Not a flare but feeling very unwell? :l

Hey Everyone,

Hope you're all doing well. I've been in and out of the hospital what seems like every other month. Whenever they do my blood work it seems as though my inflammatory markers are normal. The issue I'm having is extreme epigastric pain and just feeling generally very unwell. I also feel like I have to go to bathroom urgently yet I feel constipated. And while all that's happening, I'm throwing up. Throwing up diminishes the pain for about 5 minutes until it comes back on. Last time I went to the hospital, the DR said I may have strained my diaphragm and he gave me some Voltaren gel. I also got some T3s (just a few) to get me through the next couple of days (they were giving me dilaudid in the hospital). I've been taking the T3s hoping I'll feel better but they just make me feel drowsy. The Voltaren isn't helping much either. Anyone experiencing something similar? I would love to hear some suggestions. This has been going on for about 4 years on and off and I really want it to stop.

My signature below will not update for some reason. My current meds are Imuran (150 mg), Remicade (2 vials every 6 weeks), Nortriptyline (25 mg at night)

UPDATE: I thought the vomiting may be due to constipation so I took some lax-a-day a couple of nights before. Now I've been having liquid BMs. Don't know if this is due to the lax-a-day because I've had it in the past and it has done nothing for me. I did notice some blood (scant amount, pinkish) as I wiped in my last BM (May 29th, 2014 @ 11 PM CST). My BMs have had mucous in them for about a month now. This looks like a UC flare to me now :l or perhaps I have c.diff (I've had it twice in the past). What do you think? Regardless, my GI doctors do not think my epigastric symptoms are related to my UC. Also, I've lost about 10 pounds in 3 days since I haven't been eating and I've been throwing up whatever liquids I take it. I know this sounds silly but I just hate going into the hospital so frequently. As soon as the ER doctors read that I have UC they wave off everything as being UC related and don't really think about what's wrong. Same thing every single time: rehydration with normal saline, gravol or ondansetron for N/V and dilaudid for pain and then they send me on my way. Then I send up there again once the effects of the meds wear off.

soystud said...
I'm better at questions than answers so here goes:

what your your symptoms leading up to your uc diagnosis ?

when was your last colonoscopy ?

is the Nortriptyline for pain or depression ?

that's all my little, tired brain can conjure right now -

sorry you're having a hard time -

oh ya, did you ever get your gall bladder checked ?

done

what your your symptoms leading up to your uc diagnosis ? bloody stools, diarrhoea, extreme epigastric and abdominal pain, nausea and vomiting, loss of appetite - I probably lost around 30 pounds in 2 months; it all happened really quickly

when was your last colonoscopy ? about 1 year ago

is the Nortriptyline for pain or depression ? probably for both. my GI said it might help control the epigastric pain and make my mood better. i followed up with a psychiatrist and she doesn't think I have depression but she said there's no harm in staying on it

oh ya, did you ever get your gall bladder checked ? apparently my gall bladder is fine. everytime I go into the hospital they say they've checked it

Thank you for trying to help. I really appreciate it :)

sherbear46 said...
So what do you take for the epigastric issues besides a pain med? Have you tried any meds for gerd? I would try some prilosec or something over the counter that may help to start with. Seems like your doctor is trying to help the pain but not helping the reason for the pain. Just my opinion though. I myself have horrible issues with reflux and have been on many different types of meds for it. Now I take a prescription. Protonix was great for me for many years. Now I take aciphex. I would try a prilosec twice a day or even zantac twice a day and see if you start to get some relief.

My GI doctors (we have a team of them) did an endoscopy about 6 months ago and said it didn't look like I had GERD. They're confused because it comes and goes randomly. They had me on Pantoloc and Diclectin both of which didn't help. Perhaps the issue is that they prescribe these to me once I'm already in a substantial amount of pain and I'm already vomiting? Correct me if I'm wrong, but I was under the impression that these meds do take a couple of weeks to work effectively. I had to stop these because one of my GI doctors booked me for a breath test for Helicobacter pylori. He said it was a long shot but he wanted me to do it anyways.

So what do you take for the epigastric issues besides a pain med? My GI doctors are convinced that the pain is very much stress related hence the Nortriptyline. Other than that I haven't been taking anything other than the T3s which I am running out of :l I'm going to mention the medications you suggested to my family doctor tomorrow (i'd go to my GI but I need a fix fast or I'll end up in hospital and it takes weeks to get an appointment). Thank you very much you answering. The GI doctors told me that epigastric main is not a usual symptom of UC. It's refreshing (yet completely unfortunate for us of course) to hear that I'm not the only one with UC who experiences this. They made me feel like I was making it all up in my head. I took a T3 and a gravol together for the first time tonight and it's made a huge difference but I can't just take gravols and T3s my whole life. Not practical at all.

kiptyn said...
What you describe is exactly what I experience when I have a severe flare: nausea, extreme pain, weight loss, diarrhea (sometimes), the feeling that you have to go but are constipated (tenesmus), blood, mucus, and vomiting.

For me, vomiting several times a day means I'm headed to the hospital.

Have you been tested for c.diff again? If that was negative, I'd request prednisone to see if it helps. If it does, it's probably a flare.

Your doctors should ignore the inflammatory markers being normal. Ask them if you walked into the ER with the same symptoms and no previous diagnosis of UC, wouldn't they consider UC (or c.diff) first?

Hope you feel better.

I haven't been tested for c.diff. I'm going to mention it to my doctor tomorrow. I think you're right about the Prednisone. As much as my doctors want me off of it, I think I might need to go back on. I won't get my c.diff results back until next week since I'd be giving my sample of a Friday. Perhaps I should just start the Prednisone. If it doesn't work I probably don't have a flare and if it does work, then I can rule out c.diff. I absolutely dread going to the hospital. Thanks for your suggestions and sharing your story. It was all very helpful.