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Getting Desperate

2K views 28 replies 18 participants last post by  sable 
#1 ·
I'm a 27 yr old male who has had IBS-D since I was 19 years old. It is changing my life in a very bad way, as I avoid most social situations because I simply cannot do it. Before I leave the house, I go to the bathroom 4 or 5 times. Sometimes, I turn right around in the driveway and go again. I know that I am somehow subconsciously causing this as I can sit at home all day and be normal, but when I get ready to go somewhere, I am in the bathroom. I can't control my own body. I take Immodium daily, and Dicyclomine. When I travel or am forced to go somewhere, I do not eat. Having an empty stomach seems to help me control the D, but it causes me to feel ill from the Dicyclomine. An example of my life: I went to Thanksgiving at my fiancee's parents house. We then went to dinner at her uncle's house. I made a plate of food for appearance sake, but only nibbled on the food. During the whole weekend, I only drank soda and took Immodium/Dicyclomine. I lost nearly ten pounds in 3 days and when I finally got home and back into my comfort zone, I almost collapsed. It's hard for other people to understand that THIS is what I have to go through to get out into the world and do things. I recently started to wear adult diapers because I had to stand up in a friend's wedding and I just felt like I had no alternative. My sister (age 18) was just diagnosed with IBS. My father seems to have a minor problem, as sometimes fast-food gives him isolated D. No one really understands what life is like for me. My fiancee is used to waiting for me to get out of the bathroom and she is cool about being patient, but she misses out on doing things with me, and that is what upsets me the most. I want to take her places and never once worry about IBS-D. I think I am at the point where I need to find medicine that disrupts the connection from my brain to my butt because Immodium and the rest are helpful but definitely not the answer. The worst situation for me is to be in a subway car or a train with no rest-room. Also being with people who I am not comfortable running to the bathroom or wherever, in front of. It's like feeling trapped, and that is where the anxiety comes in for me. I also have to say anxiety also runs in my family. I feel like I dont have normal anxiety, I.E. I dont feel "nervous". For me, it seems to be just thinking about going somewhere or being in a stressfull situation sends me to the toilet. IBS-D and anxiety exacerbate one another. I look forward to eventually finding a drug that erases that anxiety and lets me do what I want to do.
 
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#3 ·
I havent taken any prescription drugs except for the dicyclomine. I am going to check out calcium supplements tommorow. I know I need some time of anti-anxiety drug because all these things that help D do not stop my brain from causing it. Thanks for your support.
 
#4 ·
E-mail me anytime you want to talk.I know how frusterating IBS can be.I hardly ever leave my house because of it.I live my life on the sidelines because it's safe.It also gets pretty lonely and not where i thought i would be at age 35!I really hope you can find comfort and not become what i have.I was taking Paxil and that was very constipating for me,but maybe it would help you.I'm on Zoloft now and that definatley would be bad for IBS-D.It's known for causing diarrhea.Unfortunately it did not help my IBS-C,but it does help anxiety issues and helps keep my emotions pretty level.My e-mail address is pinupgirl1948###yahoo.com
 
#8 ·
well i thought id post in response to steve shields. i wanted to let you know that your not alone and i have a similar story. i am a 23 year old medical student and anxiety and ibs D controlled and continue to control parts of my life. i hate the fact that at 23 i hate going out to a bar or to dinner and even sitting in long labs causes me stress. i take an occaisonal klonopin and alot of immudioum when i have to be somewhere for a long period of time. the klonopin only helps during or right before a panic attack. my doctor told me it was ok to stay on the immodium regularly and that usally helps. i also want to say i agree with the soda thing. if you have ibs stay away form any sort of soda, tea, or coffee. just have hope i used to let it control my life i even had to take a semester off from college. i stoped there though i wasnt going to let this ruin my dream. i have a really supportive boyfriend as well, but sometimes i feel bad for him and that triggers issuses with our relationship. i always feel like im holding him back and i feel bad that hes with me, but slowly you realize this is just a part of you not the entire you. just dont give up and your not alone.
 
