Any suggestions would help for symptoms management - (do not want to go on Pred again)

Hey Everyone,

It's been a very long time since I've posted on here. Basically, I was diagnosed with UC in 2010. I can handle most of the symptoms associated with UC pretty well but when I get really sick I CANNOT stop throwing up. It comes to a point when I stop eating and all I'm throwing up is bile. I keep throwing up because it releases the pressure I feel around my very bottom of my sternum. In fact, I make myself throw up because it's the only thing that stops the pain for a little while (around 30 minutes).

My currents medications:
-Remicade (I go about very 6 weeks and to be honest I don't know how much I get - the infusion lasts about 3 hours(
- Imuran (150 mg) - I currently weigh about 110 pounds - Is this not enough Imuran to control my inflammation?
- Pantaolc 40 mg 2 times a day (morning and night)
- Diclectin 10 mg 2 times a day (morning and night)

Additional Medication I'm taking to help with pain:
- Tylenol
- Benadryl
- Some Diclofenac topical cream (I place it where I get the pain at the sternum)

* The doctor did prescribe NEXIUM but I'm waiting on insurance coverage.

A lot of people have told me to treat both sides (pills and enemas) but my issue doesn't seem to be related to my large intestine from what I see. My inflammatory markers always come back fine. My doctor has always told me that my UC seems mild. It's making me think is this even UC related? But I know for sure this started in the few months leading up to my UC diagnosis.

Any advice or suggestions would be appreciated. I am seeing my GI tomorrow. Any questions you think I should ask her, please let me know? I'm a student and I've missed a LOT of school because of this issue and everyone says school is not a race but you can't help but feel behind when you miss a year or two.

PS - I absolutely do not want to go back on Prednisone (although it seemed to help a lot). I have been on Prednisone on and off since my diagnosis (so about 3 years). I have a VERY difficult time coming off of it so if I ever go back on, I'm scared I'll never get off.

Thanks a bunch for reading. I really appreciate it. :)

Scott Z said...
Throwing up bile is NOT a symptom of UC...go have your gall bladder checked immediately....!

There is a huge prevalence of UCers with gall bladders being removed (like me!)

Oh shoot :l I've mentioned this to my GIs (5 of them - they're part of a team) countless times. They didn't seem too worried. This has been happening for years now. I've just been told that if I'm not eating and I keep throwing up, I'm going to end up throwing up bile so I should eat. I always lose my appetite when I'm throwing up :l This seems serious. Thanks for letting me know, Scott. I'm going to bring it to their attention again, tomorrow!

Are the Remicade and Imuran not doing anything at all? From what I understand real UC can't be anywhere else but in the large intestine/rectal area.

garylouisville said...
Are the Remicade and Imuran not doing anything at all? From what I understand real UC can't be anywhere else but in the large intestine/rectal area.

I think they are helping in terms of the large intestine issues but not with me throwing up bile. From what Scott said above it seems like this isn't a UC issue at all. Are you thinking the same, Gary?

kazbern said...
Hey, you're the one who's inducing vomiting according to your post. You say you are doing this to relieve pressure. Stop inducing vomiting.

Perhaps you should talk to your DRs about the pressure you feel in your GI tract. What does it feel like? When does it happen? Have you had an upper GI done?

I had an endoscopy done in 2010 and 2011. My previous GI had said potentially GERD but she herself said it wasn't an official diagnosis. I can stop inducing the vomiting but it's eventually going to happen from the pain. The pressure becomes a VERY sharp pain and then I throw up. From the past, when it's gotten to that point, I've had to go to the ER where they give me morphine or dilaudid to stop the pain. I really do not want to go to the ER. I end up staying in the hospital for a while. As to when this happens, it's quite random. Usually happens in December or April but honestly, it can happen whenever. I'm trying to figure out what's causing it but I just don't know. I don't think it's caused by certain types of food though.

Imuran tinkers with stomach acid from my personal experience. Have you considered getting off or reducing the dose?

PoopinTom said...
Imuran tinkers with stomach acid from my personal experience. Have you considered getting off or reducing the dose?

I've thought of it but my GI said that I need to take a proper amount of Imuran because I'm on Remicade. Something about not creating antibodies against the Remicade and the Imuran preventing that from happening :l

kazbern said...
I don't think that is the right understanding of the "combination therapy" that you're on. Mixing biologics plus Imuran improves success rates for IBD treatment overall from what I've read, but if the side effects of the Imuran are too much then it is worth discussing getting off.
I would not go willy nilly into a gallbladder surgery in hope of relieving symptoms that bother you biennially.

Thank you, kazbern. I'll talk to my GI and see if the Imuran is causing this. The thing is that this has been going on before I was ever on Imuran which makes me think that Imuran isn't the culprit but it may be making things a lot worse. Definitely worth asking! Thanks again.

I'm not advocating going willy nilly into surgery, I mean you need testing to prove the gall bladder is bad.....

kazbern said...
I wonder about the seasonal nature of your issues. April & November? Easter and Thanksgiving?

Exam time :/ I've been told it might be stressed induced but I don't feel that stressed out. Maybe I'm just not seeing it.

Does exam time mean more coffee or soft drinks? Worse eating habits? Less sleep? Sitting at a desk instead of walking around?

You're very welcome. When you eat or drink, do you get a pain almost instantly? I can't remember exactly how it felt but it was there.

Scott Z said...
Good point kaz.....+ the screen name.....I was once also told that UC can have a seasonal component...semesters....

making yourself throw up, I hate to say the words......_____ing _______er

no disrespect intended.

None taken. You may be right but I think it's more to it than school stress. I'm not one to stress much over exams.