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Hello all,

Starting 4-5 months ago, I have been plagued with horrible stomach pains. One night I had a fever and went to bed, I awoke early in the morning feeling poorly, by 7 AM the pain escalated to unbearable levels. I have never felt such a pain in my life, I was unable to move and get medicine. I felt like I had a horrible case of dirreaha, yet no stool was coming out. I strained and strained, but the more I strained the worse it got. My body was shaking from the effort and I was getting hot and cold flashes.

 Eventually, I was able to call for help and go to the doctor... This horrible pain would not let up for a week. My stomach was constantly squirming and rumbling, I could not sleep, I could barely eat, and the act of sitting down was nearly impossible. I would pace around the house, only able to get some pain relief from walking.

Since that first flare up, I would have a wide range of symptoms and other flares up. I have been tested for most things and have had multiple tests run. I had an ultrasound, CAT scan, blood tests, stool tests, and colonoscopy. Only three things of relelvance have been found, I read positive for some type of imflammation, my stomach had some minor bleeding (I am taking medicine to treat it), and there was blood in my urine which could suggest Endometriosis.

My symptoms vary. My flares ups are the most debalitating. I have had 8 since the start of this, only 3 have contained dirreaha. The others felt the same way but contained no change in bowel. They are unbearable, and the act of relieving myself furthers my pain. I feel much better pinching my cheeks and pacing, than if I were to go to the bathroom. I have been taken to the ER because of the pain, yet they are unable to do anything. In my most recent flare up, I took multiple medications, all of whom were unable to stop the pain.

In the long run, when the flare ups are not an issue, I am constantly having stomach troubles. My stool is always soft, sticky, and horribly smelling. It isn't dirrreaha, but it isn't regular stool either. My lower right side of the abdomen spasms periodically, I feel it twitch and spasming especially after major episodes. I have lost over 20 pounds and have trouble eating. Not only this, but I constantly eat, I eat 5-6 meals a day and I am unable to put on any weight. I am constantly drained and dizzy when I rise to my feet. I am awoken in the night because of the pain. Ocassionally, I find blood in stool, othertimes mucus, undigested foods, and or fat.

Since the start of this, I have gone to two GI. The first, diagnosed me with FAPS and told me "Deal with it". The second and most recent, has diagnosed me with IBS-D.

I am not sure what to make of the diagnosis. It doesn't make logical sense to me. From the start of this, my general doctor has been treating this as if were IBS as we run the tests. So I have done the LOW FODMAP diet, which helped some but has done little to stop my flare ups. I have cut out dairy and gluten, my meals are also much more balanced. I have no stress in my life whatsoever. In fact, my flares come out of the blue. I also have tried acupuncture and relaxation techniques all of which improved my mental state but have done nothing for the pain. I am constantly taking ant-spasm medication to control my pain. I keep a food journal and I exercise multiple times a day.

I am running out of options and I am starting to become depressed. When it flares, the pain is indescribable... All over my lower abdommen... I cannot sit still.... In fact I writhe. I know my mental state has a lot to do with the matter, and I remain calm, I try to coach myself like I am a kid again. But after hours of this pain, where my body is shaking with exhaustion, it starts to look gloomy. I have tried breathing exercises, I have even tried massaging my stomach, and using steam (heat). None help. And that is what is the most frustrating. I keep getting told the pain is not real, that I need to get over it, yet no matter what I do to care for myself and fix the problem, I cannot control this unbearable pain.

Not only has it impacted my life, but it is ruining it. I try my best, don't think I'm controlled by it. But I am sick so often, I am unable to do my schooling. I can barely leave the house on most days. When I feel well, I jump on it and go out and try to catch up on my activities. I like to live in the moment, that is the only reason I have gotten through it thus far. It is just horrendous when the moment is almost always painfull. I really would like to feel somewhat better again.

Do any of you guys have any ideas of what this is? Is IBS so crippling?

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16 Replies

  • Posted

    What did the doctor say about the blood in your stool?  Were any haemorroids or fissures found and was IBD mentioned since inflammation was also detected?  Blood is not an IBS symptom but it can occur if you have fissures or haemorroids.
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    • Posted

      I do not have fissures or hemorroids. I had some minor upper GI bleeding which shouldn't have caused the bleeding I saw.

      None of my doctors have been able to figure out where the blood is coming from. It is bright red, and tends to be formed with the stool. It is in my bowel movements, I do not have any blood when I wipe.

      IBD was not mentioned.

