# Looking for help and getting desperate



## catsandcookies (Oct 28, 2012)

Hello, I just joined these boards after reading quite a few posts on it. Here's my story. It's mainly so I can rant and look for suggestions on what to do. My IBS symptoms started last March, back when I was still in school. It started as barely noticeable. I just got a little bit of gas after lunch, and I remember just holding it in, hoping my stomach wouldn't make too much noise. After I got back home, I would have a bowel movement (I always had one in the morning, too, right after breakfast). It slowly got worse and worse, so I told my mom about it and we went to the doctor's to try to figure out what was wrong, after trying Gas-X to no avail. First he prescribed Beano, and told me to take it before every meal. I did, I think for a few weeks, and it didn't make a difference. I went again, in tears, and he told me to basically have mashed potatoes at lunch, because he believed it would help. Let me say now that my diet was very healthy; basically all whole grains, plenty of fruits and vegetables, fiber, a lot of water, etc. And I had starting running about 3-4 times a week and walking or doing another exercise on the other days. The mashed potatoes didn't work. At that appointment, they also asked me about my bowel movements, and I told them I had to sit on the toilet for 30-45 minutes for all of it to come out and to feel relieved. It was also really soft, i.e. not really a solid bowel movement but pretty far from diarrhea, like in the middle.

After a while, I started missing school because of the stress and humiliation of the really loud noises my stomach would make from holding in gas. We went to the emergency room at this point; there, they did an abdominal X-ray and found that I was pretty constipated. The woman there asked me if I had taken antibiotics recently, and I told her i took some for an ear infection about 5 months before the symptoms started; I had also taken them for another ear infection 8 months before the symptoms started. I also told her that I noticed I had some gas when I got my period after a few months of not getting it, and that was in December, a few months before these major symptoms started (I had anorexia 3 years ago and a relapse, not as severe, 1.5 years ago, so my periods were pretty erratic, even after having recovered for more than a year). She prescribed some probiotics to take for a week or two and sent me home. Well, I went through the probiotics and I felt no better. My symptoms were simply getting progressively worse, and I kept taking more days out of school. In the beginning, when I stayed home from school, I felt totally fine. However, at this point (I think it way May) I was feeling ill at home as well, mostly bloating, gas, abdominal discomfort, and slight pain. I couldn't keep running because I would feel like I'd poop my pants while I was running, but then when I got home I wouldn't be able to have a bowel movement.

Finally, I was referred to a gastroenerologist, who reviewed the X-rays (and I think she requested new ones because it had been quite a few weeks after my visit to the emergency room). She told me to take a mineral oil enema followed by a saline enema for two days, and then to take Miralax every day after that indefinitely. Sha also tested me for lactose intolerance (breath test) and celiac disease (blood test) and both were negative. I don't remember if summer vacation had started or not yet at this point. But I took the enemas and started on the Miralax, and I felt a lot better. I still had the symptoms, I think, but they were barely noticeable. I remember feeling a lot better after school ended, but I still had some anxiety about my stomach making noises in social situations. After a while, I felt like I didn't need the Miralax anymore (I'm not sure if this was a huge mistake on my part or not...). So I started taking it every other day, then every couple of days, then stopped taking it altogether. I felt totally fine without the Miralax and was happy. I was having one normal bowel movement every morning, almost no stomach discomfort, and normal levels of gas.

However, as the summer went on, I started to have to spend more time on the toilet to feel relieved every morning. The old symptomscame back and got worse than they were before: bloating, stomach pain, feeling of incomplete evacuation, gas, nausea, slightly looser stools. I took the enemas again, believing that it would help me feel better, when I felt really constipated. However, it didn't; the next day I felt exactly the same. I decided I would just have to live with this for the rest of my life. But it just slowly got worse and worse and worse. I tried totally eliminating dairy, even minute amounts, for several weeks, and felt no better. I completely eliminated gluten for a few weeks and felt no better. I went to the gastroenterologist again; she told me to start the Miralax again, but at a higher dose. It didn't work. I did another round of the enemas on my own, and found that the next day all of my symptoms simply disappeared. However, the day after that, everything was as it was before; all the pain, discomfort, nausea, ugh. I talked to her on the phone, after increasing the dose of Miralax yet again had no effect, and she told me to take the enemas again, but in the reverse order (I forgot which order before and did saline followed by mineral oil, but was supposed to do mineral oil followed by the saline enema. So I did this, and the next day I got another X-ray. A few days later she called and said I had quite a bit of poop in there (that could mean anything!) and told me to take a higher dose or Miralax for a few days; if I felt better, she said, I wouldn't have to call the next Monday. No matter how much Miralax I took, I felt no relief and I just kept getting worse and worse. Oh, did I mention I had to do homeschool this year because I just couldn't handle having this in school? It had begun controlling my life and I felt more and more ill every day.