#9 ·
I can really feel for you. I have been helped a lot by the suggestion of taking Caltrate 600 with Vit. D. Several people on this web site have taken it with good results. I do still have a bad day once in awhile but have improved a lot. Don't seem to have trouble with a once in awhile soda or coffee. I would rather drink wine anyhow!! I cannot have any sugar alcohol (in sugarless candy) AT ALL!
 
#11 ·
Don't start with a full tablet give your body a little adjustment period. Take 1/2 tablet with food at least 4 or 5 hours apart for the first 3 days.Linda
 
#13 ·
No side effects except constipation if you get too much. It is no cure only a control that works pretty well for a lot of us.You may have indigestion or gas for the first few days so start slowly with 1/2 tablet doses and then after that see where you are and see if you need to lower or increase the dose.No dry mouth no stomach ache or fatigue. Let me know if you have more questions and let us know how you are doing. If you have problems don't wait email me if you like I have lots of feed back to pass on.Linda
 
#14 ·
I thought this would be a great place to start. I am trying to find out information, get help, or just talk to someone that can understand. I feel like I am drowning with all of this. My husband has IBS-D and it has gotten so bad in the past few months. He has not been able to work, we visit the doctor once every other week, He has no will power to go on somedays. This diesease has taken control over him and our lives. I wish so bad I could wave a magic wand over him to heal him. He would love to go back to work, and lead a funtional life, not to be selfish but I would too. It could ease up on a lot of stress. It is not uncommon for me to sit and cry for no reason, just like I am doing now. I love him so much, and just want him to get better. Currently he is taking Paxil and Lotrinex. They seen to work some of the time, but resently he has been on antibotics and now it has gotten worse. Like today he was hoping to go to work, but instead he went to the bathroom 4 times in 45 minutes. I just wish I could help. I do what I can to make appointment, send the medical notes to work, talk to his work, because like he says this is not a manly dieseas in the way that his bosses understand. If someone would just be willing to help me out through this, I need ideas of what I can feed him (Chicken is getting old), or what I can get for him. Does anyone have any ideas, I am desperate. I want him to have his life back.
 
#16 ·
To Julie King, and everyone else.What I'm going to say is pretty gross probably, but we ARE in a diarrhea chat room. So far, although medicines can sort of help, I have learned that the only thing that is going to cure me is ME. I have to grab back control of my life. If I have to stop on the side of the road and go to the bathroom, I'm going to do that, but I'm still going to go where I need to go. I keep toilet paper and other things in my car so that I can go almost anywhere. And I've learned that my fiancee would rather deal with me making stops to go to the bathroom, rather than not going at all. There's days where I dont want to bother going through the whole process, but there are more days where I say F*ck IBS, I want to go do this. For me, when I put that decision into my mind that I AM going to leave the house no matter what, it does make it a little easier. THE KEY TO OUR FREEDOM IS NOT TO BE EMBARASSED OR ASHAMED about running to the bathroom. Believe me, anyone who spends time with me has seen me running to a bathroom, or worse. Situations still freak me out, but what is the absolute, most terrible, awful thing that can happen? You poop your pants. Well wear a diaper, then you just clean up and keep living your life....its gross and demeaning, but you get to be free. For me, I've never lost it and went in my pants, although I have felt like I was going to. It's torturous and something I don't wish on anyone, but I will not miss out on my life. People with severe IBS can still do anything they want, we just have to learn to do some things differently than other people, and take measures to give ourselves a way to go when we need to. Julie, I hope you can help your husband to feel strong and in control again, because it's a terrible cycle and worrying about IBS makes IBS worse. Tell him to take his life back and pack some toilet paper.
 
