Irritable Bowel Syndrome and Digestive Health Support Forum banner
1 - 12 of 12 Posts

·
Registered
Joined
·
6 Posts
I am a 32 year old nurse and have been living with IBS ever since I can remember(first memory was at age six). I have been trying to find a DR all my life that can definitively diagnose me with IBS. Although I've been "diagnosed" with IBS, I've never been treated sufficiently nor taken seriously except by the latest one I've seen(and even he had never heard a case so severe, so I was then referred to a Pain Management Specialist after all other options/treatments exausted). I have tried everything and anything anyone can possibly suggest and have had all the tests done that a standard G.I. would check. The colonoscopy was not 100% because both physicians were unable to make it through the entire colon because of a "torturous colon." This has always left me wondering if they missed something. I have also heard of some type of test where you swallow a camera. Has anyone ever heard of this? Who performs it and where? I also no longer have insurance since I quit my job and am going back to school full-time. When I tried to purchase insurance I was denied due to pre-existing conditions.Just to put it lightly, I can relate to those who just want to die sometimes. I'm not sure that the word PAIN can even touch what I experience on a regular. Last night, just some symptoms I can recall are...-almost on the verge of unconsiousness from pain, nausea, and fear even though they happen all the time-hurting so bad I was lying on the bathroom floor and could not even scream-sweating perfusely enough to drench all my clothes and face soaking wet dripping sweat down my chin-face as white/blue as a ghost-(thank God my name does not appear because this one is so embarrasing....) fecal impacted type stool that when it comes out, it's not long until I then experience explosive diarrhea in labor-type pain escalating spurts until it is totally done-finally relief followed by the most dibilitating weakness that usually lasts at least a day or two until my next attackLet me first say that I am almost Vegan now(started this diet about 4 years ago and attacks are a little less frequent than they used to be)in that I do not eat, beef, pork, or dairy(mainly due to food-rast testing helped me to discover these food allergies I have). If i do have any dairy it is very little and a rare occurance. Belladonna(spell?)... don't even bother if your symptoms are like the above. Not to take any of my advice literally, as I am no doctor, but for me, anti-spasmotics just slowed down the process and pain lasted hours longer until I was able to have a bowel movement. Antidepressants.. nope. I won't even bother listing everything. One thing I can tell you is one day I discovered the effects of Ritilin on my IBS. This speeds up motility and thus I would take Tylenol and Ritilin and if taken on time, the process would speed up with less pain and if I was really lucky.. completely stop it. Alot of times I would cut it in half and put half under my tongue to absorb more quickly. Few problems with this... I already take it for a sleep disorder, so if I wake up in the middle of the night and take one I am not going back to sleep!!! Not to mention, usually the amount that would be effective usually causes that annoying "jittery" feeling. And lastly, it doesn't always work... especially when I wake up from them in the middle of the night after it is too far into the attack. Another med (OTC) that SOMETIMES HELPS but does not get rid of the attack is ALKA-SELTZER GOLD(no aspirin... just antacid and electrolytes-and not similar to any other alka product). Last but not least(AND PLEASE DON'T LECTURE ME ON ADDICTION OR COLON PAIN CAUSED BY OPIOD/NARCOTICS...thank you), Lorcet, Darvocet, and other pain killers.... only thing effective for me but cannot take while at work of course. I usually don't have regular bowel movements bcuz of my "IBS" and none of these make it any worse. I JUST GET THE RELIEF I NEED!!! Only problem with narcotics is listed above and doctors are very reluctant to prescribe. Occasionally, even these don't make the cut in time for pain and ER is not an option for the type of pain I experience most of the time. I have gone before when the pain sustained and was unable to go to the bathroom and waited in a ER for hours before getting an injection of Demerol or Morphine....THEN WHAT??? Only more expensive deductibles and bills and so much pain is endured beforehand. Only reason I have been able to live a life with half the quality I do is because of the pills above. And unfortunately I have other painful conditions in which is the reason I am prescribed them in the first place. I have two children, one of which is 19months and I can barely take care of myself when I have these flare-ups.... I'm desperate for answers and I just wish that some doctors could realize just how severe the pain is. The only time I can look forward to eating is when I have a pain pill in hand.... and when I don't, I do not eat much. I weigh little to nothing and I want to be able to eat without worrying... I want to know that when I get my degree I won't have to worry about abandoning my patients to run to the bathroom... let alone the hours of pain leading up to that. I'm afraid I am one day going to die of this. I am afraid I will never live a normal life. I'm afraid of just the next day coming because I know I am probably due for the next attack. I can't live like this anymore! I feel for any of you that deal with anything close to this. I have dealt with embarrassment all my life as a secondary to missing out on so many special occasions due to sitting in a bathroom in excrutiating pain!!!!!!!!!!! I wish someone could help me.
 

