I would love it if you could share any experience of this. Im scared that this might be what is going on with me.
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I sort of have. But I have so many various problems now they're not sure if Chrones is a factor or not. My new official post-J-pouch diagnosis is "Indeterminate Colitis". I.e. the doctors are completely clueless, in my case. What atypical symptoms are you having?
It started with Fatigue, then the heaches began. I am a chronic headache and migraine suffer so I thought this was the cause of my fatigue. Then I got pouchitis and I got this under control by cutting carbs, sugar and using olive leaf extract and wild oragano oil followed by probiotics. I have now had the heaaches and migraines every day for about 4 weeks with no break. I have neaurological symptoms such as virtigo, some occasional blurred vision and slow word finding skills. Every muscle in my neck and back is in pain. Of course none of this is unusual when you have headaches and migraines but the duration is unusual and they are not really responding to pain relief. I was tested to make sure I didn't have blood clotting after my 2nd astra zenica vaccination(for covid). Thankfully I don't have blood clots. Then I started getting some gut pain and bleeding. I feel that my gut is the root issue and that the headaches and muscle aches are secondary to this.
I just have that sinking feeling, here we go again!
I don't know if this will help but I was diagnosed with Crohns before I got my j pouch. I told my doctor that I read one can't get a j pouch with Crohns and he said that wasn't true. It has been 4 1/2 years since takedown and I have never had an issue.
Feel better soon.
I was diagnosed with Crohn's but do not have ANY of the symptoms you are complaining about and although some of them could be autoimmune disorder related, if I were you I would be a lot more concerned about the possibility of a cerebral aneurysm or brain tumor because the symptoms you describe are consistent with those things. You need an MRI or CT of the brain - talk to your PCP about it. Don't let this delay any further!!!!! There could also be more benign causes such as venuous abnormalities that are congenital and I have seen those manifest in brain MRIs with these symptoms as well.
Thanks CT barrister. I will definitely pursue having a CT scan.
However these symptoms are not unusual for me. When I had ulcerative colitis, any time that I would have a flare up these would be the same symptoms. And then I would have all of the other things like the bleeding, ulceration and fevers as well. So this has a sort of feeling of familiarity which makes me wonder if I might be developing Crohn's. When you say the symptoms could be autoimmune-related, that's exactly what I suspect . This seems to be one of the ways that my body reacts when I have some internal inflammation. I did have some bleeding over the last few days but it seems to have settled now and I am actually feeling a lot better today.
I do have a neurologist who monitors all of my migraines and I'll give him a call tomorrow to discuss the symptoms. Thanks for your concern and suggestions
best wishes Anna
@Kangaroo posted:I don't know if this will help but I was diagnosed with Crohns before I got my j pouch. I told my doctor that I read one can't get a j pouch with Crohns and he said that wasn't true. It has been 4 1/2 years since takedown and I have never had an issue.
Feel better soon.
That is wonderful news and may that long continue.
I was diagnosed with UC in 1992. After 8 tough years, I had a Total Colectomy in 2000. Around 2016 or so, I was diagnosed with Crohn's. I am not certain of this diagnosis but I believe one GI was able to find inflammation in my small intestine. I may also have inflammation in my rectal cuff and chronic Pouchitis. So, not really certain of my situation.