Frustrated with These Doctors

Nick-S-Frustrated-with-DoctorsIntro:

28 year old workaholic and father of three. I love the outdoors and doing anything to enjoy life. I was diagnosed a little over a year ago with ulcerative colitis and I have been doing everything in my power to not have it hold me hostage.

Some more about Nick:

I love my work and family. I am very fortunate to have a job that I can enjoy both whenever I like. I am definitely an outdoorsmen and love to hunt and hike.

Symptoms:

Right now I am in the middle of a full blown flare. This flare is worse than any other I have experienced. It all started with getting a stomach bug from one of my kids.

Nick’s Story – Frustrated with These Doctors

So let me start off with that before I had a flare up I was your typical mid 20’s guy. I did not even have a primary care doctor.
Let me tell you this was probably not the best decision. I come from a family of medical professionals ranging from doctors down to nurses. They would always tell me I needed to have a primary care doctor.

When I had my first flare up and found that first bloody stool I was at Fenway park watching a Red Sox Yankees game and I completely passed out in the stall. This was quite the experience because I woke up slumped into the wall and had to gather my thoughts. It was pretty damn scary!! Somehow I stayed the rest of the game and drove the 2 hrs home without crapping my pants. I will never forget that night.

So on to what’s eating at me right now. With my flare ups I get some crazy joint pain. Since my first flare up I have gotten myself a primary care doctor. On my first appointment I explained to them all about my UC and they even have the records from my GI doctor. I explained to them that I usually know a flare is coming because I will start to get sore and even my eyes start to have a burning sensation.

When I recently went to her to try to get something to help with this pain because it’s pretty much unbearable she told me almost flat out no. She was treating me like I was some drug addict just looking to score.. This frustrated me tremendously to the point I told her to give me a drug test and I will pay out of pocket. Of course she did not budge. Instead she was kind enough to tell me to take Tylenol as if I was a moron and not already doing so. She also proscribed be Voltarin gel which did absolutely nothing.

I do not look like a drug addict and to be honest I barely even drink.

I don’t even like taking prescription drugs as much as possible but this pain when I have a flare is absolutely insane. I really need some advice here. I have tried everything without using medication from meditation to heat packs and nothing has truly made it so I can function.

So what’s your thoughts? Has anyone been through this before?

Any advice would be greatly appreciated.

P.S. My GI Doc referred me to my primary care doctor to help manage the joint pain during a flare.

Medications and Treatments Tried:

I have tried everything from heat packs to meditation. Nothing has helped the joint pain during a flare.

written by Nick S

submitted in the colitis venting area




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8 Responses to Frustrated with These Doctors

  1. Adam
    Adam July 5, 2015 at 1:27 am #

    Hi Nick,

    Thanks for sharing your story with us and letting us know what’s going down with you. First things first…stop watching and supporting the Red Sox(known to throw UC’ers into flares over and over again)

    No, actually, I think you should realize if you haven’t already that joint pains are super common for people with UC. We’ve done quite a bit of group research/surveying here on the site over the years and looked into this a good amount. And most certainly it is very common and many people think of it as one of if not “the worst” part of the disease. I myself have dealt with this exact “joint pain” stuff along the way, and heck…it’s nasty.

    As for what to do. couple of things I would suggest:

    Find a Gastroenterologist doctor who you like to work with. If that’s the one you are seeing right now great. If not, change it up. UC stays around for a long time right…so in my opinion, it is well worth the time and investment in finding a GI you trust, who listens to you (even though he/she may not agree with you 100% of the time), someone who is responsive to questions you have if/when you phone/email their offices… someone who can perform a colonoscopy at a reasonable location for a reasonable price, and someone who has experience with other people living with IBD (crohn’s / colitis etc…). I think that last point is key. Usually not too much fun being the one and only IBD patient for a specific GI doc(in my opin).