Finally, we made another appointment with her. While waiting for the appointment, I tried going gluten free again for a week and found no abatement of the symptoms. I also started taking a good probiotic every morning. I tried prune juice in the morning, which gave me diarrhea and gas. I took less prune juice and still felt very gassy and had some diarrhea. I had tried high fiber diets in the past, and low fiber diets. I was trying to walk every day, but the stomach pain and discomfort made it really hard to do much physical activity. Finally, feeling like my stomach was about to burst, the day of the appointment came up. We talked and told her how I had been getting a lot worse, and how I started getting a lot of mucus in my stools with diarrhea and tiny, hard stools coated with it. She said the part about diarrhea with mucus sounded like it could be Crohn's, but kept trying to convince me that I just had IBS. So she said she would do a colonoscopy and endoscopy, and that they would call me that Friday (the appointment was on a Wednesday) to tell me the date; she said it'd probably be in one to two weeks. In the meantime, she told me to take two bottles of magnesium citrate, one at 9 AM, one at 3 PM, and to only have a light breakfast and dinner; other than that, only liquids. This was similar to the clean out I would do the day before the colonoscopy and endoscopy; the only difference was that, on that day, I would not be able to heat any solid food whatsoever. She said to take Colace twice a day after this. She also gave me a stool testing kit and explained that they'd test it for bacterial overgrowth, parasites, etc. She also showed me the latest X-ray (taken about 2 weeks before the appointment), which showed that my whole colon was totally backed up with stool, despite having 2-3 bowel movements every day. And she showed me the results of my latest blood test; my thyroids appeared normal as did everything else--the only things that were a little low were my glucose, calcium, and vitamin D.

Which brings us to a few days ago. I took the grueling magnesium citrate, and went to the bathroom so many times that day I lost count. It was all just liquid stool, and then clear liquid mized with stool, and then just clear liquid. It was an exhausting day, but I knew I'd feel better after. The next morning, I felt great. I had diarrhea after breakfast, which was probably some of the magnesium citrate left in my system. But then I had lunch. And my stomach started hurting. Words could not describe the sinking feeling in my stomach, the feeling of hopelessness, of anger, so much sadness... I'm crying just writing about this. After this, everything was just like it was before the clean-out. The pain, the nausea, the bloating.... Ugh... And it wasn't in my head, it wasn't caused by any stress. I felt on top of the world that morning, but wanted to collapse that afternoon. I hate when the doctor says I need a therapist or something. NO! THIS IS NOT IN MY HEAD!

I know that this is pretty long already, and I doubt anyone will read it, nevermind reply to it. But here's just a little more information. I'm 14, going to be 15 soon. I'm 5'8", about 135 pounds. I eat healthily, try to exercise regularly (as I said earlier, it's hard because of the discomfort I get from it). My symptoms are: constipation, bloating, loose stools/diarrhea, lower abdominal pain, gas, mucus in stools, nausea, lack of appetite, loud noises in my stomach/intestines (high whining mixed with gurgling and grumbling... all types)... I think that's all. But lately, it's been really bad, and I'm getting headaches, just feeling exhausted all day, and random pain in my chest, shoulders, and legs--basically my whole body, but mostly my lower abdomen. I feel so horrible all day, and just don't want to eat because of all the pain it gives me, but I don't want another relapse of my eating disorder. I find that when I get my period I have diarrhea and the constipation doesn't seem as bad, but I get more abdominal pain. Basically, whatever I eat, I feel terrible. I find that when I eat within a few hours of bedtime, my stomach hurts a lot more and the next day I feel absolutely horrible; this is especially true if I eat a large bowl of cereal with milk, or oatmeal without milk. I also feel a tiny bit more bloated when I drink a glass of milk with my meal, so I'm not doing that anymore. I'm just... I can't take it anymore. I've seriously contemplated suicide many times because I'm losing hope and can't stand it; every day it just gets worse, and I can't really concentrate or enjoy anything anymore because of the constant pain, nausea, and discomfort. This is ruining my life. I'll be terrified if they don't find anything in the stool test or colonoscopy/endoscopy. If they don't, what do I do? I'm only 14 years old, and I had such big plans for the future, but now they're all just shattering and falling away. I can't hang out with friends anymore, be anywhere remotely quiet, exercise without feeling pain... I've given up so many things because of this: school, running, a social life, enjoyment in life, optimism for the future..

