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Discussion Starter · #1 ·
Hi...it's been a while since I've been back on here...but felt a need to return. I've been dealing with IBS-D for MANY years...but I feel like I'm at the end of my rope. I know there are people who are much worse than me, with more "serious" problems, but this IBS-D is really taking its toll. I had to go out of state this past weekend for a funeral. Usually when I travel, I have to take Immodium and take more than is suggested. Well, I took it, but ended up having D anyway the next morning (usually if I take the "extra" Immodium, it still works for a few days). So I took some more before the funeral. Then coming home that same day, on the second day of this trip, we had to stop by my aunt's house, and the D hit again (even after taking Immodium 2 days in a row! I started shaking all over...(I also suffer from anxiety and panic attacks)..and cried so hard...and told my husband that I'm so tired....tired of dealing with this. Sometimes, it's all I can do to go to the mall 20 mins from my house. I had gotten "better" a while back, but this year has been really hard emotionally and I guess that's part of the problem. I have another trip, weekend, planned for in Oct...but I'm scared to go now...thinking the Immodium won't work. I also take Xanax (usually 1/2 - 1 whole .5 mg several times a day). I also take Levsinex for my stomach...and Tenormin for the Mitral Valve Prolapse. I'm sorry that this is so long...it's just that it gets so depressing...my dr had mentioned to take St.John's Wort for the mild depression, but I haven't. I just don't want to get as bad as I used to be, where I became agoraphobic...but it's getting harder again to go places. I'm only 45, but I "feel" so much older...ya know?
 
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Hi Misty So sorry that you're feeling so down at the moment. I'ma c type so I don't have the problems you experience you do with moving away from 'safe' places.Have you tried caltrate for you D? Many people seem to have had success with this --- perhaps someone can advise you about dosage etc.Chin up and feel well soon.Roz
 

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Misty,If you would like info on the calcium please feel free to email me I only want to help and the calcium can help with diarrhea in a lot of cases.Linda
 

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Misty--Sorry to hear you're not doing well. Neither am I... I totally feel your pain. It's been a tough few days, but today, I feel the worst. UGH! And it just makes dealing with everything else that much harder. Little setbacks seem huge. Not to mention the fact that having to go to bathroom all this morning and curtailed all the tasks I was supposed to get done!!!! UGH!!!!!!!!!!!!! (again.)Regards, Lilymaid
 

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Hi Misty.Yeah, I know. As they say "been there, done that, got the t-shirt". At one point I was so sick with D so often and in so much pain..and so humiliated (especially when I found myself conducting senior managment meetings of a company I was President of from the bathroom...to the amusement of my senior management team)...anyway I got sick enough to contemplate terminating the problem with "extreme prejudice".However, after meeting some really knowledgeable and sympathetic practitioners (research and clinical immunologists and gastro docs)who had been studying these problems for decades, and who were willing to be patient enough with me to teach me to overcome my preconceptions, I began a road to stability. And it did not take that long once I had some structure to what I was doing. I have now been very stable (ie: literally asymptomatic) for over 6 years now, and suffer little if at all unless I intentionally or accidentally ingest something that is known to elicit a "D crisis"...(such as 4 days ago when I was visiting my mother Cleveland and gave in to eating frozen yogurt...real smart...there goes that "palate-rationalizing" again; took 2 days and 10 Immodium to stop it).I recommend (2) things that I believe can help you like they have helped many others:1. Get a copy of Professor Jonathan Brostoffs book FOOD ALLERGIES AND FOOD INTOLERANCE: THE COMPLETE GUIDE TO THEIR IDENTIFICATION AND TREATMENT. It is $18 on Amazon and packed with information about how to approach your eating habits and how they can affect your immune system and triger these problems.2. If you are not being managed by a board certified GI doc, get one. If you have one and gettting nowhere, start reading the book and see if the doc will support you in trying one of Dr. B's dietary managment approaches. If not, get another doc.Also consider looking into behavioral therapy (either cognitive or hypnotherapy) to help augment and get a handle on the anxiety and fear components of the disease. They complement each other (diet and behavioral therapies)...and can make the supportive pharmacotherapy more effective while you work on finding and removing the dietary triggers and complicating stress responses which are underlying your disease.And write here anytime and often for help. Lots of experienced ears.Have a DFD meanwhile.MNL
 

