)(317) 274-0975 (fax)Philip J. Snodgrass, MDIndianapolis, IN USA (317) 635-7401 (phone)(317) 267-8762 (fax)Carl S. Wrobleski, MDMed Group of Fort WayneFort Wayne, IN USA(219) 434-7039 (phone)(219) 434-6337 (fax)Leonard E. Zeabart, MDMuncie, IN USA (765) 281-2000 (phone)(765) 281-2040 (fax)------------------Only those who risk going too far, will ever know how far they can go.
 

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Sounds like a good plan Fatigued...go for it! I'll keep you in my thoughts and prayers in hopes that someone will get to the root of the cause and give you a proper diagnosis! (((hugs)))
 

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Fatigued you sound just like how I was when I was first diagnosed (it was the weight loss of 30-40 lbs and chronic D for years) that brought me to the GI DR for my colonoscopy, I was afraid that I had cancer. Those were indeed the days of misery and just about as bad as my IBS has ever gotten. I've had it for over 20 years. Let me assure you that I am not like that today. I am not nor will I ever be "normal" bowelwise, these days (past several years)I am both D and C and on "good days" I just go alot. The things that helped me (slowly but real progress)were-1.knowing that I had a "negative" colonoscopy 2.librax (I tried donnatol and bentyl too)3. #2 fibercon pills a day 4.eating more fiber type foods like whole wheats 5.getting enough sleep! 6.going to bed at the same time and getting up at the same time each day 7.time Things didn't change overnight but the fiber really helps make the watery d more solid and less d like. I think the librax helps slow things down. Alot of people have problems with fiber products so you have to go slow, some people like citrucel but if you are in Canada it isnt available. It sounds wierd that fiber would help D but it does. The downside (for me) is that I have much more gas than I did before, but I will take it, it is so much better than how I was. I can still remember not having a formed bm the whole time I was pregnant and for a few years afterward. Were Lotronex available back then I would have camped out at the DR's. Maybe it will be more effective after you have been on it longer. Were they able to help you at all at the hospital? Maybe they know of a GI who has a special interest in IBS. If such a person isnt available in your PCP's hospital and you NEED the specialists services, which you do, most health plans will approve and cover the referral. Please feel free to e-mail me if you need any support. I DO know how you feel.
------------------Nancy
 

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Fatigued...sounds like you are on the right track. I feel for you. I know exactly what you are going through. I was exactly like that and what worked for me was pretty much what NancyCat suggested. She has many good ideas. It sounds about like my plan and it does take time. But if you do find something at the doc please share it with rest of us. Good luck to you.------------------Joe
 
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Discussion Starter · #19 ·
NancyCat and Joe,I am not trying to sound pessimistic, but been there, done that and unfortunately in my case it actually made things worse. I have tried the various fiber things, the caltrate and then the citrate, the watching of my diet. And I did have the colonoscopy so I am not in the "fear mode" of having cancer, thank goodness!I had great luck with acidophilus for about a week, and then it failed too.Lately I have not been caring what I put in my mouth, because I have such a difficult time eating as it is, and I know I need food even if it does run out of me. And it hasn't made things any better or worse by just simply eating whatever I can tolerate to put in my mouth and swallow. Some days the most I can gag down is a can of Ensure. (yep I have tested that as a trigger too, NOT)I feel like such a whimpy complainer here. That isn't how I usually am. I don't care if I have IBS if they can just find something that will stop the D at least occasionally.
 
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Discussion Starter · #20 ·
Almost forgot, Wes and Tracy thanks for the list! Interesting that my former GI Doc isn't on the list. But then none of them are very close by. I don't recognize a few of the towns, I will look them up, but I think we are actually closer to Chicago than most of them!Thanks for taking the time to look those up and post them for me.
 
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