# After all of it, they say IBS is to blame



## WantToBePainFree (Jul 4, 2011)

Hi everyone... Here is My Story.I have been having right sided lower abdominal through the back into hip pain for two years now. It feels like someone is taking an arrow and shooting it through my stomach and its coming out of my back and all while my entire right side is in a vice grip being squeezed. Cramping pain that stops me dead in my tracks. I've often stopped and sat down on the floor waiting for it to go back to it's "usual" dull ache. CT Scans, Sonograms, X-Rays, Gallbladder function test, Endoscopy, Colonoscopy = NOTHING. I have Kidney stones. Had them for as long as I can remember. Had 2 lithotripsys to break them up (one in each kidney) over 10 years ago. They came back again. So when the right sided pain began, my PCP sent me for a CT Scan (Checking for appendicitis) showed I have stones. Told me it's your kidney stones causing the pain, go to a urologist. Urologist sent me for extra testing and came to the conclusion it ISN'T the stones causing the pain because the stones aren't in the tract, they are in the kidneys and that doesn't cause this severe pain - go to the gynecologist it could be ovarian cysts. Went there, had internal sono - showed small cyst on LEFT ovary, right ovary looks fine.... The pain isn't coming from ovary. Go see a Gastroenterologist. Scheduled me for endoscopy and colonoscopy. Both fine. Said colonoscopy shows some extra twists and turns in the colon and that can cause some pain - Diagnosis IBS. BUT adds that the pain I'm having doesn't 100% say IBS because of the location and the fact that after I go to the bathroom the pain is still there, but being that all other causes have been ruled out, IBS is the only answer. I don't know what to believe. I spend every day of my life thinking my appendix is about to burst. I go from what I have now learned is IBS-C to IBS-D every few days. I feel like I'm gonna puke fairly often and now I'm also noticing the pain is different during different times of my menstrual cycle. I brought that up to my gyno and she said it could be ovulation pain, but obviously that should only be a few days a month. I'm lucky I get a few days a month where I can actually crack a smile and enjoy my life because the pain is back to it's dull ache. I notice the pain intensifies with exertion (exercise, cleaning the house, long walks, etc) and when I eat. WTF?? And when it's unbearable, if I lay down flat in bed for like 15 mins, it subsides to the dull ache again. But the second I try and do anything strenuous or eat something it's back in full force. Then there is sometimes a day here and there where it lets me live a "Normal" life. I can actually go for a bike ride, have some lunch and actually enjoy myself and have hardly any pain. I also feel pain when poking around my lower right abdomen. It feels like it's sore. Almost like a bruise. I also want to add - There was one point 2 years ago I was going on a cruise to Belize and the pain was in full force and of course there i was afraid my appendix was gonna burst while in a jungle in belize, my doctor sent me for a CT scan and it showed some swollen lymph nodes in my abdomen and what seemed to be some thickening of the wall of the appendix (they said scar tissue from previous flare up). So there it was, I would get my appendix out and be home free. Even met with a surgeon and everything. Then like 2 weeks before the dr. was gonna schedule it, they sent me for another CT scan to be sure because the first one KINDA showed thickening they wanted to be sure. And this one showed an absolutely normal appendix. And every CT scan after that (there have been at least 3) has shown a perfect appendix. NOW WHAT? Do I say ok it's IBS even though it doesn't "fit" what IBS is known to be? Or do I say these people are just tossing me from Dr. to Dr. pointing fingers and my appendix is a ticking time bomb? <sigh>


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## Kathleen M. (Nov 16, 1999)

IBS often causes pain after meals or with strenuous exercise.While "Pain goes away after a BM" it isn't the only pain pattern and isn't required. It is just really common (like maybe 70% or so of IBSers with rectal hypersensitivity) and not common with other things so it is diagnostic, but like I said not the one and only every IBSer must have this kind of thing.Has anyone discussed any medications with you? Antispasmodics, low dose antidepressants, or mind-body therapies to control the pain?


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## WantToBePainFree (Jul 4, 2011)

Kathleen M. said:


> IBS often causes pain after meals or with strenuous exercise.While "Pain goes away after a BM" it isn't the only pain pattern and isn't required. It is just really common (like maybe 70% or so of IBSers with rectal hypersensitivity) and not common with other things so it is diagnostic, but like I said not the one and only every IBSer must have this kind of thing.Has anyone discussed any medications with you? Antispasmodics, low dose antidepressants, or mind-body therapies to control the pain?