    Next, I think you should give a read to the joint pain survey results:

    https://www.ihaveuc.com/99-person-colitis-joint-pains-survey/

    And next, in my own history, the year after my diagnosis in Oct 2008 was hell. At times the joint pain was so tuff that I did resort to pain meds. I forget the name right now, but it was a prescription pain pill and oh yes…it was vicodin. It worked great and more than anything allowed me to get some decent sleep at night which is critical to our body and brains functioning as nature intended. So even though you are way anti medications (and I’m all about that thinking btw, I don’t use meds to treat my UC for years now), but in certain instances, I think medications can do wonders for us. And since drinking a bottle of whiskey just to fall asleep was not an option for me back in 2008, the pain meds came in very handy.

    I wish you the best and keep us updated on how thigns go and keep on smiling like you do in your picture and you’ll be back at it in no time.

    Peace, and happy 4th of july weekend to you,

    Adam

  2. Andy July 5, 2015 at 3:07 am #

    I don’t know if there are any strong pain meds you can take with colitis – all of the opiate based(oxy, codiene etc) ones result in constipation which can lead to toxic megacolon in UC! Probably best to avoid.

  3. Michelle July 5, 2015 at 7:06 am #

    Nick,

    I have all of the same symptoms you do: ulcerative colitis, joint pain and sore, red eyes.

    It is so important to get a GI doctor who is sympathetic & responsive to your situation because you will have a relationship with that doctor for a long time. My 1st doctor was not responsive to my situation so I switched right away. That was back in 1999. My new GI dr. put me on medications to relieve my symptoms and also referred me to a rheumatologist for my joint pain and to a hemotologist for the anemia I have as a result of the colitis. My eye dr. Prescribed something for my eyes too.

    The combination of all of these doctors working to treat my symptoms has resulted in me having a normal life and being able to function at home and work.

    It took a long time to get the right combination of meds/treatments and It makes for a lot if appointments to keep track of but it was totally worth it!

    I hope you find help and relief. Don’t give up hope and don’t be afraid to push for what you need to get better!

  4. Graham from England
    Graham July 5, 2015 at 8:18 am #

    Nick,

    If you want to avoid the drug route wherever possible then this may be for you. The two were unconnected but I started taking lots of Extra virgin olive oil for my colitis and though I didnt realise for quite a while it actually had a dramatic effect on a long term back problem. It worked amazing on my UC and then I mistakenly took just plain olive oil (there is a huge difference) and my UC returned, as did the back pain.

    Its a long story but good quality EVOO has a powerful and proven anti inflammatory (oleocanthal) not to mention the many other benefits it provides. It works like a nice maintenance drug that reduces inflammation throughout the body but without any side effects whatsoever.

    If you can find the good stuff and try it for at least 2 weeks then you may be on it forever.

    More details here.

    https://www.ihaveuc.com/evoo-2/

  5. Arlene July 5, 2015 at 1:52 pm #

    Try taking the herb Turmeric containing bioperine. It is a great anti-inflammatory, not only good for joints but helps with UC inflammation. It’s been a Godsend for me in contributing towards keeping me in remission It’s equivalent to prednisone, without the nasty side-effects. Best of luck to you !

  6. Marge July 5, 2015 at 3:31 pm #

    Hi Nick.
    I so sympathise with you, it’s hell. One thing that sure helped my joint pains is Solgar Flaxseed Oil capsules two a day. It takes 2-3 weeks to kick in but it’s great for me. If I stop taking them the pain returns.
    Also, my UC was almost constant flares last year but since I started the SCD last October I’m much improved, I still have mild flares if I cheat & improve within days when I reign it back in! I’m still on max dose Colazide & I get a flare if I reduce the dosage, hey one day I’ll be drug free. I live in hope. I told my Consultant GI & he was in agreement with me ‘helping’ myself by diet. Thanks to Adam for SCD info. Obviously, I’m British and very fortunate to get expert help & investigations for free!
    I hope you feel better soon. Staying positive is not easy when you feel shit, but there’s light at the end of the horrors.

  7. Ethan July 6, 2015 at 10:48 am #

    You should ask about the pain medication Tramadol.

  8. Lymes July 7, 2015 at 9:01 pm #

    You need to get checked for Lymes disease. The joint pain could be Lymes coming out as you flare.

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