·
Registered
Joined
·
34,955 Posts
Well, one thing with the alternating hard stool followed by explosive diarrhea is usually the most important part to break that cycle (and some of the pain that happens when you need to go but can't go until you finally break loose) is constipation prevention. Finding the right amount of fiber (and eating regularly so you are never too empty which makes constipation worse) as well as sometimes using an osmotic laxative to keep things wet enough to move can sometimes reduce that cycle by quite a bit.Unfortunately opiates tend to be very constipating so make that cycle worse, but I can't tell if the main issue is constipation followed by expelling the stool (flushing out) but it sounds that way from some of what you said. If you are using them quite regularly (I know you said not to say this) but they can sensitize the nerve so depending on how often you use them you might want to make sure you take plenty of breaks from the meds even if it is awful and even if you won't take anything else that might reduce the pain because it isn't a perfect control or feels like it may not do much.One issue with vegan diets is they tend to be high in resistant starch and sugars that cause gas. You might consider a probiotic if you have a normal to higher than normal fart frequency. Sometimes reducing the expansion of the colon even by normal levels of gas (14 farts a day) can help. When you cook beans best to cook from dry and do a long soak and cook in fresh water, not the soak water. That can help remove some of the problematic sugars. You might look again at fiber, sometimes too much can be just as constipating as too little and if you regularly go more than 7 days without a BM you probably need a sitz market test. Also if you strain and strain and strain getting a pelvic floor test is probably way more important that a camera pill looking mostly at the small intestine as bloody diarrhea tends to be more what you see from problems up there.While an extra bit of length to the colon (what makes it have extra bends in it) does seem to make constipation worse, you can have that with IBS-D, or even with no symptoms at all. But for those that tend to be constipated they do seem to have to work harder to keep the stool moving and anytime hard stool has to go around a bend in the colon that will be trouble. If you have more bends, you have more trouble spots, but even with a normal length colon the bends under the ribs are often a problem.Have you been checked for celiac? It may sound standard, but isn't always and while it usually causes diarrhea it may be an issue in some constipated types.While antidepressants and antispasmodic (I needed a combo to get pain from a I can't even pretend to be functional level to I still hurt all the time, every day, but now it is dropped down at least enough I can function even if I'm not happy about it) may not do enough on their own, sometimes a combination of them can help, and you may have run through a couple of dozen different antidepressants or just don't tolerate them, or you may not want to take them, but they can be useful sometimes even without complete control. Going from a 10 to an 8 on a scale of pain that runs to 10 can sometimes be the difference between going to work and not being able to work at all.If you are fainting/near fainting from the pain (or sweating and a lot of other odd symptoms people have before they faint) you may want to think about vaso vagal issues. It can be triggered by BM's and by abdominal pain and even if all you can do right now is wear support stockings do your blood pressure can't drop so much it may help.The other thing is if you want to avoid pain the cycle of skipping meals will make the pain so much worse when you finally do eat. The colon becomes active after meals and for most IBSers the more active the colon the more pain they have. Eating every 3 hours with a couple of hundred calories per mini-meal is much better for reducing pain from colon activity than starving yourself all day and then trying to stuff in a couple of thousand calories so you can maintain your weight. If you don't eat you can't keep your weight up.For me the most effective thing is something most people think is silly and refuse to even consider. If you'd like to read about me doing CBT for my IBS there is info in my link in my sig (points down), but if you have no interest in mind-body approaches or hearing they can be effective please ignore the link completely.
 