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    • Posted

      No, they have not. One of the medications I am on is supposed to stop the upper GI bleeding and prevent ulcers.

      As for the blood in my urine, it is a shaky subject. My doctor has only been able to find blood in my urine during menstration. (I was careful, but you never know there could have been a mess up). I have long had painful periods and some of my GI symptoms collaborate with my period. So they were just speculating if it could be something like Endometriosis.

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    • Posted

      Hi Roois,

      I had endometriosis, it can be very painful and last 3 weeks out of 4 in yr cycle. Best way to confirm is with a laparoscopy.

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    • Posted

      My doctor did not want to do a proocedure like that on the off possibility. Instead, she has me on birth control. Is it true that birth control may be able to help something like Endometriosis?
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    • Posted

      Hi Roois,

      I am not a doctor, but from my experience, I would say no...I had to have drug to stop my periods so that the active spots of endometrium shrunk.

      If you are on the pill without having a break for a period, then I suppose it's doing the same thing.

      The thing is how can any doctor treat you for anything if they don't confirm it first.

      You should go back and be directed and tell the doctor you want to know what this is, you would like tests.

      It's not right that you should continue in pain, while they gaff about trying things out on you.

      If it's affected ting your life badly, you need to be firm with them. Don't worry what they think, that's what they are there for.

      I had endometriosis for 10 years and has several procedures including laser treatment, mainly to stop the pain, but I wanted children, Iuckily I have three.

      It takes a long time to get a diagnosis with endometriosis, you have to persevere.

      Oh and by the way, I used to get bad bowel pain and loose stools at the start of my periods. Buy yourself a book and have a read. Reetah x

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    • Posted


      Thank you for your message.

      You have a very fair point. It is not fair to be tested on. However, I have my doctors stumped. My first gastro told me to "Live with it" and sent me on my way. My symptoms.... They don't fit anything very well. And my general doctor is unsure where to send me. She wanted to test me further for endometriosis but my symptoms flared suddenly and she sent me to a GI who said it was IBS.

      I don't know IBS. But I have never thought it to be so severe. I have been in constant pain for months, and for some reason, it flares suddenly to indescribable levels. I read a lot on IBS-D and the panic it causes for people to go out. To have an attack outside of the home. I honestly could care less, if you must go you must go, the problem is the pain. I have never been in so much pain and it frightens me to think about. I have no regard for self control or preservation. My last flare I nearly overdosed on pills trying to stop the pain. I had done everything I could to remain calm and relaxed... In fact my mind was calm, I managed to control myself and call for help. But my body was not able to follow.... I could not sit still, and I writhed with the pain.

      The Endometriosis was mere speculation on my part. My doctor diasgreed with me to start. I just remembered a month or so before becoming so terribly ill, I went in complaining of horrid period cramps. My cramps were becoming unbearable, I lived on pain killers in order to get through them. They extended before and past my period, and didn't seem normal to deal with. My friends had a few bad days but never to this extent. I was told to take more pain killers and be on my way. Cramps are normal afterall.

      It wasn't until recently I noticed some odd symptoms. On my period, I have painful urination. And secondly, I have small hardened lumps on the right side of my abdomen. They are extremely small and often hard to find. But the last time I got my period, I felt a throbbing pain in my lower right abdomen where these bumps are. I tried ignoring it, but out of nowhere it exploded to unbearable levels. And then it was completely gone. The next few days the area was sore but soon resolved.  

      I am no doctor.... But could that have been a cyst?

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    • Posted

      IBS can be very severe.  I had constant, very bad stomach pain for three and a half months along with nausea, constipation and loose stools.  I started going the doctor on the second week of my pain.  It took three and half months to diagnose IBS. I was put on urinary antibiotics although I tested negative for a UTI just in case it wasn't showing up. I felt much worse on the medication and my pain got no better. Stool tests and an ultrasound turned up nothing too.  I was tried on Mebeverine to see if it was IBS.  Again I felt immediately worse with no change in stomach pain.  I had to discontinue the tablets.  When it was finally confirmed I had IBS, I tried Buscopan and felt much better.

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    • Posted


      Get some proper tests done to check out IBS, as Pippa says cramps can be very painful and wind and all that goes with it.

      But also you can get very similar symptoms with endometriosis, involving your bowel and period cramps. Yes you can get cysts of endometrium, and they react at period time (they have little mini periods themselves)

      But you won't know until you have some investigations done. See your doctor and demand it, it's your right.

      You can't keep on like this. X

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