Oh, and there's one thing I totally forgot. When I was younger (about 7 years old) I had a fecal impaction (I didn't poop forlike a week). My mom gave me a couple of suppositories and it went away. Also, my brother, who's now in his twenties, had a really bad fecal impaction in his late teen years, which had to be removed with emergency surgery. In addition, when I was younger I remember having a really strong urge to pee but then not being able to. I think this went away after a day, but it came back from time to time... I'm not sure if this is totally relevant. I don't know if I just have a really stubbord fecal impaction, or hormonal issues, or a slow colon, or some other kind of blockage, or a yeast overgrowth... I just keep researching all day hoping to find out what's going on, and if there's anything I can do to feel a little better until I get the colonoscopy/endoscopy and the results from the stool test. I'm desperate, I just want to feel a little better at least, just want to have a normal appetite again and not feel like I'll vomit everything I eat, and hopefully a normal life.

Thank you so much for reading my story. Hopefully someone on here can help me out or offer suggestions... It's late, so I don't have time to go back and check all my spelling and grammar, so sorry if anything's unclear; this keyboard is being rather unresponsive... Anyway, thanks.


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## Getting Me Down! (Oct 29, 2012)

Hiya, ive just took time to read your post and it is well written and explained!
I am in a similar position as you right now i think... Im from England, and turned 17 just two months ago.... but i have suffered symptoms from about 14!
Just started off having Mushy stools 2/3 times in a morning, then i could go about my day without any problem, school was never really any problem for me. However when i finished school, things also got progressively worse. My anxiety problems have raised, only making my problems worse, i now too have no social life, and left college because i was taking so much time off. I now can go to the bathroom about 5-6 times a day. Would be less, only i never feel empty, like always a incomplete evacuation, but the stool is usually always soft/mushy. I have taken mebeverine and peppermine capsules which have not helped, and now i have Loperamide Hydrochloride 2mg on prescription. I have seen a gastro who thinks it is IBS but i think it really may be a food intolerance, otherwise any medication i try would be of some help!
What makes it worse is I want to start a relationship but this just instantly puts a halt to that!
I am back to see my Gastro in January, and im going to ask them to do tests for Gluten and Lactose intolerance. I see you said you have had tests done for these before but they came back negative. However it can be so difficult to find if a person is Gluten intolerant, and i would ask for further tests to be done because it really could be that, most foods we eat contain Gluten or Lactose, therefore symptoms can always be a huge bother, and you may not realise it may be everything your eating thats effecting it. Just dont let the doctors fob you off, keep going back and demanding more investigation and tests, because gastro problems are never normal, and can really bring you down in the dumps when you aren't living a life like your friends do! I've missed out on quite a lot the past 2 years. ( I turned a boy down in school because i get nervous and nerves make my bowels act up which is embarrassing and would have put a bit of strain on the relationship) .. Only now i realise i really like him but everything is just 10x worse than school)!!!
I often get very upset about it, because i never go anywhere! No social life, no college, no job! I also wrote my own post today, feel free to read mine so you can see exactly how IBS really affects me! (if it even is IBS, pfft!) x


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## dt1070 (Oct 28, 2012)

ok so it was very long but I get it....IBS is so hard to explain to people who don't have it. We ALL have felt your desperation. How can so many things have cures or meds to control symptoms and yet IBS doesn't, right? You are certainly not alone. I have it for over 20 years and it'sgotten worse the last few. Stress makes it worse. I have had all the tests, diets and nothing! Not in just my head or yours. I am waiting for Linzess to come out---I read December now. I have taken 6 doses of miralax a day and still need to empty. It is all trial and error..somethings won't work forever. Try taking the miralax and stick with it. Right now, I am trying papaya enzyme caplets---chewable, bought them at Walmart---everytime I eat...I think it is helping..also I stopped drinking soda/tonic and have one cup of Heather's IBS fennel tea.. My tummy makes ALOT of noise and it sucks! but ya know what, oh well it keeps certain people away, hahaa..I even took the charcoal caplets---but my poop is still blackish so be careful, lol!!! The high doses of miralax has kept the pains away. I do some exercising....someone mentioned peppermint oil caplets too--thats for the bloating and gas...if you don't like the dr's answers---you take all your medical records to another dr and tell them your desperation---someone will listen! They will believe you and try to help. It's just a work in progress...oh--and if you think your tummy noises and gas are bad---just wait, there will be a boyfriend who will beat it by a mile!