No they never offered me any medications. They just said high fiber diet and maybe even take a supplement. The list of foods they gave me to eat is already part of my everyday eating. I tried keeping a food diary to see if certain foods were triggering anything and nothing. It just "happens" Like I said mostly with eating or any sort of physical exertion. I'm going to ask my Dr. about antispasmodic medication because when the pain is severe, it feels like a wicked charlie horse kind of cramping in my right side. It comes on really strong, I breath through it and it relaxes and then keeps happening over and over again until I lay down for a little while and then the cramping part kinda subsides and it goes back to just pain. Thank you for your reply.Have you every heard of people getting relief with acupuncture? I was considering that too. I'm kind of out of options. Painkillers don't work. Nothing does.


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## Kathleen M. (Nov 16, 1999)

Some people find acupuncture helpful, just hard to guess which ones will. There are also some chinese herbal formulas that seem to help some people with IBS so if you find a person that does both they may be able to help you with that as well.


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## WantToBePainFree (Jul 4, 2011)

Kathleen M. said:


> Some people find acupuncture helpful, just hard to guess which ones will. There are also some chinese herbal formulas that seem to help some people with IBS so if you find a person that does both they may be able to help you with that as well.


Thank you


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## Lookin'foraLife (Jan 2, 2009)

Even if no pain killers have helped you, believe me, Xanax will. That is if you can find someone to prescribe it for you. At my VERY WORST which wasn't far from your description it was the ONLY med that took the pain away.However, I only took it twice because it made me feel like a zombie and it's a serious medication you don't wanna get hooked on. But...the relief from the pain! That was amazing...As for food: Trying to eliminate foods one by one to see what's upsetting you doesn't work.You have to COMPLETELY change your diet to include ONLY foods that are easy to digest/anti-inflammatory to get relief by diet. Example: Oatmeal, avocado, quinoa...Stick to it exclusively for a month and then tell me it didn't help....hopefully it helps!Lastly, what eventually mostly fixed my devastating abdominal pain was a supplement I stumbled upon by mistake.I swear by it through no doctor can explain why it works exactly: L-ORNITHINE from Solgar. Take it every night before bed: Begin with 2-4 tabs of 500mg, raise it for a day or two to 6 tabs, return to 4 tabs until you feel an improvement, then try to get it down to 2 tabs a night.The diet and L-ornithine really improved my life (thank G-d!) and I hope it can give you some relief.


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## artemisleigh (Aug 7, 2011)

Definately ask your Dr about medications. I don't really need to take it anymore, but I didn't get my symptoms under control until my Dr prescribed Levsin (an antispasmodic). He also had me start taking an OTC probiotic (Phillips Colon Health) and switch to a high fiber diet. Even then, I was still taking painkillers to get me through each day for a while.My doctors also originally thought it was just an ovarian cyst, but it turned out my IBS is mostly affected by hormones. I had several months where the last two weeks of each cycle were hell. I also took a class on "Functional Bowel Problems" and found out that something like 75% of all IBS sufferers are women.Even though I have yet to find any food triggers for my IBS, keeping a food diary has been very helpful in making sure that I am actually getting a minimum of 20-25g of fiber each day (which is harder than I thought it would be). My personal lifesaver was a recipe I came across for homemade granola which starts with old-fashioned oats (mmm...soluble fiber). That's my go-to snack, particularly through the more difficult weeks each month. Six months ago, I thought I was just going to die from the pain, now I'm pretty much pain and symptom-free and I've even lost weight because I'm eating better. Just keep on looking until you find what works for you. Best of luck!


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## jacky swift (Aug 6, 2011)

