What should I do next?

fruitgirl said...
You need to call your GI and ask for advice. If you're that sick, they should either see you in their office ASAP or advise you to go to the ER. Explain that you feel the staff there looks down on you, and if they still tell you to go to the ER, request that they call and let them know to expect you. Also ask if the GI on call will come see you in the ER.

Honestly, as sick as you are, it seems to me that you should be admitted.

sherbear46 said...
I would call your GI and see what he advises at this point. You can't continue on as you are. But it does sound like you need a trip to the hospital. Sorry I know that isn't what you want to hear.

DBwithUC said...
You can get fluids at the ER. IF you can't drink them, then at some point you will need to go for fluids. BUT, the ER is not going to do much to further diagnose any motility, energy, or IBD issues if you are stable after getting fluids. That is not how ER's work, and except for extreme cases with lots of bleeding, hospital inpatient is not how IBD is treated.

I do not think the Pantiloc is going to make you better. It primarily treats the esophagus and works against acid. So it is only mitigating the effects of throwing up so much, maybe making your stomach a bit less sour.

It can also aggravate your UC because more food proteins get into your gut w/o being broken down, and in rare cases people can develop food allergies with long term use.

You have stopped both your immuno-modulator and your anti-depressant, and are relying only on Remicade. You are self medicating with narcotics that are left over from old prescriptions. (These can even cause nausea. Something to think about.)

You are becoming dehydrated. It sounds like you don't have a GI appointment set up, and have not spoken with the nurse at the GI office. You have found the hospital has not offered you much in the past, yet seem to want to go in again.

I would have a very clear sense of what exactly you want them to do.

I would also try to force fluids, maybe also taking some pedolyte. Even if you throw up 15 minutes later, a good amount will be absorbed. Try everything to avoid dehydration.

Maybe instead of an antacid medication, try to get an anti-nausea medication. Once the nausea is controlled try to resume the Imuran and anti-depressant.

How long until your next Remicade infusion?

You are in a hard place, and I sympathize with your discomfort and fear. But unless you get very dehydrated the ER does not strike me as the answer. Having stopped oral meds, I think you need to be seeing a physician - not just having your mom go get some pills. No doc is going to prescribe too much of anything without seeing you. The ethics of prescribing get iffy when they have not physically seen you in some time.

notsosicklygirl said...
Maybe you should see a different GI if possible? Are there others in your area that you could possibly get in to see? You can see yours when there is availability but right now, it sounds like you need to get a plan. Can you use rectal meds or is it too difficult? I think you should try to continue taking your regular medications if possible. I am sorry you're feeling so awful. I haven't seen you around here lately, I thought you were getting a well deserved break from UC.

hateuc said...
So sorry Gina. You have been through a rough run....reminds me of scum1,who also had a rough run with infections etc... Seems he is doing better now. Hugs to you.

teddy92 said...
Hey Gina! Like others above, I'm so sorry to hear about your story but also wanted to chime in and send some positive energy and all the hope that you get well soon! I am really happy to hear that you have family support - I can totally relate, as they really kept me going too during extended hospital stays. Having friends and family to visit really made me feel lucky when I felt like my luck was not so great. I also hope you are able to get back on track with your health/med decisions and get back out there! We all have so much to contribute and your perspective with these challenges, although I wish wasn't the case, may put you in a special place to help someone else! You never know, right?

Also, I hope that your infection is under control and that you have found people to listen to you. Do you know what caused the infection? I haven't heard of a Campylobacter jejuni infection, and am wondering what places one at risk?

teddy92 said...
Aw of course, I can totally relate! I really wish when I was first diagnosed I had reached out more to others. It was an incredibly trying time, as it affected me in a very painful and personal way (as I'm sure it does all of us!). The timing was weird too - I had worked so hard to push myself to excel through university, and I felt so incapacitated while sick for months and in the hospital while all my friends went on to begin life after college! After being in so much pain for so long, I felt so isolated and was terrified at the prospects of the disease and treatments. And was so rocked by my deteriorating condition and being refractory to high doses of pred, which only made things worse and made me a crazy individual haha! I remember spending hours, when not sleeping or in too much pain, just lying awake staring at the hospital tv (often times the Kardashians would be on and I couldn't even be bothered to change the channel, just staring at their inane antics like a zombie - I still laugh at myself when I think about this). I felt like I had become a completely different person. During this very vulnerable time, I was really lucky to have one of my providers reveal to me she had dealt with a rocky childhood with severe UC. She had been through the ringer and back, but was able to make it through school and even ended up devoting her career to helping others that were going through similar tough times too! She also ended up going through surgery after treatment failure, so if you end up going with that route/meds don't work, you can hopefully look forward to some relief and a bright future! She was a huge inspiration to me, and I think that regardless of what career or path we take, the perspective that this gives you allows you to make a profound difference when speaking to someone going through any sort of personal health trial.

Many months now after getting better, I realize that I am a different person in many ways, but I'm also very much the same - just with new challenges and motivation to make a difference in a way I hadn't previously expected. My self esteem took a nose dive for a bit, but I've been really working on it and trying to use my healthy time to be as positive for others as I can be. You just being on here and making a post is helping out, no matter how small! For every person on here, there is someone else in the hospital too, reading your story and realizing that they are not alone. I also can't believe amongst everything else you've had C.Diff twice! I am so scared of getting C. diff every time I have to be given antibiotics now for recurring infections and admire you getting through that. It really seems like you are fighting through some challenges, but I hope you find the strength within yourself and realize how important you are to all those wonderful people in your life. And how important you will be to all those you may touch in the future. But I remember how difficult that is when you're so overwhelmed, and so I think its also important to give yourself credit for taking all these hits and even just getting through the day.

As for the C. jejuni, wow. Isn't it weird how you do everything you're supposed to but still something like that happens out of the blue? I'm super meticulous too now since getting on Remicade. To the point where my friends make fun of how paranoid I am! I always smell like different scented hand sanitizers. It's ok though, I own it! And will take your message to heart and keep on washing my hands!