Hi all, I’m looking for people who may have had something similar or suggestions for what my next steps should be.
I've been to 2 gastroenterologists who seem to just give up after the first set of tests come bakc normal.
I get recurrent episodes of severe abdominal pain that seem to happen in a cyclic/intermittent pattern. They can happen every 30–90 days, but I’ve also gone as long as 6 months without an episode. I’m generally okay between episodes.
Day to day I seem to have bloating non stop - usually in the morning im fine but during the day i get bloated very easily.
Main episode pattern:
- Pain usually starts near the right side of my belly button / periumbilical area - very small diameter area
- It gradually gets worse over hours
- It can spread to the right upper abdomen just below the floating rib
- It can also spread across the lower abdomen and down toward the bladder/pelvic area inch or 2 above the pubic bone
- Average episode lasts around 8 hours
- Pain can come in waves/cramps, sometimes stabbing/pressure-like
- I often get nausea/urge to vomit, but vomiting is not always the main symptom
- Hot or cold water over my abdomen can reduce the pain/urge to vomit
- Lying down can sometimes make it more unbearable; walking/standing/running helps deal with the pain - can dull or distract?
- Sometimes I get a very slight dull feeling in the right side of my belly button area and then it takes hours for the intense pain to start. So this is usually an indicator im going to have issues that day.
- After the episode, I seem to pass more gas than usual.
- The gas often smells like rotten eggs/sulphur
- Passing gas can give some relief
- I can have residual lower abdominal tenderness/pain the next day
- During the episode I can feel lightheaded or dizzy as the hours go by.
- By the end of the episode im usually exhausted for a day or 2 after.
Bladder/urinary symptoms:
- During/after some episodes, I get bladder/lower abdominal pressure or pain
- It can feel like my lower abdomen is full or distended after an episode which can make passing urine much more difficult.
Bowel/gas symptoms:
- Bloating/gas seems involved
- Sometimes it feels like gas is trapped during the episode
- Rotten-egg smell makes me wonder about sulphur fermentation/SIBO/food intolerance, but the attacks are very intermittent rather than daily
Relevant history:
- I developed adult-onset atopic dermatitis (don't get very severe flares other than eyelids swelling when they come in contact with certain sunblocks). around a similar period to these abdominal issues, which makes me wonder about immune/allergic/gut barrier involvement
- I’ve had these episodes for years
- I don’t use cannabis
- Morphine during an attack previously had little/no effect afaik
- Hot/cold water on the abdomen helps with the pain - perhaps it distracts my brain? If i am feeling the urge to vomit i usually just run hot or cold water over my abdomen until it stops. Interestingly enough usually by the time i feel the urge to vomit the episode is nearly over. Even if i dont vomit the pain will usually cease within an hour or 2.
- No known consistent trigger yet
Tests/results so far:
- HIDA scan: gallbladder ejection fraction was 31% at 15 minutes and 91% at 40 minutes
- Gastroenterologist said the HIDA result was normal
- I had no pain during the HIDA scan
- eGFR around 83
- Urine has been checked during an episode before and reportedly showed no crystals
- UTI seems unlikely because this has been happening for years
- I’ve had gastroenterology review, but no clear diagnosis so far
- Colonoscopy,gastroscopy was done and normal besides a small hital hernia and mild/moderate gastritis present 1 weeks after episode.
- blood tests are all more or less normal
- hpylori tested
- stool tests - elastase and calproctectin - normal
I had an episode about 2 days ago and I still have pain when i press my lower abdomen - all the way across. I also somehow have retained about 3kg of weight since the episode started - bowels have been moving fine.
Does anyone have any suggestions?
Feel free to ask questions.