·
Registered
Joined
·
14,427 Posts
Sorry you are having such terrible pain. I know what you mean. I had 10+, off the charts, stop walking & talking type pain for years. Bar none THE best thing I did to manage that pain was the IBS 100 Audioprogram. It is done by a Michael Mahoney of the UK. He is a specialist with hypnotherpay and has helped scores of people with his programs.See our CBT/Hypnotherapy Forum for more info and/or visit his site:http://www.healthyaudio.com/content/ibs?r=VmPRrcNkAll the best and hope you feel better soon.
 

·
Registered
Joined
·
6 Posts
Discussion Starter · #4 ·
Well, one thing with the alternating hard stool followed by explosive diarrhea is usually the most important part to break that cycle (and some of the pain that happens when you need to go but can't go until you finally break loose) is constipation prevention. Finding the right amount of fiber (and eating regularly so you are never too empty which makes constipation worse) as well as sometimes using an osmotic laxative to keep things wet enough to move can sometimes reduce that cycle by quite a bit.Unfortunately opiates tend to be very constipating so make that cycle worse, but I can't tell if the main issue is constipation followed by expelling the stool (flushing out) but it sounds that way from some of what you said. If you are using them quite regularly (I know you said not to say this) but they can sensitize the nerve so depending on how often you use them you might want to make sure you take plenty of breaks from the meds even if it is awful and even if you won't take anything else that might reduce the pain because it isn't a perfect control or feels like it may not do much.One issue with vegan diets is they tend to be high in resistant starch and sugars that cause gas. You might consider a probiotic if you have a normal to higher than normal fart frequency. Sometimes reducing the expansion of the colon even by normal levels of gas (14 farts a day) can help. When you cook beans best to cook from dry and do a long soak and cook in fresh water, not the soak water. That can help remove some of the problematic sugars. You might look again at fiber, sometimes too much can be just as constipating as too little and if you regularly go more than 7 days without a BM you probably need a sitz market test. Also if you strain and strain and strain getting a pelvic floor test is probably way more important that a camera pill looking mostly at the small intestine as bloody diarrhea tends to be more what you see from problems up there.While an extra bit of length to the colon (what makes it have extra bends in it) does seem to make constipation worse, you can have that with IBS-D, or even with no symptoms at all. But for those that tend to be constipated they do seem to have to work harder to keep the stool moving and anytime hard stool has to go around a bend in the colon that will be trouble. If you have more bends, you have more trouble spots, but even with a normal length colon the bends under the ribs are often a problem.Have you been checked for celiac? It may sound standard, but isn't always and while it usually causes diarrhea it may be an issue in some constipated types.While antidepressants and antispasmodic (I needed a combo to get pain from a I can't even pretend to be functional level to I still hurt all the time, every day, but now it is dropped down at least enough I can function even if I'm not happy about it) may not do enough on their own, sometimes a combination of them can help, and you may have run through a couple of dozen different antidepressants or just don't tolerate them, or you may not want to take them, but they can be useful sometimes even without complete control. Going from a 10 to an 8 on a scale of pain that runs to 10 can sometimes be the difference between going to work and not being able to work at all.If you are fainting/near fainting from the pain (or sweating and a lot of other odd symptoms people have before they faint) you may want to think about vaso vagal issues. It can be triggered by BM's and by abdominal pain and even if all you can do right now is wear support stockings do your blood pressure can't drop so much it may help.The other thing is if you want to avoid pain the cycle of skipping meals will make the pain so much worse when you finally do eat. The colon becomes active after meals and for most IBSers the more active the colon the more pain they have. Eating every 3 hours with a couple of hundred calories per mini-meal is much better for reducing pain from colon activity than starving yourself all day and then trying to stuff in a couple of thousand calories so you can maintain your weight. If you don't eat you can't keep your weight up.For me the most effective thing is something most people think is silly and refuse to even consider. If you'd like to read about me doing CBT for my IBS there is info in my link in my sig (points down), but if you have no interest in mind-body approaches or hearing they can be effective please ignore the link completely.
 

