Need to vent... everything is going wrong. :(

Hey guys.

I think I'm having a nervous breakdown. For the past few years I've been dealing with not only UC but something else that I can't explain. The UC is the only thing the doctors seem to pay attention to but my other symptoms keep getting worse and worse. It doesn't help to have an over-the-top, demanding job at the moment either (I'm working 14-16 hour days right now against my will).

On top of the UC, I've been getting muscle spasms and heart palpitations. The muscle spasms started recently and they come and go, however they still freak me out. My arms, shoulders and chest has been affected. I've been having the heart palpitations for so long (more than a year and a half) that I'm actually used to them which is crazy in and of itself. I've ran it by several doctors and they all just tell me that it's stress.

Lately I've been having pain under my right rib cage as well. No idea what that is about but my stools got really light around the same time. Also, my urine is very dark in the mornings which I think might be Asacol however its also very cloudy the rest of the time which I can't explain. Sometimes it's so cloudy I can't even see the bottom of the toilet. I've had slightly burning urination for more than a year now and I've pestered doctors to take a look at it, especially when I was in the hospital for three weeks last year however I couldn't get them to take it seriously. It never got tested.

Since starting the prednisone, my wrists/joints have been cracking a lot, especially my right wrist. My ankles too. I can crack them several times a day and people can actually hear it.

On top of all of this, I have a nasty sinus infection that will not go away. I've done two courses of antibiotics and saw a specialist... no one will give me a CT scan or really take a look. They just keep throwing the same meds at me over and over again. I've got pain in my temples, my jaw, the top of my head, behind my eyes and in the bridge my nose.

I've seen multiple doctors about all of these things but no one will take me seriously or investigate. I'm really trying to see a decent GP at this hospital I go to (the best hospital I know of) but every time I ask to make an appointment they tell me no. I was actually crying on the phone the other day, begging to be able to make an appointment with a doctor and they just kept saying "sorry" and eventually hung up on me. I'd go to the emergency room but ERs here don't operate the way they do back home (they wouldn't admit me unless it was really life threatening).

So I can't sleep and I stay awake at night, knowing I have to work from 7am until 10pm again, googling my medical conditions trying to find an answer because a doctor isn't going to help me. Since I'm always travelling, I've actually seen doctors in three separate countries and I seriously can't get any help. When I went back to Canada I was really excited about being taken seriously by a doctor however since I don't have real estate or bills in my name, I'm not considered a resident and don't have any health coverage. I just paid cash for Asacol and told the doctor to give me some antibiotics to treat any possible STD that I could possibly have (because the dark/burning urine has been freaking me out forever).

Anyway, I just needed to vent. I just wish I could get help. I'm thinking of just not going into work tomorrow and forcing myself into that hospital to get help. I already put in my one month's notice at this horrible job anyways.

I should also add that I quit smoking a few months ago and I'm starting to wish I hadn't quit because the quitting is what kick started the sinus infection and the UC flare up. I have no idea what symptoms are related to smoking and what are related to other stuff. I wish I knew.

I know this isn't UC related... It's nothing related. You can probably see why a doctor won't even bother, it's just too much. They have other patients to see. I just needed to get it off my chest and hopefully hear back from someone who has had a similar experience.

Edit: apologies again, this post is a mess!

Post Edited (Wavefunction) : 4/5/2011 12:23:43 PM (GMT-6)

I agree - since you've already put in your one month, I'd take the time to go to the hospital while you still have your health insurance (unless you don't have it...).

But I bet working less hours will definitely help you - and yes, seeking out another specialist for your other problems would be a good idea. If you have burning when you pee, maybe you had an UTI? Chronic UTI can also lead to kidney failure, so this is something you should get tested right away. It can explain your other issues with fatigue.

Good luck to you! Take care of yourself first!

Hi wave sorry to hear you are feeling rough at the moment.
I would think the pain in your jaw/temples/eyes and nose bridge are most likely the sinus infection with pain being caused by mucus blocked sinus passages. Trouble is that swapping around on antibiotics can push you into UC issues. You could ask for a swab culture so the Dr can give you the antibiotic the bugs are most sensitive to rather than just the standard lottery. With your right under-rib pain, pale poo and dark urine - I would be thinking that these may be signs of gall stones. Are the pains more noticeable after a more fatty meal? If you look into the whites of your eyes is there any trace of yellow? This can come and go - especially it it are small stones that sometimes block the bile duct and sometimes don't. The muscle spasms could be stress or perhaps a low vitamin/calcium/magnesium issue - have you have bloods done recently that could also show up any gall bladder issues?
It's really stressful when problems stack-up but if you can push for an appointment that might get you on the right track again.
Best of luck
Sue

Wave, I can't think of anything to add that the others haven't already said, except to say that I'm sorry you are feeling so overwhelmed and - gosh, it's certainly understandable!

