So....after 4 years of going through hell with none of the 'ibs' treatments working. I finally have an actual diagnosis.
4 years ago, I suddenly lost a lot of weight, along with really bad bloating, nausea after meals, along with diarrhoea, and what i thought was constipation. After a trip to the A&E (ER) my appendix was taken out for no reason, and i was referred me to a gastro where after a colonoscopy I was then diagnosed with IBS. I tried all of the treatment options, and none seemed to be working. Symptoms would come and go on their own over a period of months. I returned to a gastro where he then referred me to do a breath test where it was confirmed i had SIBO, and couldn't digest Lactulose. Took the anitbiotics for that, however after a couple of weeks all of my symptoms came back.
Fast forward i gave up, and tried managing the symptoms on my own until i started flaring up again, and my pain got worse. Yet again another trip to A&E, and for some reason I was given a shot of prendisone, and sent home once they found my bloods were normal. I had no symptoms until January where things started coming on gradually. First my joints aching, then fatigue, then a constant low grade fever, and then pain in my lower right side. Went to A&E once again, however this time after finding my bloods normal, I was sent home....again.
Came back the next day, and this time i was admitted after they found i had 'Faecal loading' in an x ray. I was then admitted, and the doctor said i'd do an enema, and go home....however the enema did nothing at all. Came back again the next day, and this time i was admitted for a while. This doctor told me i had a partial obstruction, and that i'd have to drink horrible, horrible things to have a complete bowel cleanse. While i was there I was referred to a gastro who after a minute of seeing my x ray told me 'your small bowel is seriously dilated I suspect you may have inflammation/ a stricture there that we originally missed because it was unreachable via colonoscopy.'
They eventually did an endoscopy which showed i had gastritis and duodenitis (I already knew it wasn't H.Pylori related but i digress.) After a week of waiting i got the biopsy results back and it showed I had a few ulcers, which were all negative for H.Plyori or NSAID use. That's where Crohn's started coming into play. On the histology report it showed that i had chronic inflammation within my stomach and duodenum. MY GI said 'Yes we believe it's Crohn's however we need to wait for all the clinical, and histological reports before we can make the full diagnosis and start you on the right treatment.' He then mentioned 'Gastroduodenal Crohn's is very rare so we have to check your small bowel as well to see if there isn't anymore inflammation there.' I've done the MRI now, and i'm just awaiting the results.
Here's where i need advice though: I'm in agony at the moment but my GI, A&E, and my GP have all said their hands are tied until they get the MRI results back. Has anyone had this experience before where they've been told it's crohn's but until all of the results come back they can't start treatment?
Also the bizarre thing with me was my Inflammation marks always came back normal, along with even my calprotectin levels coming back normal (although i've only done this test twice.) Anyone else experienced this? I suspect my main issue is strictures, and that there's no activity at the moment because it did mention on the report that inflammation could be seen on deeper examination of the biopsy's along with the fact that i suspect the 'faecal loading' was actually a partial obstruction.
I feel like i friggin weirdo for saying this but you should of seen the look of relief on my face when the gastro came to my bed and told me 'we believe this is Crohn's'
I'm sorry about the length of this post, but as you can imagine it's been a long journey.
4 years ago, I suddenly lost a lot of weight, along with really bad bloating, nausea after meals, along with diarrhoea, and what i thought was constipation. After a trip to the A&E (ER) my appendix was taken out for no reason, and i was referred me to a gastro where after a colonoscopy I was then diagnosed with IBS. I tried all of the treatment options, and none seemed to be working. Symptoms would come and go on their own over a period of months. I returned to a gastro where he then referred me to do a breath test where it was confirmed i had SIBO, and couldn't digest Lactulose. Took the anitbiotics for that, however after a couple of weeks all of my symptoms came back.
Fast forward i gave up, and tried managing the symptoms on my own until i started flaring up again, and my pain got worse. Yet again another trip to A&E, and for some reason I was given a shot of prendisone, and sent home once they found my bloods were normal. I had no symptoms until January where things started coming on gradually. First my joints aching, then fatigue, then a constant low grade fever, and then pain in my lower right side. Went to A&E once again, however this time after finding my bloods normal, I was sent home....again.
Came back the next day, and this time i was admitted after they found i had 'Faecal loading' in an x ray. I was then admitted, and the doctor said i'd do an enema, and go home....however the enema did nothing at all. Came back again the next day, and this time i was admitted for a while. This doctor told me i had a partial obstruction, and that i'd have to drink horrible, horrible things to have a complete bowel cleanse. While i was there I was referred to a gastro who after a minute of seeing my x ray told me 'your small bowel is seriously dilated I suspect you may have inflammation/ a stricture there that we originally missed because it was unreachable via colonoscopy.'
They eventually did an endoscopy which showed i had gastritis and duodenitis (I already knew it wasn't H.Pylori related but i digress.) After a week of waiting i got the biopsy results back and it showed I had a few ulcers, which were all negative for H.Plyori or NSAID use. That's where Crohn's started coming into play. On the histology report it showed that i had chronic inflammation within my stomach and duodenum. MY GI said 'Yes we believe it's Crohn's however we need to wait for all the clinical, and histological reports before we can make the full diagnosis and start you on the right treatment.' He then mentioned 'Gastroduodenal Crohn's is very rare so we have to check your small bowel as well to see if there isn't anymore inflammation there.' I've done the MRI now, and i'm just awaiting the results.
Here's where i need advice though: I'm in agony at the moment but my GI, A&E, and my GP have all said their hands are tied until they get the MRI results back. Has anyone had this experience before where they've been told it's crohn's but until all of the results come back they can't start treatment?
Also the bizarre thing with me was my Inflammation marks always came back normal, along with even my calprotectin levels coming back normal (although i've only done this test twice.) Anyone else experienced this? I suspect my main issue is strictures, and that there's no activity at the moment because it did mention on the report that inflammation could be seen on deeper examination of the biopsy's along with the fact that i suspect the 'faecal loading' was actually a partial obstruction.
I feel like i friggin weirdo for saying this but you should of seen the look of relief on my face when the gastro came to my bed and told me 'we believe this is Crohn's'
I'm sorry about the length of this post, but as you can imagine it's been a long journey.
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