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Discussion Starter · #6 ·
Thanks to all of you who have responded....I know that there are lots of great people on here and it's nice to know that I'm not alone. Mike, I haven't really noticed that "certain" foods set me off...mine always seem to be triggered by "nerves". I've been home since Saturday now and have no problem with diarrhea....but then, I've not been anywhere..I'm at home, working on the computer, and watching my 2 yr old grandson. Now, that's not to say that I NEVER have D while at home...'cause I do. But not like it used to be. It's the "going somewhere" that sets me off....the "worrying" about anything and everything...the "what if" thinking...and the feeling of being pulled in so many directions with no time for me. And yes, Lilymaid, those little setbacks CAN really seem huge...which is what I'm going through right now...as far as "going somewhere". That's what is so depressing to me. The setbacks are so hard to deal with.To Roz and Linda... as far as the Caltrate, I bought the Caltrate 600 in the purple and white box after reading so much about it on here, but haven't tried it yet. I didn't know if it would interfere with my other meds that I'm on. And can you still take Immodium while taking the Caltrate? (I will email you Linda) My dr gave me some samples of the Lotronex, he wasn't really keen on it, so I haven't tried that yet. I used to take Metamucil every night...but haven't done that in about a year. I've had trouble with my nerves and stomach since I was 6 yrs old...and was on tranquilizers (as needed) at 12...but that didn't last too long. My anxiety kicked in really bad about 10 yrs ago..along with the IBS-D. Pepto got to where it wouldn't work so now it's Immodium. I just hope it doesn't get to the point where THAT doesn't work. I appreciate everything that everyone is saying to me....any advice is greatly appreciated! I just want to be able to "do" things...and go places...without so much fear! This trip coming up in Oct is in the mountains! Not many bathrooms around there! I really don't want to have to cancel it...but if I can't find some way to deal with the D, I may not be able to go...I'm a huge Wizard of Oz fan, and this is the only event anywhere near us! Thanks for listening to me...and any help you can offer. This board is wonderful!
 
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Misty:I feel your pain too, kid. I wish I could be there to lend some moral support.You should try the Caltrate. So what if it interferes with your other meds? They aren't working anyway. (It probably won't though).Another thing that's worked wonders for me is Glutamine. You can get it at any health food store in pill or powder form. The powder form is much cheaper by the dose. Take 2-5 grams dissolved in water 1/2 hour before each meal. For me, it took me from 10-20 trips per day to 2-3 in about 48 hours. The stools were still pretty loose, and LNAPE e-mailed me about Caltrate, so I tried that. Between the two, I no longer have any trouble with D (about 3 months, now).Right now, I take about 5 grams/day of glutamine plus one Caltrate/day for maintanance, and use extra calcium as a "kicker" if things "loosen up".I hope this helps.------------------Never give up! Never surrender!
 

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Discussion Starter · #8 ·
Thanks to everyone for your concerns. I did email LNAPE and will try what she suggested about the Caltrate. Things have been really rough emotionally for me lately and I really believe that this has put me into a setback. A lot of people tell me to "quit worrying" but as I'm sure some of you know, that's easier said than done. I'm also going to call my dr and set up an appt. This trip coming up really means a lot to me and my husband and I'd really hate to miss it...but with the state of mind that I'm in right now...with all the emotions, I'm sure that the IBS-D is going to hit full-force.
 

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Hi misty,I had to write you because I know EXACTLY how you're feeling. I too, feel as though I'm back to square one. I've read mixed stories on the BB about imodium. Some people say that they've become immuned to it, others say you can't because it doesn't cross the blood brain barrier. So in my case I've either become immuned OR my IBS is getting worse. Not sure which.My story; I took five imodiums on Saturday night because I was going out with friends (house party and then the bar). I figured at the time I was really overdoing it but didn't want IBS to ruin my evening. Didn't take any Sunday or Monday because I figured that taking five on Saturday would keep me fairly C for a couple of days. At work on Monday I ate lunch (and nothing out of the ordinary) and then the D hit. It wasn't just a little.. it was the worst D I've ever had. Your post brought tears to my eyes because you said everything I was feeling. I don't know what to do anymore. I'm at the end of my rope with this thing. I'm only 22 years old and while my friends are graduating from university and going out all the time I'm sitting at home pondering what to eat, what will happen if I eat it, cancelling on my friends and family and dealing with the guilt that comes with it.I'm hoping yesterdays attack was isolated, but I'm afraid to eat today. I had some soup last night. I have some big plans this weekend and I'm so nervous about going anywhere now. Imodium was my life saver now I don't even know if I can depend on it!I'll use some of the suggestions posted here.. but yesterday was a major set back. Email me if you'd like to talk and be sure to keep us updated.
 
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Misty and shyra22f:The last time I had a real bad D attack, and Immodium wasn't working for me either, my wife brought home some Equalactin. It worked, and worked quickly. It's calcium polycarbophil. It is sold as a bulk-forming fiber supplement, but the fact that it has a lot of calcium probably helps, too.It says on the box to only use it for four days, max, but it's safe to take long-term (they put that phrase in so people don't use it to mask symptoms of a more serious condition).For me, the Equalactin stopped the D, and Glutamine and calcium have kept it away.
 
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Misty - I am so sorry you are not feeling well. I, unfortunately have been in the same boat as you lately. Hang in there. I have stopped taking the Lotronex and I am going back to the Caltrate. The Caltrate worked for me in the past. Good luck and feel better
 

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Misty,I know how you feel and I too am there. My mornings are the worst and God only knows if any food really triggers my D. I take immodium in the mornings and around 6pm. I take caltrate in pink and white ( no magnesium) three times a day. LNAPE said you need to keep it in your system always so time it just right according to when you awake and go to bed. I have been on caltrate since late July and feel a little better but it's such a complete circle. I get nervous leaving the house for work which makes me want to go. I went on a cruise in august and all went well until the bus ride from the ship back to the airport to go home. I had to hurry and get off the bus ( before we left) and then they left without me.Anytime you think you're alone just hop on board this BB and you'll feel better already.e-mail me if you want to talk too and just remember there's nothing so awful that can happen in life to get so upset about.Jane
 
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