My mum spent years having tests - was it kidney stones or her gall bladder or something else? She always had her results come back fine. Then I found the following information and passed it on to her. We think she has bile salts from the gall bladder leaking into her intestines causing "IBS-D". However she is now better thanks to the following information and is now fine. I do hope this is of help!Hope this may help you it helped my mum back to normal. This is one of the blogs I read and sent to my mum who said this was her, she actually cried when she read it and said she was beginning to worry it was all in her head. Review by CarolynI have been suffering from diarrhea since I was 18 y...ears old. It started not long after I was prescribed a pretty nasty antibiotic, and the doctor at the time told me to eat yoghurt and I would be OK. Later that year I went to a gastroenterologist who basically gave me a lower colonoscopy and told me all was OK and that I should see a psychologist as it was obviously all in my head. After that, I gave up trying to get help.I suffered with the condition, which got worse and worse at the age of around 33 following a particularly stressful time, for over 20 years. Explosive diarrhea, particularly after eating, weekly (at least) accidents, planning my routes according to where I knew public toilets were, being too scared to leave home on numerous occasions, wearing sanitary pads just in case, not eating at all during the day, going through packets and packets of Imodium each week etc etc, until I just couldn't do it any more. I finally decided, at age 39, that I was going to go back to a doctor, and not give up until I had an answer.I ended up being referred to a new gastroenterologist, who immediately did a full colonoscopy. I remember sobbing and sobbing when he told me it was clear! I was so disappointed that I didn't have an answer. We then started a food diary, to no avail. There was no pattern, except that it usually happened within 15 to 30 minutes of eating anything - and accidents were getting more and more common.It was then he suggested Questran. I remember the first day I took it, I took my kids to the beach to have fish and chips, and made sure that we were right next to the public loo for when the inevitable explosion occurred. I remember looking nervously at the loo, hoping that it was empty when I needed it, waiting...waiting...waiting...and nothing happened! On day one of taking Questran, it had an effect!I have now been taking Questran for over three years, and it is my lifesaver! I don't mind taking it one bit - it isn't the most pleasant experience, but it has given me my life back.One big thing here is that I am one of the few who hasn't had a gallbladder removal! It just happened. So, if you are reading this and you are thinking you don't fit the bill because you still have your gallbladder, think again. It can happen to anyone!Try this web link for more info http://www.irritable-bowel-syndrome.ws/questran.htm


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## Caitk1216 (Aug 4, 2011)

Wow, your experience sounds A LOT like mine. I also have the horrible pain, but it's on my left side. I have to kneel or sit on the floor every time it happens as well and it eventually subsides to a dull ache. I've also found that if I lay down, it's slightly better and eating definitely makes the pain happen! The only difference is, my pain is higher up (under my left rib cage). I've also had several tests done and everything's normal. Frustrating, right?!However, someone on here recently suggested to me that I may have a bacterial infection or a parasitic infection. I know it's scary to think about, but I researched it and ALL of my symptoms fit. If you were in Belize, you could have picked something up. I have noticed a connection between people diagnosed with IBS and this type of infection. You might want to consider having someone test you for H Pylori and other similar infections. I'm getting an endoscopy on Tuesday and the doctor's going to check for it while he's in there. If you have something like this, all you need is antibiotics (your doc prescribes).I could be totally off, as I'm not a doctor lol. But, after someone suggested it to me I found that it could absolutely be a possibility.Do ever get headaches, feel tired all the time, or have you lost any weight?Good luck with everything and I hope you feel better soon!


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## AIRPLANE (Mar 15, 2004)

WantToBePainFree said:


> Hi everyone... Here is My Story.I have been having right sided lower abdominal through the back into hip pain for two years now. It feels like someone is taking an arrow and shooting it through my stomach and its coming out of my back and all while my entire right side is in a vice grip being squeezed. Cramping pain that stops me dead in my tracks. I've often stopped and sat down on the floor waiting for it to go back to it's "usual" dull ache. CT Scans, Sonograms, X-Rays, Gallbladder function test, Endoscopy, Colonoscopy = NOTHING. I have Kidney stones. Had them for as long as I can remember. Had 2 lithotripsys to break them up (one in each kidney) over 10 years ago. They came back again. So when the right sided pain began, my PCP sent me for a CT Scan (Checking for appendicitis) showed I have stones. Told me it's your kidney stones causing the pain, go to a urologist. Urologist sent me for extra testing and came to the conclusion it ISN'T the stones causing the pain because the stones aren't in the tract, they are in the kidneys and that doesn't cause this severe pain - go to the gynecologist it could be ovarian cysts. Went there, had internal sono - showed small cyst on LEFT ovary, right ovary looks fine.... The pain isn't coming from ovary. Go see a Gastroenterologist. Scheduled me for endoscopy and colonoscopy. Both fine. Said colonoscopy shows some extra twists and turns in the colon and that can cause some pain - Diagnosis IBS. BUT adds that the pain I'm having doesn't 100% say IBS because of the location and the fact that after I go to the bathroom the pain is still there, but being that all other causes have been ruled out, IBS is the only answer. I don't know what to believe. I spend every day of my life thinking my appendix is about to burst. I go from what I have now learned is IBS-C to IBS-D every few days. I feel like I'm gonna puke fairly often and now I'm also noticing the pain is different during different times of my menstrual cycle. I brought that up to my gyno and she said it could be ovulation pain, but obviously that should only be a few days a month. I'm lucky I get a few days a month where I can actually crack a smile and enjoy my life because the pain is back to it's dull ache. I notice the pain intensifies with exertion (exercise, cleaning the house, long walks, etc) and when I eat. WTF?? And when it's unbearable, if I lay down flat in bed for like 15 mins, it subsides to the dull ache again. But the second I try and do anything strenuous or eat something it's back in full force. Then there is sometimes a day here and there where it lets me live a "Normal" life. I can actually go for a bike ride, have some lunch and actually enjoy myself and have hardly any pain. I also feel pain when poking around my lower right abdomen. It feels like it's sore. Almost like a bruise. I also want to add - There was one point 2 years ago I was going on a cruise to Belize and the pain was in full force and of course there i was afraid my appendix was gonna burst while in a jungle in belize, my doctor sent me for a CT scan and it showed some swollen lymph nodes in my abdomen and what seemed to be some thickening of the wall of the appendix (they said scar tissue from previous flare up). So there it was, I would get my appendix out and be home free. Even met with a surgeon and everything. Then like 2 weeks before the dr. was gonna schedule it, they sent me for another CT scan to be sure because the first one KINDA showed thickening they wanted to be sure. And this one showed an absolutely normal appendix. And every CT scan after that (there have been at least 3) has shown a perfect appendix. NOW WHAT? Do I say ok it's IBS even though it doesn't "fit" what IBS is known to be? Or do I say these people are just tossing me from Dr. to Dr. pointing fingers and my appendix is a ticking time bomb? <sigh>