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## anth (Jun 3, 2006)

Okay I had the same sort of issues when I was younger in school (thats when it started) but more so in college. I now wish I had gone to a therapist when it started when I was younger. I had a few tramautic events happen around the time it started which happened at the same time as having 3 courses of antibiotics. Naturally, I blamed it on a physical issue and after 8 years of tests and trying EVERYTHING suggested by docs/this forum... nothing has shifted my symptoms even by 2% (I'm not talking about for example, taking immodium for d and being successful with that... I mean the underlying cause) and all the tests prove I am 100% healthy... and yet my ibs is the worst it has been (each year gets worse).

No one in my family or extended family has this problem and I was not born with it or any stomach issues. For my case, I believe there might of been some upset with the antibiotics and because I was sensitive (emotionally) I made the symptoms a habit by thinking there was something wrong with me (which was very very easy to do at that age) when there wasnt. I gave the condition power and it became a pattern in my subconscious (like looking left and right before crossing a road).
I believe the expectancy of having symptoms is what gives my condition strength. Don't forget the absolute immense power of the brain (especially your subconscious mind) ... People can induce symptoms like dizziness etc when having a panic attack or create anxiety/depression through distorted patterns of thoughts. I'm not saying its in your head or you are to blame!

What I am getting at is... it really helps to talk to someone especially if your having suicidal thoughts about your situation. Hope this helps.


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## catsandcookies (Oct 28, 2012)

Getting Me Down! said:


> Hiya, ive just took time to read your post and it is well written and explained!
> I am in a similar position as you right now i think... Im from England, and turned 17 just two months ago.... but i have suffered symptoms from about 14!
> Just started off having Mushy stools 2/3 times in a morning, then i could go about my day without any problem, school was never really any problem for me. However when i finished school, things also got progressively worse. My anxiety problems have raised, only making my problems worse, i now too have no social life, and left college because i was taking so much time off. I now can go to the bathroom about 5-6 times a day. Would be less, only i never feel empty, like always a incomplete evacuation, but the stool is usually always soft/mushy. I have taken mebeverine and peppermine capsules which have not helped, and now i have Loperamide Hydrochloride 2mg on prescription. I have seen a gastro who thinks it is IBS but i think it really may be a food intolerance, otherwise any medication i try would be of some help!
> What makes it worse is I want to start a relationship but this just instantly puts a halt to that!
> ...


Thanks for your reply. I'm sorry you've had to suffer so long, and I hope you can find what's causing all of this soon. I remember reading online that sometimes the tests they use to diagnose food intolerance are pretty inaccurate, so that's why I went ahead with eliminating gluten and dairy from my diet even though the tests were negative. Right now I'm eating gluten and dairy (but just having a little of dairy and using almond milk in place of cow's milk). I was really strict and careful when I avoided these foods, though; I read and reread every single label, stayed away from foods that could be cross-contaminated, and basically ate minimully processed food that I knew didn't contain any gluten, even trace amounts. Same with dairy. The only thing is, I didn't eliminate them both at the same time, but am thinking about doing it. There's a strong obstacle for me with changing my diet around a lot; my mom starts to worry and nags me every day about it, saying things like, "I really don't think that's what's causing it." or "You can't even eat this, this, this..." or "You're not getting enough variety!" or "Oh, what are we gonna do this weekend? We can't even go out to eat?" (I replied to that with, "You can go out to eat. I'll just stay here and make my own food." but she wouldn't listen). I'm starting to think it may be a soy allergy, because I did start drinking a lot of soy milk when the symptoms started, but I stopped drinking it a long time ago... It may be trace amounts in the food I eat, though.. I don't know, I'll just have to be patient and hope they find something from the colonoscopy, anything. A lot of times I feel like I'm complaining too much, because you're at the age when a new chapter in your life is supposed to start, and this stupid thing is getting in the way of everything. I'm just horrified that I'll keep getting worse to the point of fecal incontinence or something. Then my life will be about 20x worse. That sucks about how it ruined your chances with a boy you liked... I hope someday you finally feel better, hopefully sooner rather than later.