#17 ·
Steve,I'm not sure this is right for everyone, but if your D is very serious (which it sounds like it is) and you can't control it, you may want to ask your doctor for stronger meds to control it in the short-term while you see if lifestyle changes, etc. might help. The point is, there are drugs that will stop the D -- cold, and in my opinion no doctor should allow someone to suffer for fear of prescribing strong medicines that actually work. For me, it was opium tincture, which is pretty much the end of the line for D treatment. It has allowed me to live a fairly normal life for the past 2-3 years. I take only 0.6mL (about 10 drops) of opium 2-3 times a day and I've had virtually no D since. Of course opium can be habit-forming and ideally it shouldn't be taken long-term, but the point is that drugs are available to stop the D completely. It's a lot easier to try other modalities once things are under control. If you find a sympathetic doctor, you might even try codeine tablets first, which are far less controversial than opium. Codeine is very constipating and even at low doses (15mg, eg) D can be controlled.I was very much in the same situation as you are now-- I had D every time I ate and sometimes even when I had nothing to eat. I was basically anxiety-ridden and nearly housebound. I was afraid to go out and Imodium and Lomotil and other drugs didn't help. Stress reduction techniques helped a little, but I'm in a stressful profession. The opium has helped greatly and I haven't needed to increase the dose; in fact, I've decreased the dose over time(initially I was on 1cc (about 1/5th teaspoon) 3-4 times a day, but now I'm down to 0.6cc 2-3 times a day).Hang in there -- I hope you find a sympathetic physician or specialist. They can make all the difference in the world.
 
#18 ·
Albion:I have read that opium can be habit forming but, after taking it myself for the better part of the last 25 years, and NEVER having any trouble stopping it, I am not concerned about it. In fact, I take both Deodorized Tincture of Opium and Lotronex in order to keep my D under control (which, fortunately, it is now). Some cases of IBS can't really be adequately managed with just over the counter medications. So be it.
 
#19 ·
yeah my ibs d was soo out of control when i was 18, i couldnt leave the house for a month, i know how your feeling but don't let it crush your spirit, keep on fighting it. i onyl take lomerimide now i keep 80% diet controlled. Keep a food diary write down everything you eat and drink and if its something pre packed or something write down there ingredients and then the next morning rate how ill you are on a scale of 1-5 thats what i did, it took me around 6months before i started to become more normal if you check the food triggers thread in here you'll find a list of my triggers. I suffer from anxiety too though only when im mid bus journey when i know there are no loos for at least 25minutes, i dont take medication for it, it cant beat me now, i wont let it.i still dont eat when im out... rarely have plain grilled chicken but only if we are a few miles from home. email me if you want to talk.supportive partners are great my boyfriend helped my alot in getting back a social life... i dont go out everynight or weekend but sometimes i do and i enjoy, i cant drink alcohol all i have out is room temperature water but as you can see ibs and me enjoy a good fight hehehe so far im winning!
 
#20 ·
Steve's story is pretty much like mine. I just turned 30 and I've had this for years, but Immodium was pretty effective until about 3 years ago. I used to work as a medic, but can't anymore because my D has gotten so bad. I took a job behind a desk so I could be close to a bathroom. I finally talked to my doctor about my "issue" and was referred to a gastro. Numerous tests and a colonoscopy later, I was diagnosed with IBS and sent back to my family doc. He pretty much treats me like it's all in my head. On my last visit, he prescribed Effexor. I haven't started it yet because I'm a little nervous about all the potential side effects. I also take Levsin and 4 immodium per day. I am very careful about my diet, but even if I fast, I still have diarrhea. I'm new to this board, and I never realized there were so many people with problems like mine.
 
#21 ·
echris,I agree with you completely w/r/t opium tincture; I think doctors exaggerate the habit-forming potential of narcotics and are afraid to prescribe controlled substances. In my opinion, drugs like Effexor and Paxil are far more habit-forming than codeine -- has anyone every tried going off Effexor or Paxil cold turkey? I guess you and I are fortunate in having doctors who are willing to prescribe opium; I haven't noticed the habit-forming effects, either, and I'm not opposed to taking it long-term if nothing else works. The sad thing is that many doctors think opium = heroin or the like and believe everyone will get "hooked" if they take it. Also, the DEA is overzealous when it comes to narcotics, especially opiates. People in pain are routinely underprescribed painkillers -- even terminal patients! The point is, diarrhea CAN be controlled. Not everyone responds to OTC meds or mild narcotics or analogs, like Lomotil. In cases of severe, chronic diarrhea that is debiliating, there is no excuse for not prescribing whatever drug is necessary (codeine, morphine, opium) to control it.
 