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## AIRPLANE (Mar 15, 2004)

My pain, which came on suddenly in 1984 while doing strenuous, very physical work, also was on my right side and it extended deep into the pelvis. It felt like a twisted, wrap-around type feeling from slightly around my back- kind of behind my liver and then it came around the front and extended downward.I had numerous tests, lots of CTs and ultrasounds and even some surgeries- myomectomy, vaginal hysterectomy, right adrenal gland removed -which only made things worse- most likely due to adhesions which remain to this day and I think that due to inflammation I had formed adhesions even before any of the surgeries as I always have felt a lot of tightness in my abdomen, chest and pelvis. I believe this to be the case because my first surgery was an exploratory lap just to take a look around and the tight sensations along with the pain and GI issues mysteriously went away for a very brief period but then came right back which is indicative of adhesions but most doctors won't talk about them either because they are too difficult to treat successfully or they refuse to believe they can cause pain and problems. One time, when a gynecologist ordered yet another CT scan, I told him I'd already had that test and would like to try an MRI but he flatly refused-even when I offered to pay for one myself. It made no sense to me to go through another CT when none of the other ones had shown anything, not to mention the radiation that comes with them.I finally had an MRI a few years ago thanks to a chiropractor. The report mentioned a mass which was most likely an abdominal lipoma- it said that this area on the right was a common location for benign lipomas. I mentioned the lipoma to doctors but they never wanted to deal with it.I had another MRI this year due to a sciatica-type problem in my left buttock/pelvis/thigh area with nerve pain/burning/stinging/tingling- a problem I developed after my vaginal hysterectomy. It showed 2 black dots which I guess were inflamed nerves and also the lipoma mass on my right side. This time I got to see it on the screen- not just read the report. It looked just like a whale with a tail- the head was wrapped around my right side near the liver and the tail extended down into the pelvic area. I decided to have it removed and it was a pretty simple procedure- not much pain and I went home a couple hours afterwards. The surgeon said that it went deep into my abdominal wall muscle.


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## AIRPLANE (Mar 15, 2004)

Also, just wanted to say that having the lipoma removed felt good but of course I still have the adhesions- pelvic, abdominal, sigmoid which I go to a massage therapist for which can help some but never enough. My massage therapist also swears that she can see evidence of an abscess- buttock, thigh or pelvic- which is causing the sciatic-type issues on my left side but so far no luck in getting a diagnosis for that. It wouldn't surprise me though because I had definite symptoms of a fistula after the hysterectomy but doctors scoffed at that possibility because I didn't leak any liquids or solids- just gas which I have since learned is entirely possible with fistulas. I still get intermittent leakage symptoms- just nowhere near as bad as they were the first few years after my hysterecomy. And from what I've read, fistulas are associated with some type of an abscess which creates the abnormal opening between two organs.Mainly, just wanted to point out that the lipoma apparently didn't show up on any scans other than the MRI. It literally felt like a belt wrapped around my right side. I can still feel the wrap-around feeling from where the lipoma was but there is less pressure. Since I had it for so long I don't know if the muscles and ligaments will ever straighten out. But that wrap-around sensation was unmistakeable to me yet every doctor swore that there was nothing there when there was indeed something there!


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