belly pain for 3 years, no diagnosis
Darklighter04
Online Community Member Posts: 3 Listener
Hello Everyone!
I'm new here
Wanted to share my story, hoping maybe someone would have an advise or something... I've been in pain and undiagnosed for 3 years now and not sure what to do anymore, so I'd appreciate any feedback.
My story started when I was 16-17, once a year I'd get episodes of a very painful attacks on the right side under my belly button, I couldn't move and it was painful to breath. I always thought it was appendicitis, but by the time we would get to the ER the pain would resolve on itself and ultrasounds wouldn't show a thing. Fastworward to 2020, I was 30 and although I still got those attacks here and there, I kind of gave up on searching for an answer because doctors would not take me seriously. In 2020 I woke up in the middle of the night from the same type of an attack but multiplied to 100. It was excruciating, I couldn't get dressed and was glued to the wall, inhaling and exhailing was a tourture. The ambulance workers got me to the ER, where the ultrasound didn't show anything and gynocologiest said I was fine, got several injections of painkillers and was released home. Unlike my other attacks this one never stopped, I was in a constant pain, any movement felt like something was about to tear inside of me, and sharp pain attacks would come and go 5-10 times/week now.
Now it;s been 3 years, I am still in pain daily, walking, sitting sucks. I had all possible tests done, gastroscopy, 2 colonoscopies, 4 ct scans, 1 mri, - nothing, nada. I had a diagnostic laparoscopy where they cut off my appendix just in case it was a case of a chronic appendicites, - for 3 weeks I was okay-ish, then the pain got back. I dont experience nausea, diarrhea or anything, - just pain..The only thing they found is that I have elongated colon, my trasverse colon hangs down like xmas lights under my belly button and my cecum is lying down in my pelvis, lower then it supposed to. 1 surgeon suggested I might have mobile cecum, - but all scans look pretty much the same, so I guess the cecum doesn't really move around much..
I am now pushing surgeons to do a right hemicolectomy to just remove the whole ascending and transverse colon, hoping it would be the answer and i will go back to my normal life.. But since nobody know for sure, I don't know if I should do a major surgery like this, I mean- what if it isn't the issue and on top of this pain I will have complications? I dont know what to do anymore...
So yeah.. Thank you for reading my "essay", like I said, I would appreciate any response, feedback or advise..
Thank you<3
I'm new here
Wanted to share my story, hoping maybe someone would have an advise or something... I've been in pain and undiagnosed for 3 years now and not sure what to do anymore, so I'd appreciate any feedback. My story started when I was 16-17, once a year I'd get episodes of a very painful attacks on the right side under my belly button, I couldn't move and it was painful to breath. I always thought it was appendicitis, but by the time we would get to the ER the pain would resolve on itself and ultrasounds wouldn't show a thing. Fastworward to 2020, I was 30 and although I still got those attacks here and there, I kind of gave up on searching for an answer because doctors would not take me seriously. In 2020 I woke up in the middle of the night from the same type of an attack but multiplied to 100. It was excruciating, I couldn't get dressed and was glued to the wall, inhaling and exhailing was a tourture. The ambulance workers got me to the ER, where the ultrasound didn't show anything and gynocologiest said I was fine, got several injections of painkillers and was released home. Unlike my other attacks this one never stopped, I was in a constant pain, any movement felt like something was about to tear inside of me, and sharp pain attacks would come and go 5-10 times/week now.
Now it;s been 3 years, I am still in pain daily, walking, sitting sucks. I had all possible tests done, gastroscopy, 2 colonoscopies, 4 ct scans, 1 mri, - nothing, nada. I had a diagnostic laparoscopy where they cut off my appendix just in case it was a case of a chronic appendicites, - for 3 weeks I was okay-ish, then the pain got back. I dont experience nausea, diarrhea or anything, - just pain..The only thing they found is that I have elongated colon, my trasverse colon hangs down like xmas lights under my belly button and my cecum is lying down in my pelvis, lower then it supposed to. 1 surgeon suggested I might have mobile cecum, - but all scans look pretty much the same, so I guess the cecum doesn't really move around much..
I am now pushing surgeons to do a right hemicolectomy to just remove the whole ascending and transverse colon, hoping it would be the answer and i will go back to my normal life.. But since nobody know for sure, I don't know if I should do a major surgery like this, I mean- what if it isn't the issue and on top of this pain I will have complications? I dont know what to do anymore...
So yeah.. Thank you for reading my "essay", like I said, I would appreciate any response, feedback or advise..
Thank you<3
0
Comments
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Hello @Darklighter04
Welcome to the community!
It sounds like you've gone through the wringer! I am so sorry that they haven't been able to diagnose why you are in so much pain. We unfortunately don't give medical advice here but I hope by sharing my experience it may help you
I have IBD and went from pillar to post trying to find the best treatment option, before I ended up having a permanent ileostomy. For me it was the best option, but I know many in the ostomate community that still have issues and are still in pain after resections or stoma formations. I would suggest asking to be referred to a stoma nurse, just because with any surgery on the bowel, having a stoma either permanently or for a short time could be a possibility. They'll be able to give you all the information in helping you way up options.
I'd also have a look on the GUTS UK website as they have a lot of information of digestive issues. Can I ask, with all your tests, did they check your bile duct too?0 -
@Hannah_Scope ,
Thank you for your kind welcome and response!
I am going to a gastroenerologiest on Thrusday, will ask her for a referral to the stoma nurse, thank you for the suggestion
I haven't been checked for the bile duct issues, - wouldn't they see any potential problems in the CT and MRI scans or during the diagnostic laparoscopy? Although I am not very sure that they did a proper "diagnostic laparoscopy" to be honest, probably just checked for the tears in my guts and cut off the appendix, but it's only my assumption of course...Is cholangiography the only way to check the bile duct properly?
I am so sorry to hear you have IBD, I hope the ileostoma is helping you to live a normal life Can I also ask what were your symptoms before you got diagnosed with IBD?
0 -
@Darklighter04 My symptoms were stomach pains, incontinence and blood in the stool. I was misdiagnosed as IBS for a while as they share similar symptoms.
I had two scans for my bile duct a week apart. You can ask the gastroenterologist about checking it, mine did before my surgery to rule out any issues there.
I hope the appointment goes well on Thursday! 0 -
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