"Just" IBS, or something else?

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I'm a 27 year old, 165 pound male with a history of lower back pain from an injury, but otherwise generally healthy and active. About 18 months ago, I started having burning and sharp pains near my belly button. Shortly after this pain started, I noticed a sharp LRQ pain (directly between by hip and belly button). That evening, I went to the ER, where I had an abdominal CT scan and some blood work to rule out appendicitis. The labs and CT came back normal, so I was offered pain medication (which I refused) and was sent home.

Over the next month, LRQ pain continued but the belly button pain went away. I discussed the pain with my GP, who suggested another abdominal CT scan. This CT also came back clear, so he referred me to a General Surgeon.

During my exam with the surgeon, he found a small inguinal hernia on my right side. While pushing on the area he found, he was able to simulate the LRQ pain. Because of this, we were hopeful that it may have been the cause. About 6 months after the original pain began, I underwent laparoscopic surgery to repair the hernia with mesh. During my initial recovery, I was taking Ibuprofen regularly and felt great the first couple of weeks. I stopped taking any medications by the second week and started feeling the original LRQ pain again shortly after.

After a few months of recovery with no relief from the pain, I started making follow up appointments to have some additional testing done. The surgeon felt that the pain was likely just recovery pain, but I was never convinced.

Now, over 18 months later, my pain has increased in frequency and intensity. I'm experiencing frequent fatigue and I'm starting to have trouble doing some of the things I'm used to doing at work and home. The pain has also spread from the original location, all the way to the bottom of my right rib cage. The pain also tends to affect my lower back and side. During this period, I have experienced some digestive issues (alternating diarrheaa and constipation, gas/bloating), as well as occasional sharp groin pains and slight difficulty urinating. I have not been able to specifically relate the pain or digestive issues to certain foods, though eating large meals or fatty/greasy foods tend to make me feel worse in general.

Over the last 18 months, I've been to my GP, two different General Surgeons, a Gastroenterologist, a Spine Specialist, and a physical therapist. I've had the two abdominal CT scans, an abdominal ultrasound, a fecal occult blood test, a colonoscopy, a SIBO breath test, a full spine X-Ray, a lower-lumbar MRI, and now recently a HIDA scan. I have been told all my tests have been "normal", with the exception of some issues with my lumbar spine, which was not a surprise.

I have asked about many possible causes, such as chronic appendicitis, ulcers, gallbladder issues, mesh rejection/infection, etc and have gotten nowhere. My GI doctor has suggested that my pain could be "just" IBS and prescribed Bentyl about 8 months ago to try. I took it for about a month and felt zero change so we decided to stop it. The spine specialist prescribed muscle relaxers in case some of the pain was back related and again I felt zero change so I stopped after about 10 days.

My recent HIDA scan shows my gallbladder ejection fraction is 82%. I've read about Hyperkinetic Biliary Dyskinesia and plan on asking about that as a possibility. As far as this possibly being "just" IBS, does that generally cause consistent, reoccurring pain in specific areas (that can be elevated by pushing on the areas) and only other a few, mild "typical" symptoms of IBS?

One of the general surgeons, my GP, and spine specialist have recommended another abdominal CT (as it's been over 17 months since my last) as my next step. My current GI doctor has recommended waiting on the CT and has referred me to a second GI doctor for another opinion.

I'm not opposed to another CT as I think it would help put my mind at ease, but I am concerned about the radiation of all of these tests. I'm wondering if there are any other tests (additional ultrasounds, MRIs, or even blood work) that I should be suggesting. None of the doctors had any other suggestions when I asked them. Is three CT scans in 18 months unreasonable, considering the other testing I've had?

Any thoughts, experiences, or suggestions would be greatly appreciated! I'm really unsure of what to do next and I am starting to have hard time keeping a positive attitude. Feeling better would be great, but definitely want to rule out anything serious and keep this from getting any worse!

Thank you for your time and help!

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6 Replies

  • Posted

    Hi there, sorry to hear about all that you’ve been through. Just wondered if you have looked into ileo caecal valve dysfunction? This valve can be located exactly where you describe; diagonally between belly button and hip on your right side. If you press down it feels like a golf ball under the flesh. A disfunctioning valve can cause many problems, sometimes massage can help or osteopathy/chiropractic/Bowen. Anyway, have a look online and see what you think. Just a thought, but I’m in no way an expert! Feel better.
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  • Posted

    Hi AbdominalPains

    I have no advice to offer regarding your pain..but would like to put your mind at rest regarding US, MRI and CT scans. There is as much radiation emitting from scanners at airports and on long hall flights as the scans mentioned..so there is not much radiation from US, CT, and MRI scans to worry about....There are many on the forum who can give good advice about your problem...my very best wishes to you for a firm diagnosis...

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  • Posted

    Wow, i'm amazed at all the tests, etc, you've had and yet you still have the problems, etc. I'm sorry I cannot offer you any help but i'll certainly be following your ongoing health issues and hope you can get to the bottom of it. Keep in touch.

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  • Posted

    Abdominal surgery can lead to IBS.   I think you have found your food triggers if fatty or greasy and large meals make you worse; avoid these foods.  IBS can come and go and pain typically moves about along with bowel habit change. Your multiple negative tests suggest this. Ask your doctor for s different antispasmodic, you may have to try several.
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  • Posted

    Thanks for the responses everyone.  Ruth, I will definitely do some more research on ileo caecal valve dysfunction.  Pippa, I will by paying extra attention to my meals in case there's more of a connection than I realize.  If this is IBS and nothing else, I sure hope I can pin point the triggers and manage it, because it's not fun at all!

    The last few days have been pretty rough.  Constant LRQ pain as well as some of the worst sharp, burning URQ pain (as well as back pain below my right shoulder blade) that I've had so far.  Today, the pain was to the point I decided to go the the ER.

    They did blood work, urinalysis, and I went ahead and got the abdominal/pelvic CT scan with contrast.  All of which came back normal (except for low potassium on my blood work, for which they gave me a supplement).  The doctor said he would have been more concerned about my gallbladder based on the symptoms but felt the recent HIDA scan was good enough.

    He set me up with a different GI doctor and recommended I have an endoscopy.  He also prescribed Protonix and suggested I try that for a week or two.  I'm going to discuss the suggestions with my GI doctor as soon as I can get an appointment.

    I left the ER pretty disappointed that they didn't really get anywhere, but I suppose I'm relieved that the CT didn't find anything serious!  Guess I'll have to keep searching for relief.

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    • Posted

      I also got nowhere with three and a half months of tests and at one point, a doctor recommened doing all of the tests again to see if anything was missed.  The last doctor I saw recommended not doing any repeat tests or any new ones and gave me a confident diagnosis of IBS.
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