Hi,
I am new posting to the forum but have been reading posts for some time.
My story in a nutshell is this:
Had some occasional night time rectal cramps episodes (proctalgia fugax...but didn't know it was called that at the time) for a few years. Also had some bloating issues off and on, floating stools, piles off and on, possible anal fissures which mistook for flaring piles.
However, just over 2 years ago I was prescribed NSAIDs for tendonitis. I then one day woke up in agony with anorectal ("Backside") pain and to cut a long story short had this really bad for almost a year undiagnosed (though saw a colorectal surgeon - was useless) and could not sit for the same length of time, plus had an exacerbation of GI symptoms, and gained some new ones. And "backside" pain had coincided with a dental abscess. Towards the end of this very bad year I had a minor op to remove the abscess and was given co-amoxiclav, and NSAIDs. Not wanting to take the NSAIDs because I believed they triggered the "backside" pain I took bromelain instead. I got some relief after taking these. It took a while for the penny to drop but then I realised I must be suffering from some sort of infection and inflammation in my gut. But the GP would not believe that because the sigmoidoscopy was normal - though no biopsies were taken lol. And I know from my research that biopsies are crucial because you don't always see inflammation, or it might be below the mucosa. This plus the fact that my ESR always comes back "normal". And it seems most GPs can't think outside the box!!
After realising I was suffering from some sort of infection and inflammation of my GI system I started taking oregano oil and natural anti-inflammatories. I thus was able to sit and keep my symptoms to a moderate bearable level for the next year. I had seen a GI doc but they were parroting what the colorectal guy and GP said. And they missed an important test result for a year because of being "blinkered" (ANA test held for a yr almost and GI doc said all tests were normal!!). They also missed the report that said I have a minor rectal intusussception - because tagged along with the colorectal doc who had missed it though I told him I have some functional difficulty!!!
Now two years on, and the GI doc finally finding the ANA because I wrote to them in desperation after getting discharged with all my GI symptoms still in place. I am way too unassertive. I then got a rapid referral to a rheumatologist and just (few days ago) got diagnosed with auto-immune connective tissue disease (Undifferentiated - though looking like Lupus at least because of antidsDNA, and sky high ANA - not sure why I didn't get the Lupus diagnosis yet?!). But they are finally taking me seriously. I think I have had the Lupus for at least 14 years - lots of symptoms way back.
Got a referral coming up to a new GI doc. My issues now have got much worse in the two years because I must have needed immunosuppression of some sort and/or because I might have celiac disease.
My main GI issues are now (most of which were there in that dreadful first year):
* backside pain which is being managed with a ton of natural anti-inflammatories but still flares sometimes, particularly when stressed, and when menstruating.
* stools: some floating, some hard (especially in yr 1 after NSAIDs), mostly pale, mostly can see gas bubbles coming out of them in the toilet bowl.
*Got parasitised in yr 1: pinworms for 5 months, cat (flea) tapeworm - self-treated for both because of embarrassing nature. Suggestive of ill terminal ileum maybe??
* tendency to hard stools, but sometimes diarrhea
*smelly stools most of the time
*mucus with stools when hard, occasional blood when flaring bad
* stool miscroscopy on a holiday last year (looking for answers) suggested malabsorption
* gastritis?/silent reflux?? with maybe mild pancreatitis ? - off and on (GP never diagnoses so I have to diagnose myself) - symptoms:swallowing difficulty (food, and sometimes water , severe pain around sternum, some upper GI pain, nausea, lack of appetite. Get no taste of acid, very little burping, but hear a whizzing sound in my neck & upper esophagus quite a lot - at night too. This really came on in the last year. DGL licorice has helped somewhat. *edit*Forgot to say an upper endoscopy with biopsies was normal but I was not flaring bad with swallowing difficulties and pain at the time of the test.
* fairly fast food turn around (transit) but yet have a tendency to hard stools??? strange? timed this to be around 11 hours.
* some rectal intusussception (RI) difficulties when flaring bad (got diagnosed by the radiologist with a mild RI).
* may also have a (pin-prick sized?) rectovaginal fistula as pass gasses that way when flaring and gas spots were found vaginally on CT - though dismissed because radiologist said they were not large enough to suggest a fistula. But after the sigmoidoscpy, all the excess came out through my vagina, not anally!!