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## catsandcookies (Oct 28, 2012)

dt1070 said:


> ok so it was very long but I get it....IBS is so hard to explain to people who don't have it. We ALL have felt your desperation. How can so many things have cures or meds to control symptoms and yet IBS doesn't, right? You are certainly not alone. I have it for over 20 years and it'sgotten worse the last few. Stress makes it worse. I have had all the tests, diets and nothing! Not in just my head or yours. I am waiting for Linzess to come out---I read December now. I have taken 6 doses of miralax a day and still need to empty. It is all trial and error..somethings won't work forever. Try taking the miralax and stick with it. Right now, I am trying papaya enzyme caplets---chewable, bought them at Walmart---everytime I eat...I think it is helping..also I stopped drinking soda/tonic and have one cup of Heather's IBS fennel tea.. My tummy makes ALOT of noise and it sucks! but ya know what, oh well it keeps certain people away, hahaa..I even took the charcoal caplets---but my poop is still blackish so be careful, lol!!! The high doses of miralax has kept the pains away. I do some exercising....someone mentioned peppermint oil caplets too--thats for the bloating and gas...if you don't like the dr's answers---you take all your medical records to another dr and tell them your desperation---someone will listen! They will believe you and try to help. It's just a work in progress...oh--and if you think your tummy noises and gas are bad---just wait, there will be a boyfriend who will beat it by a mile!


Thanks for your reply. I can't imagine going through this for 20 years, my god... What's Linzees? Which type of IBS do you have? I hope you can eventually find something that works well, even though it's been so long. How do you cope? Are you able to work at a regular job without it interfering too much? That's good you stopped drinking soda, hopefully it helps. I get really frustrated, though, when I go on the internet and repeatedly see articles that say cut down on soda, caffeine, alcohol, fatty foods, etc. because I never drink those things and barely ever eat fatty foods! Plus, when they say eat more fiber and it feels like fiber makes it a lot worse... More grumbling, pains, nausea... Ugh. What tests have you taken so far? Thanks for showing me a bit of the bright side, I just hope I'll be able to get a boyfriend eventually, seeing as I'd probably have a panic attack if I tried to go out with one... Lol. But good luck, and thanks for the advice.


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## catsandcookies (Oct 28, 2012)

anth said:


> Okay I had the same sort of issues when I was younger in school (thats when it started) but more so in college. I now wish I had gone to a therapist when it started when I was younger. I had a few tramautic events happen around the time it started which happened at the same time as having 3 courses of antibiotics. Naturally, I blamed it on a physical issue and after 8 years of tests and trying EVERYTHING suggested by docs/this forum... nothing has shifted my symptoms even by 2% (I'm not talking about for example, taking immodium for d and being successful with that... I mean the underlying cause) and all the tests prove I am 100% healthy... and yet my ibs is the worst it has been (each year gets worse).
> 
> No one in my family or extended family has this problem and I was not born with it or any stomach issues. For my case, I believe there might of been some upset with the antibiotics and because I was sensitive (emotionally) I made the symptoms a habit by thinking there was something wrong with me (which was very very easy to do at that age) when there wasnt. I gave the condition power and it became a pattern in my subconscious (like looking left and right before crossing a road).
> I believe the expectancy of having symptoms is what gives my condition strength. Don't forget the absolute immense power of the brain (especially your subconscious mind) ... People can induce symptoms like dizziness etc when having a panic attack or create anxiety/depression through distorted patterns of thoughts. I'm not saying its in your head or you are to blame!
> ...


Thanks for your reply. What age were you when you started getting these issues? What tests have you taken? And have you ever seen a therapist? I have a lot of issues with going to see a therapist, because I already tell EVERYTHING to my mom, and I've had some pretty bad experiences with therapists when I had the eating disorder... The first one promised he wouldn't tell my parents anything that I told him, and right after the session, he went up to my parents, with me standing right there, and told them absolutely everything I said! I felt so betrayed.. The next one had me play with play-doh all day and there was barely any talking. Plus, no offense to anyone, but it didn't help to have a fat therapist who complained about her weight when she was supposed to be helping you overcome anorexia. The next one was the only one I actually liked, but she seemed a little obsessed with telling me how much of a genius I was... But she helped me convince my parents to let me homeschool. But now she switched offices and insurance won't cover her, so I'm extremely reluctant to try my luck with another therapist. Hopefully you have better luck with them. Wow, three courses of antibiotics at once? What were they for? I'm trying not to let this condition become part of me, because occasionally I get a kind of all right day, but it's hard when it's constantly there and follows me everywhere I go. I'm starting to try some meditation, hopefully it'll help a little bit, if not with my IBS, it'll help me relax a bit. I know the suicidal thoughts aren't healthy, but I usually get that way after yet another test comes up negative and it seems more hopeless that I'll ever feel better. But I just keep chugging along, doing a ton of research online, praying that I'll finally find relief soon so I can get on with life. Thanks so much for your advice, I wish you luck in finding some relief.


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