·
Registered
Joined
·
6 Posts
Discussion Starter · #5 ·
Thank you Kathleen for the well thought-out response. I appreciate all your input. I can definitely agree about the bean soaking a "no no." I usually buy canned black beans or small red beans(not kidney)if I eat them. Sometimes I will cook up some frozen black-eye peas as well. Big meals are impossible for me as I usually cannot make it through them in the first place. That is like an immediate flushing/bloating/aura of pain to come type feeling. I know opiod analgesics can cause constipation, but I generally keep stool softeners handy as magnesium citrate(rarely use) and my alka seltzer gold handy. I don't know why but I think my elecrolyte imbalance definitely plays a role in it all. The alka seltzer gold sometimes gives me a painless soft stool or even painless diarrhea, which is a blessing to me. I have interstitial cystitis(constant irritation/cracking and bleeding of inner bladder) and so I constantly am drinking plenty water. Coffee is not on my okay list for I.C. but it helps keep me regular and gives me the energy that I need to make it, so I do drink it occasionally. I do eat a lot of fish now(since the past 3-4 years) which has done me well... better than well. Last week I did the worst thing ever to my body and had some Taco Bell with beef!!!! NEVER AGAIN! I also have to eat many small meals a day because of my hypoglycemia. As far aas the fiber... I am the fiber queen... no meat=less blockage/bacteria back-up. I have frosted mini-wheats often, homemade oatmeal with almond milk, garbanzo beans, plain cheerios, apples, etc. Are there any good fiber suppliments that you know of that don't cause bloating? Gas, I rarely have anymore since I started my vegan diet. Only the meat(excluding the fish) and dairy would cause that for me. I am weak for Indian food, so I do have that pretty often, although I only get the vegetarian things that don't contain cheese. This is the rare occasion I have dairy because some dishes I get contain yogurt which can sometimes upset my stomach, but usually doesn't hurt. I get the spinach and potato dish alot and the yellow dahl(yellow lentils). Sometimes I get the punjabi khadi pakora which is vegetable dumplings in a light yellow yogurt sauce. I crave the chinese curry chicken which I have on occasion. Food is such a blessing and it's nice to enjoy something your body is craving often I can't enjoy these simple pleasures in life without paying a consequence. My BP usually runs around 90/60 on average so I thank you for the support stocking idea... I never thought of that. Although I only feel faint when one of these attacks come on... usually at night. They almost never occur in the morning(between 5-11a.m.) and usually after 3p.m.... maybe that will need to be my new work shift. ha ha. Again, as for the opiod analgesics... they have done nothing but make the pain go away and I would recommend them to anyone(on a personal level) with severe enough pain as mine. Only the type of pain that maybe not be touched by anyone but on their death beds. I had nothing for pain growing up as my folks never took me to the doctor for this. My father had something similar growing up and grew out of it in his teens, so they just assumed as terrible as it was that I had the same thing as he and never was treated. I finally got my first pills for IBS (Levbid, at the time when I was 17)and they worked somewhat. The Levbid would stop the cramping only if I took it when the "aura" came on(on-time)but then the attck would come back the next day with a vengence that could not be stopped as my body was trying to do business!!! sooooo... as a teenager I couldn't even go to a sleepover without the thought lingering in my head if I would have an atteck. I had an attack at every friend's house I had taking up their bathroom for hours and feeling so weak coming out. I was a total drag and missed out on so much! If I had pain meds back then I might have lived a half-way normal life! The attacks then had hard stool followed by explosive diarrhea, so the pain meds have not changed a thing concerning constipation. Growing up with this unknown disease made me a better person in more ways than I know... only because as I sat on the toilet rocking back and forth in pain, I asked why God would do this to me. I "repented" as I thought and prayed and told God I was sorry for anything that I had done to deserve this. I thought I was being punished for something that I had done or that I was going to do. My folks were Catholic and so this is all I knew it could be. There was nothing my mother could do to make me feel any better... she would try soap water enemas on me and give me herbal laxitives regularly which usually brought on an attack. As I sat in the bathroom sweating and maoning in pain she would try to offer cold rags and I would just yell at her to get out.... it hurt so badly! The attacks then would come in bouts... if I got one, I would have one every other day for a round of 3-5 attacks. I sometimes had a break for a week or two or even a month on rare occasions and the process would start over. Like labor pain, they would come on slightly and gradually,.... in increments-- a light cramp.. one hour later another.... a bit stronger-- then i knew! then 30 minutes later... it hurts! every 5 minutes, then every minute, stronger and stronger and painful as anything for 1-4 hours(2 hrs average threshold pain) until I went to the bathroom. I would go about 3x's the amount of normal stool a person could have until I had the explosive diarrhea followed by clear diarrhea like water. Why my folks never took me to a doctor is beyond me. I just know if my child had what I had I would be searching the globe for one until the day I die. Now that I am 32 and they see that I still have this they are boggled. My last dr said he checked me for ciliac and that it was negative. Sometimes my stools are black in spots even when I do not take my iron pills, but never have had any bright red blood until I had my second child which was cause from internal hemarrhoids. I know it's a horrible thought, but at least if I had one of the worst diagnosis's ever(like cancer or something) I would know what it was and I could try and fight it and possibly conquer it! Wouldn't it just be unreal if one day I could be rid of this curse?! By the way, I am no longer Catholic and I do not have a religion. I am only concerned with scientific facts and I only believe in science. I am spiritual in my own way, but I just thought I would mention that fact. Again, thank you for listening and responding and helping! ; )
 