* may also have a (pin-prick sized? fistula to my bladder as I pass gasses urethrally when I am flaring badly/have a UTI.
Feel generally unwell - fatague, insomnia, aches and pains.
Other extraintestinal symptoms: tendonitis all over the place, joint pains, migraines, scalp pains with face pains radiating to my gums and eyes, chin pains right chin, leg bone pains mostly right leg, swollen lymph glands neck and around chin, painful ears, dryness issues (might be Sjorgrens - not diagnosed yet), Raynaud's type symptoms (not diagnosed yet) get systemic itching from time to time, many eye floaters, memory problems, borderline hypothyroid for at least 5 years (not on replacement yet), etc.
Some of these symptoms must be connected wit the UCTD/Lupus, some I think might be Celiac Disease possibly or Crohn's Disease or both?
From some of my symptoms, does it sound like I might have Crohn's Disease and/or Celiac Sprue ? - exacerbated by NSAID use. Or could this be a manifestation of connective tissue disease? - or combination? I know auto-immune diseases tend to cluster. A relative looks to have died of a ruptured bowel - and did not live to know if he had bowel disease. He also had a CTD. I don't know what the death certificate says. His mother was my great grandma and looks to have had auto-immune disease too: perncious anaemia, and possibly Hashimo's.
Incidentally, GP still does not accept/believe I have inflammation though I have been diagnosed with a chronic inflammatory connective tissue disease already - lol. Perhaps because I had told them I believe I have chronic inflammation over a year ago - and they dismissed it. So it is guilt/denial? I don't know. :confused2:
Food sensitivity tests suggested high sensitivity to : gluten, cows milk, cows milk cheese, lactose, all meats, foods from the deadly nightshade family, chlorine, and sulphur. I had noticed that sulphur-rich foods make me more gassy and same with meats. I had not realised that about milk. And showing multiple vitamin deficiencies.
What tests should I ask the new GI doctor to run? Or should I just wait and see what he suggests? Because I have been messed about for 2 years with GI symptoms and clueless doctors and discharged not diagnosed :ybatty:, I am concerned it will happen again. Any suggestions please?
Sorry if this is too long to read. Thanks for reading, and thanks for your input...
juljul xx
I am new posting to the forum but have been reading posts for some time.
My story in a nutshell is this:
Had some occasional night time rectal cramps episodes (proctalgia fugax...but didn't know it was called that at the time) for a few years. Also had some bloating issues off and on, floating stools, piles off and on, possible anal fissures which mistook for flaring piles.
However, just over 2 years ago I was prescribed NSAIDs for tendonitis. I then one day woke up in agony with anorectal ("Backside") pain and to cut a long story short had this really bad for almost a year undiagnosed (though saw a colorectal surgeon - was useless) and could not sit for the same length of time, plus had an exacerbation of GI symptoms, and gained some new ones. And "backside" pain had coincided with a dental abscess. Towards the end of this very bad year I had a minor op to remove the abscess and was given co-amoxiclav, and NSAIDs. Not wanting to take the NSAIDs because I believed they triggered the "backside" pain I took bromelain instead. I got some relief after taking these. It took a while for the penny to drop but then I realised I must be suffering from some sort of infection and inflammation in my gut. But the GP would not believe that because the sigmoidoscopy was normal - though no biopsies were taken lol. And I know from my research that biopsies are crucial because you don't always see inflammation, or it might be below the mucosa. This plus the fact that my ESR always comes back "normal". And it seems most GPs can't think outside the box!!
After realising I was suffering from some sort of infection and inflammation of my GI system I started taking oregano oil and natural anti-inflammatories. I thus was able to sit and keep my symptoms to a moderate bearable level for the next year. I had seen a GI doc but they were parroting what the colorectal guy and GP said. And they missed an important test result for a year because of being "blinkered" (ANA test held for a yr almost and GI doc said all tests were normal!!). They also missed the report that said I have a minor rectal intusussception - because tagged along with the colorectal doc who had missed it though I told him I have some functional difficulty!!!
Now two years on, and the GI doc finally finding the ANA because I wrote to them in desperation after getting discharged with all my GI symptoms still in place. I am way too unassertive. I then got a rapid referral to a rheumatologist and just (few days ago) got diagnosed with auto-immune connective tissue disease (Undifferentiated - though looking like Lupus at least because of antidsDNA, and sky high ANA - not sure why I didn't get the Lupus diagnosis yet?!). But they are finally taking me seriously. I think I have had the Lupus for at least 14 years - lots of symptoms way back.
