Crohn's Disease Forum » Support Forum » Undiagnosed Club » Feeling Lost After a Year of Tests - Insight Appreciated


12-21-2018, 04:37 AM   #1
hexenluna
 
Join Date: Dec 2018
Location: South Africa
Feeling Lost After a Year of Tests - Insight Appreciated

Hey everyone - this is my first post here...

I've always had mild IBS symptoms, but late 2017 I started to experience pain in my right side next to my ribs, it was very isolated. No change in bowel habits. This continued for 6 months, but I also started to suffer from swings between constipation and diarrhea.

I had an gastroscopy done in May 2018 and was diagnosed with chronic gastritis, H-Pylori negative.

The bowel symptoms continued to get worse, and I then started to pass occasional bloody mucus. There was almost always heavy mucus present in stool, regardless of hard or soft.

My doctor then sent me for a CT scan, which came back clear on everything. No signs of any problems... I was told it's likely just IBS.

My symptoms continued and I went for a colonoscopy a month ago. Samples were biopsied (routine, no signs of any polyps). And I was told that the colonoscopy looked healthy and that there were no signs of bleeding or inflammation.

A month later, I am in massive financial debt from all these tests, and I am waking up 3 to 4 times a night with pain generalized to my stomach and continue to pass red blood in mucus from time-to-time.

I have no idea where to go from here, as my doctor feels like they've looked at everything and everything appears fine... However, the presence of blood and constant pain, and sleep troubles make it difficult to just accept.

I'd love to hear from anyone who has gone through similar and what the outcomes were, if you can perhaps recommend what to do next, as my doctor seems content in accepting that it's just a functioning bowel issue.

Much appreciated.
12-21-2018, 05:24 AM   #2
my little penguin
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Was the ct scan with entography?
Did they do a capsule endoscopy (pill cam)?
Those are the only two types of tests left
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12-21-2018, 11:23 AM   #3
Scipio
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The lack of signs of inflammation combined with swings between constipation and diarrhea suggest IBS-alternating, one of the three types of IBS.

Is the abdominal pain relieved or reduced by defecation? If so, that would also suggest IBS. The blood, however, suggests something more.

Has the doctor given you a formal diagnosis? Recommended any treatments? Even if it is IBS rather than IBD there are still many treatments for IBS, depending on the cause.
12-22-2018, 12:54 AM   #4
hexenluna
 
Join Date: Dec 2018
Location: South Africa
Was the ct scan with entography?
Did they do a capsule endoscopy (pill cam)?
Those are the only two types of tests left
I don't believe it was. And no capsule endoscopy, these seem to be rarely done here. Maybe cause of cost.
12-22-2018, 01:04 AM   #5
hexenluna
 
Join Date: Dec 2018
Location: South Africa
The lack of signs of inflammation combined with swings between constipation and diarrhea suggest IBS-alternating, one of the three types of IBS.

Is the abdominal pain relieved or reduced by defecation? If so, that would also suggest IBS. The blood, however, suggests something more.

Has the doctor given you a formal diagnosis? Recommended any treatments? Even if it is IBS rather than IBD there are still many treatments for IBS, depending on the cause.
There's no relief at all and can't find any connection of pain to bowel movement. Pain seems to only get progressively worse with time. Pain initially was mild and bearable but now most nights are a nightmare. Pain seems to get worse when lying down and radiates to back. There hasn't been a day without pain in a while now.

I was diagnosed with IBS before and had flares that would last a few weeks but now it's like being stuck in a flare permanently but with additional pain too. I haven't been prescribed anything for it except an anti-anxiety medication from my GP who believes it may be anxiety induced as I do have GAD.

Two doctors have felt that they can call IBS, but my gut (no pun intended) is saying that it doesn't feel like the IBS I'm used to at all.

Thanks for the comments
01-02-2019, 08:45 PM   #6
Mountaineer01
 
Join Date: Oct 2018
Location: Baltimore, Maryland

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It sounds like you need to have an MRI enterography. That is how mine was finally diagnosed. Doctors put too much faith in colonoscopies, which only look at the inside surface. Turns out, mine is inside the walls of the small intestine, ileum, and cecum. A colonoscopy only shows some superficial inflammation in the lining, but the MRI showed I had some serious issues in the areas I mentioned above. Even the capsule endoscopy didn't show much with me.
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