·
Registered
Joined
·
6 Posts
Discussion Starter · #6 ·
One thing I forgot to mention... Phazyme works wonders for gas pain when it does occur,which I hardly have to use anymore. It dissolves the gas right up!!! You may let some out, but at least it won't build up and cause that pressure type gas pain. Also, the day after an attack my gut feels like it's on fire and I stay cramped over all day in pain. I started taking a prevacid and tylenol for that along with the Phazyme for gas and the 3 combo work wonders! Anti-depressants did not work for me. Tried a billion it feels like. I had bad migraines at one point and I was placed on so many of those to try and solve that issue and never noticed any changes as far as my IBS. I was even placed on blood pressure meds to help the migraines and those made me so tired alone, I could not function. Alot of the IBS meds make me tired as well and just make the cramping longer and harder to deal with. Even my speech is affected... I have slurred speech whenever I take those... sounds like I'm drunk! lol
 

·
Registered
Joined
·
14,427 Posts
Like I said above.. The IBS 100 Audioprogram worked like nothing else on my severe IBS pain. Visit our CBT/Hypnotherapy Forum for more info.Hope you feel better.
 

·
Registered
Joined
·
6 Posts
Discussion Starter · #8 ·
Sorry you are having such terrible pain. I know what you mean. I had 10+, off the charts, stop walking & talking type pain for years. Bar none THE best thing I did to manage that pain was the IBS 100 Audioprogram. It is done by a Michael Mahoney of the UK. He is a specialist with hypnotherpay and has helped scores of people with his programs.See our CBT/Hypnotherapy Forum for more info and/or visit his site:http://www.healthyaudio.com/content/ibs?r=VmPRrcNkAll the best and hope you feel better soon.
Thank you, i checked it out. i've never tried hypnotherapy, but i barely have time to breath with my schedule and being a single mom. even when i am in my car i am studying verbally to myself. i will keep an open mind though. thanks again!
 

·
Registered
Joined
·
34,955 Posts
Do you sleep more than 20 minutes every night? You can listen to the hypnotherapy as you fall asleep at night and many people find it also helps them sleep better as well as helps with the IBS.If you only go to bed for less than 20 minutes a day, you won't have time.
 

·
Registered
Joined
·
2 Posts
Hello, I'm so glad I found this forum!!, luckily I've only had 4 episodes so far from IBS without knowing what it was until last night. While at work (i work GY shift)I suddenly had bloating and discomfort on lower abdomen from a scale of 1 to 10 say 6, after 20 minutes it went up to 10+ suddenly I couldn't walk, stand or bent from the pain, I was hardly talking, I started to feel nauseous, I have 2 kids and know what child labor pain is, so to be honest this is such a pain and worse!! never in my life I had cried literally cry from pain until yesterday, I didn't know what it was, I thought maybe vary bad menstrual cramps, so I had no diarrhea or constipation just an unbearable I'm going to shoot myself pain, I drove home crying, took some strong pain medication and today went to the doctor's, now according to the doctor and the tests that were done, I have IBS triggered by stress along with neurodermatitis, we are waiting for additional test results due next week but in the mean time I'm left with this horrible experience that most likely will occur again (since I have to avoid stressful situations, yeah right nowadays who can?) Now I'm afraid that people around me won't understand what I'm going through
 