As nssg said - we're here for you!
((Hugs))

     I agree with everyone too.  Prednisone can do some nasty things to your system.  You also may be having panic attacks.  Perhaps your GP could give you something for anxiety.    Have you had your heart checked out?  I don't know your age, but I had terrible heart palpitations when going through the change of life, which was at a fairly young age..38 at the start.

I am also thinking gall stones or gall bladder disease, UTI/bladder infection, and anxiety/panic attacks. I hope you feel better soon and can get some good help.

Thanks for all the advice and encouragement, everyone.

I had an appointment with the gastroenterologist today. I'm fairly happy with the results. He decided to drop my Prednisone from 30mg down to 20mg. At first I was a bit resistant about this because I'm still having a little bit of blood and a little bit of mucus. He told me that the hospital has a policy about long term steroid use and that if they steroids are effective in the beginning, they don't hesitate to taper unless the symptoms are really bad. He said that everyone who goes on steroids inevitably ends up on Remicade and that I will be no exception. If I continue to flare after I'm off the prednisone, I'll be going on Remicade. The doctor seems to be very confident in that particular drug however it seems like a lot of people here are confident about it. Imuran didn't work for me (it gave me horrible joint pain) so I guess Remicade is the way to go...

As for everything else, he blamed stress, deficiences and a collapsed immune system. He is going to recommend me to a different specialist to deal with the heart palpitations and so on. I was going to ask about checking my kidneys as well as my gall bladder but I was so frazzled that I didn't get an opportunity so maybe next time.

I also saw an ENT specialist about the sinusitis. He just gave me mystery pills for five days. Let's see how it goes.

Luckily, I'm starting a new job at the end of the month with much better hours. I'll be working from 3:30pm-9:30pm every day as opposed to being on call between 7am - 10pm like I am now (now I work an hour, rest and hour etc. all day). This clears up my mornings to go to the hospital and get whatever treatments I need. Um, yay?

Thanks again for everyone's help. I really don't have anywhere else to turn about all this... having UC is enough but having all this other stuff is just a nightmare. When I started this thread, it was 3:00am and I was unable to sleep due to panic attacks. I'm feeling better now. I'm just thankful that nothing causes me *major* pain.

I should also add that all of my treatment and prescriptions are 99% covered by the government. I only pay about $2 for a hospital visit and $5 for a medication refill regardless of what the medication is. I spend more money getting to the hospital than I do in the hospital. Once I start taking Remicade (and I'm assuming that I will) it'll be free, thankfully.

I'm excited about this prospect because I didn't find out about it until today. Ulcerative Colitis is considered a "special designation" and sufferers get nearly universal coverage for it. So if anyone can think of any alternative treatments or medications I should ask about, I'm all ears!

subdued said...
I don't understand why you would take a medication that is known to cause certain side effects when you are already experiencing those side effects. Aren't you concerned that your side effects might get worse? And then Remicade increases the risk for serious infections. Why is your GI advising you to go on Remicade if you continue to flare after tapering off pred when you probably are already suffering from infections?

I'm going to get to the root of my problems long before I consider Remicade. It is something to consider down the line, not right away. I'm going to be seeing other doctors over the next few months and hopefully they'll be able to get to the bottom of it.

subdued said...
Has your GI talk about surgery yet? If your GI thinks that Remicade in inevitable for your case, then perhaps he thinks that surgery is inevitable too. Have you asked him?

Remicade was approved here a few years ago and doctors have been nationally pushing patients off of steroids and onto Remicade. They think that the risks of Steroids outweigh the risks of Remicade and that it is a more viable option. The way he said it made it sound like they put most people with serious UC on Remicade unless it doesn't work for them.

Surgery is definitely an option for me, especially since they no longer expect people to have a bag attached to their stomachs for the rest of their lives.

I don't know... I'd prefer to be on just Asacol and nothing else. I think I'll try that and if I can't get this flare under control then Remicade would be a long term option.

Post Edited (Wavefunction) : 4/6/2011 8:09:20 AM (GMT-6)

That's great news wavefunction. it sounds like you got some of your concerns addresses and you have a plan, that's a big step. I hope you can get off of prednisone successfully but at least you have a plan and you sound hopeful about Remicade. My GI always has great things to say about Remicade for UC. I wish I lived in Canada where I could get treatment no matter what, here, you have to rely on your job for health insurance. Different jobs have different levels of coverage. You could end up paying $50 a month for prescription or 30% of your doctors visits, it's a really bad system in my opinion... I hope you're feeling better soon.

Sage words. It doesn't sound new agey at all, either. Every year, the medical community learns more and more about how too much stress impacts us physiologically and how mental dispositions can trigger physical disturbances if they aren't checked in time.

In my case, some (most?) of my symptoms could be related to an anxiety disorder (such as GAD). Or they could just be a result of a never ending cycle of stress. Who knows but what I do know is that if I change my overall attitude towards life and start letting things go, like you said, I might be a lot healthier as well.

It's funny, you'll still meet doctors that believe stress is a purely mental problem. Strange that supposed scientists would be dualists considering everything that makes us, us is physical.

That being said, lowering my stress level is definitely a plan for this year.