#22 ·
I would go back to your doctor.. when ever I get D or vomitting for that matter I lose wieght like crazy I drop wieght like crazy and physically get sick as my body is not absorbing anything in the food I take in.The only thing that has helped my D which is well under control was to slowly increas my dietary fibre intake to 35 mgs a day.Things like cereal, whole wheat bread, peanuts beans( get the ones with out pork) and others can be slowly added..it made a huge difference with me..I have not had D for about 10 years now other than caused by viral.
 
#23 ·
Hi Steve, I also have anxiety induced D and can relate to your story. There is a really great book that has helped me deal with my panic attacks. It's called DON'T PANIC by R.REID WILSON and it's very helpful. I have recently started taking calcium pills (thanks to this great site) and I have noticed a difference. I am also considering asking my doc about LIBRAX which my mother-in-law was put on and she feels much better now. I believe it is also a mild anti-anxiety drug that also slows the digestive tract down. I have also ordered a free sample of DIGESTIVE ADVANTAGE IBS and I'm hoping to give that a try. Steve, you are absolutely right about not caring about people knowing you are in the bathroom. My motto is EVERYBODY POOPS. Most people are so concerned with themselves they are not even aware of what others are doing. I'm glad your fiancee is supportive...you will get your life back. It really is nice to know that we are not alone. I used to think I was a nutjob having ibs and anxiety but they do go hand in hand. Best of luck to you!
 
#24 ·
Kris,Thanks, I will look that book up. It's taken me a while to realize that I maybe do have anxiety because I didn't really know what it was. I am a calm guy, and most things really don't upset me. I don't consciously worry, but for some reason, my body does go into anxiety mode at times. I have realized that I am kind of panicking a little when I have to concentrate and breathe right, or I am fidgeting, starting to sweat, etc...I don't know why I get like that, but I will try to learn to control it.
 
#25 ·
I was wondering if you had considered probiotic therapy. This is what I am trying now. I am currently trying Culturelle GG, a lactobacillus. It helps to build up the immune system and helps to promote good flora in your colon. You can get it at Walgreens. It usually takes 4-8 weeks to show the full effects. I have tried Rowasa enemas and they don't help. If I take Immodium, I can get constipated. When I can't eat anything, I eat yogurt. This also has good bacteria in it. You might try this as well.
 
#26 ·
Steve, I had to reply to your posting because your story has touched me quite deeply. You sound like me. I have resorted to wearing "goodnights" (I am a small adult) just for a bit of comfort to go out with my Boyfriend. I have had "accidents" before and been throughly embarrassed. What I figured out (after about 1 1/2 like this) was that I had IBS BUT I also was severely claustrophobic. Most people describe this as a fear of enclosed spaces but in reality it is better described as a fear of not having an easy escape route. That was my problem. It is a VERY real fear which is realized by MANY people with IBS. Now most replys here are suggesting drugs to fix the problem. I prefer natural methods. I started seeing a Naturopath. I was nervous at first thinking it would be like voodoo witch doctor stuff BUT was pleasantly surprised. He put me on a special diet (based on my blood type . . the "EAT RIGHT FOR YOUR TYPE" diet and it has worked wonders. I can't suggest this more strongly . . . if you are anything like I was, you are probably at your witts end and ready to try anything. It does take commitment and determination and a REAL WANT TO FEEL BETTER but if you give it your all you should see some BIG results. ANYTIME you want someone to talk to who KNOWS HOW YOU FEEL . . . write to me, I am happy to listen, provide support and help in anyway I can. brooke24682000###yahoo.ca
 
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