·
Registered
Joined
·
6 Posts
Discussion Starter · #11 ·
Hello, I'm so glad I found this forum!!, luckily I've only had 4 episodes so far from IBS without knowing what it was until last night. While at work (i work GY shift)I suddenly had bloating and discomfort on lower abdomen from a scale of 1 to 10 say 6, after 20 minutes it went up to 10+ suddenly I couldn't walk, stand or bent from the pain, I was hardly talking, I started to feel nauseous, I have 2 kids and know what child labor pain is, so to be honest this is such a pain and worse!! never in my life I had cried literally cry from pain until yesterday, I didn't know what it was, I thought maybe vary bad menstrual cramps, so I had no diarrhea or constipation just an unbearable I'm going to shoot myself pain, I drove home crying, took some strong pain medication and today went to the doctor's, now according to the doctor and the tests that were done, I have IBS triggered by stress along with neurodermatitis, we are waiting for additional test results due next week but in the mean time I'm left with this horrible experience that most likely will occur again (since I have to avoid stressful situations, yeah right nowadays who can?) Now I'm afraid that people around me won't understand what I'm going through
hello nyx! im so glad you have shared your story. i can honestly say i know how you feel. i wish there was something i could do to help you. sometimes i'll go and volunteer for different health organizations- it makes me feel better to know that i'm helping other people that are suffering from other things. i even started volunteering on a chair for the chrohn's and colitis foundation last year, but after having a baby and already being a single mom of another child, it was too much to juggle and i had to step down. i did help out when i could and i will eventually try again once i grad from nursing school. in the meantime, i will just go to a fundraising run/walk here and there when i can. this is something you might consider. channel your strength, will to get better, and hope that you have into helping others. the exercise it gives you will help you and your ibs as well. exercise of course will not cure you, but am aware first hand that it can reduce stress and keep bowels active and blood flowing enough to cut down the number of attacks that you have. im disappointed in myself for not staying more physically active... maybe if i can organize being a new mom again and school better this coming semester i will be able to write you and tell you things may be improving for me. i hope so much that this little bit of advice might help you even if just a smidgen. also, have you had the blood food-rast testing done ever or even recently? sometimes food allergies(maybe that you may not of even previously had) can trigger an attack. it may also cut down the number of attacks you have. i wish there was a "cure" but i also don't believe there is such a thing until one day the "unknown disease" for ibs is discovered. hope to ttys~~ u take care!! much luck to you! ; )
 

·
Registered
Joined
·
4,570 Posts
Your story reads much like mine. Tried every drug, diet, supplement, etc. Housebound with severe refractory IBS since 1983 - raised my kids thru the bathroom door - took experimental meds, you name it, most likely I was on it. Belladonna included - the tincture in the bottle - special order. Gave me nice dialated eyes - that's it. In emergency room, then admitted with NPO except donnatal for barium X-Rays - fastest transit time even with the meds. Begged my gastro for nutritional feeding tube to quit eating altogether, he said no. What worked - the hypnotherapy BQ and Kathleen mentions. If you just allow about 25 minutes before you drop off to sleep for about 100 days, you can do it - May not be your way forward, however, because you are very exacting and detail oriented regarding your IBS - I used to be - once I let go a bit - I was able to work with the program and get relief - not saying it works for everyone, but it has a great track record (since 1998 and mostly positive feedback overall. Yes, I dealt with what you describe - curled up in the fetal position for HOURS on end - shaking in pain, crying to God for relief, just about everything you mention. It was agony. Am I cured? No. Am I better - absolutely - the few 'attacks' I have now I can get thru - and I do not take any RX meds for IBS, no diet, etc. But do your homework - read all the info you can - ultimately you have to decide what method will work best for you - and those who reply to your thread here, will give you info on their journey.All the best to you - hope you find your way ... take care.
 
1 - 12 of 12 Posts
Top