Got a referral coming up to a new GI doc. My issues now have got much worse in the two years because I must have needed immunosuppression of some sort and/or because I might have celiac disease.
My main GI issues are now (most of which were there in that dreadful first year):
* backside pain which is being managed with a ton of natural anti-inflammatories but still flares sometimes, particularly when stressed, and when menstruating.
* stools: some floating, some hard (especially in yr 1 after NSAIDs), mostly pale, mostly can see gas bubbles coming out of them in the toilet bowl.
*Got parasitised in yr 1: pinworms for 5 months, cat (flea) tapeworm - self-treated for both because of embarrassing nature. Suggestive of ill terminal ileum maybe??
* tendency to hard stools, but sometimes diarrhea
*smelly stools most of the time
*mucus with stools when hard, occasional blood when flaring bad
* stool miscroscopy on a holiday last year (looking for answers) suggested malabsorption
* gastritis?/silent reflux?? with maybe mild pancreatitis ? - off and on (GP never diagnoses so I have to diagnose myself) - symptoms:swallowing difficulty (food, and sometimes water , severe pain around sternum, some upper GI pain, nausea, lack of appetite. Get no taste of acid, very little burping, but hear a whizzing sound in my neck & upper esophagus quite a lot - at night too. This really came on in the last year. DGL licorice has helped somewhat. *edit*Forgot to say an upper endoscopy with biopsies was normal but I was not flaring bad with swallowing difficulties and pain at the time of the test.
* fairly fast food turn around (transit) but yet have a tendency to hard stools??? strange? timed this to be around 11 hours.
* some rectal intusussception (RI) difficulties when flaring bad (got diagnosed by the radiologist with a mild RI).
* may also have a (pin-prick sized?) rectovaginal fistula as pass gasses that way when flaring and gas spots were found vaginally on CT - though dismissed because radiologist said they were not large enough to suggest a fistula. But after the sigmoidoscpy, all the excess came out through my vagina, not anally!!
* may also have a (pin-prick sized? fistula to my bladder as I pass gasses urethrally when I am flaring badly/have a UTI.
Feel generally unwell - fatague, insomnia, aches and pains.
Other extraintestinal symptoms: tendonitis all over the place, joint pains, migraines, scalp pains with face pains radiating to my gums and eyes, chin pains right chin, leg bone pains mostly right leg, swollen lymph glands neck and around chin, painful ears, dryness issues (might be Sjorgrens - not diagnosed yet), Raynaud's type symptoms (not diagnosed yet) get systemic itching from time to time, many eye floaters, memory problems, borderline hypothyroid for at least 5 years (not on replacement yet), etc.
Some of these symptoms must be connected wit the UCTD/Lupus, some I think might be Celiac Disease possibly or Crohn's Disease or both?
From some of my symptoms, does it sound like I might have Crohn's Disease and/or Celiac Sprue ? - exacerbated by NSAID use. Or could this be a manifestation of connective tissue disease? - or combination? I know auto-immune diseases tend to cluster. A relative looks to have died of a ruptured bowel - and did not live to know if he had bowel disease. He also had a CTD. I don't know what the death certificate says. His mother was my great grandma and looks to have had auto-immune disease too: perncious anaemia, and possibly Hashimo's.
Incidentally, GP still does not accept/believe I have inflammation though I have been diagnosed with a chronic inflammatory connective tissue disease already - lol. Perhaps because I had told them I believe I have chronic inflammation over a year ago - and they dismissed it. So it is guilt/denial? I don't know. :confused2:
Food sensitivity tests suggested high sensitivity to : gluten, cows milk, cows milk cheese, lactose, all meats, foods from the deadly nightshade family, chlorine, and sulphur. I had noticed that sulphur-rich foods make me more gassy and same with meats. I had not realised that about milk. And showing multiple vitamin deficiencies.
What tests should I ask the new GI doctor to run? Or should I just wait and see what he suggests? Because I have been messed about for 2 years with GI symptoms and clueless doctors and discharged not diagnosed :ybatty:, I am concerned it will happen again. Any suggestions please?
Sorry if this is too long to read. Thanks for reading, and thanks for your input...
juljul xx
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