Ok, here it goes - I need help on figuring out what has been wrong with my abdominal issues.
forewarning: a lot of this might sound pretty stupid for an intelligent woman but getting help for my health has been compromised by my current insurance and financial struggles.
Some background first: I quit my crappy job, last day of November, and went on state Medicaid temporarily until i got a new job with benefits again. i was doing fine, health-wise, but my job had been VERY stressful for me. I'm putting in all the info possible bc since going to Urgent Care and getting tests done, the problem remains unknown. since going on state insurance AKA Medicaid after quitting my job, I have not been able to follow up with ANY doctors in the last 5-6 weeks. All the docs either won't accept new Medicaid patients or don't have new patient appts for 3 MONTHS. i can't pay out of pocket for anyone including my old PCP and old colon/rectal surgeon. I couldn't see him again anyway after moving/changing insurance.Though I haven't seen any colon/rectal or GI doctors since October, 2013 (4 months after takedown), i've been doing great with my jpouch for 1.5 years.
The problem: 2-3 weeks after quitting job, Mid-December: for around 2 weeks duration, i would get a sudden, stabbing abdominal pain in the evening that lasted around 10 seconds - in the left side of my abdomen. it happened typically once a day, most days in the 2 week period. Pain vanished after 2 weeks.
2 weeks later: left-side abdominal pain began with bad nausea, consistent & constant. pain still on left, at 1.5 to 2 inches north of belly button. Lasted maybe a week, but got gradually worse. other symptoms: more frequent bowel movements, NO bleeding ever, a few times there was a tiny bit of mucus.
Late one night, EXTREME pain in same spot happened with horrible nausea, lasted that painful for hours. i was trying to lie down to sleep. i vomited what little food there was in me, got sudden chills, dizziness, and sudden sweating, lasting only a few minutes. My prn Tylenol 3 and Bentyl didn’t help.
i finally figured out that sitting upright to sleep was ridding me of the pain. pain had gone to my back as well. i finally fell asleep that way and the next day, the pain was gone. Got Pepcid-AC, it started alleviating the pain/nausea.
Went to Urgent Care even though ab pain had started subsiding.
- doc ordered the following: ct scan, ultrasound, bloodwork, urine screen, x-ray
- during ultrasound, it was tender on my stomach, on my back, side, and in ovary area
- urine screen
- doc said functions were generally ok except for low potassium, no pancreatis, anemia (which I had a history of already)
- high white blood cell count - so she tested for UTI - no UTI or infections found
- CT scan
- a couple of dark spots on kidneys, AKA "dilation of the pyramids"
- slight dilation in my "bowels"
- CT scan could see stomach but not jpouch - stomach looked okay
- later got MRI done
- no kidney stones, no obtstruction
- small follicular cyst on ovary - doc said that could be a cause of the pain
- MRI could not show j-pouch and potential inflammation or ulcers
- so doc said i needed a GI specialist for colonoscopy to scope j-pouch
- also told me I needed GYN for pelvic exam
We couldn't find the source of the problem - doc theorized problem being an ulcer since the Pepcid-AC was alleviating the symptoms.
Treatment, despite not getting to source of problem:
- doc initially prescribed an antibiotic before the MRI in case there was a kidney-related issue - pharmacy had trouble with having it in stock. had my MRI done before getting antibiotic and since MRI showed no kidney stones and I was told there was no infections, I didn't bother picking up the antibiotic.
- doc prescribed Rantidine 300mg (Zantac) and Protonix
- I went off the Pepcid to take the Rantidine & PPI
- stomach pain started coming back after I went off the Pepcid, not helped by the other meds. thus, after 2 days I stopped the Protonix, went back on Pepcid & stayed on the Rantidine. i was unfamiliar with this issue and these meds & thought the doc said the Rantidine was the PPI I needed.
- 3-4 weeks later, I discovered the Rantidine was like Pepcid and not the PPI. And that the Protonix works when you take it before a meal. (doc didn't tell me how to take any of these meds.) So I started the PPI/Protonix, along with the Rantidine & Pepcid.
Of note: 6 hours after Urgent Care visit, I had stomach pain again for hours again – seemed to start after i ate. it was there both before and after emptying pouch.
Stomach pain/nausea started improving with the Pepcid and Rantidine. after maybe a few days, my stomach pain and nausea went away entirely. i've been fine ever since then, now around 5 weeks after the Urgent Care visit.
but since i haven't been able to follow up with docs, i wanted to consult you all and see if i seemed ok since i haven't had any more symptoms. i'm still nervous that the other shoe could drop at any moment as a result of not seeing specialists. i do plan on seeing doctors, i just don't know when that will happen. So:
- what does this all sound like to you - ulcer or something else?
- my theory is that this is an ulcer caused by NSAIDs. i had been taking NSAIDs (Aleve) every night for the past few months to relax my muscles to sleep. i *did* ask my old doc if taking 2 Aleve nightly was ok for muscle relaxation to sleep with my medical history - she said it was FINE as long as i didn't take more than prescribed. a pharmacist told me i needed to stop NSAIDs so i switched to Tylenol a week ago.
- Forum posts seem to imply that jpouchers having ulcer = Pouchitis? and that Pouchitis required the antibiotic treatment. is this true, and do my symptoms sound like Pouchitis, even w/ no bleeding?
- do you think I'm okay just continuing to take my Pepcid AC and PPI? My rantidine ran out 2 days ago and my insurance won't cover it. i honestly didn't feel like the rantidine was as good as Pepcid AC so i'm not sure if i need it. should I still get Zantac 150 and take 2 of those with the Pepcid and PPI? or am i okay on the Pepcid and PPI. and should I be taking the antibiotic initially prescribed?
- in general, am i doing ok or do i REALLY still need to follow up with a GI doc and GYN doc?
- it seems like most people here keep seeing their original colon/rectal surgeon. is it terrible to get follow-up care from a different colon/rectal surgeon? i mean, other people move and such, right? i'm only 30, so i'm not settled yet.
- to add complications: i will likely be moving soon, in with my parents in another state temporarily due to the $ issues. once i move to VA, i will have income and thus NO HEALTH INSURANCE, no savings, until i get a job. my only option will be free clinics.
In other words: i am completely screwed. buti want to make sure i'm not making my problems worse by putting off further medical treatment. Thank you so much for listening and trying to help. I am in such a pickle. ~KBLgal
