Decisions Decisions

I feel that I have reached the point where I need to decide what my next move is. The budesonide isn’t working anymore. If it ever was. But anyways, my symptoms are getting bad again. The abdominal pain is back, along with my stools being messed up and let’s not forget the blood.

This has been going on for a couple of weeks. I was hoping that it would go away. Or get better. Something besides slowly getting worse. Currently I feel like someone is stabbing me in the abdomen. It’s also been hard to get going in the morning for work. It can take an hour or so before my stomach decides it’s awake and I never know how bad the episode will be when I get up in the morning.

So now I need to decide if I’m just going to call my GI and just go on the immunosupressors or if I want to go and get a second opinion. I’m leaning towards the second opinion just in case the other GI has seen a case like mine before. It’s worth a shot at least. I am worried about going on the immunosupressors especially since I work in a hospital setting. I’m not really sure how that would work. I may just have to wear gloves and a surgical mask.

I’m still waiting to see the final results from my insurance company. From what I can find out online I’m going to pay a much smaller amount. It looks like they’re paying for more of my hospital stay and they covered part of the Prometheus test. Now I’m just waiting for the updated bills to show up to know for sure. But if I do owe much less that will be a huge weight off of my shoulders!

6 thoughts on “Decisions Decisions

  1. Unless things get drastically worse, it can’t hurt to get a second opinion. From everything I can tell, immunosuppressants are standard protocol if you’ve failed the 5-ASA’s and steroids, but maybe you can find someone who knows other things to try.

    I will say the immunosuppressants are less scary than I thought they were before I started them, although I can see how they’d be especially worrying since you work in a hospital. I don’t work in a medical setting, but as a political organizer, I’m constantly meeting people, shaking hands, being crammed into crowded spaces with lots of people, and I haven’t gotten any serious illnesses. Just a few more colds than usual.

    Whatever you decide, good luck!

    1. That is really true. Maybe they’ll know something my regular doctors don’t. I wasn’t sure what the standard protocol was for stuff like that. And I haven’t really failed the steroids. They worked great but I definitely don’t want to be on them longer than I need to. The side effects are horrible.

      With the hospital there’s MRSA and staph infections. Which is worrisome. And then there’s times that they get those crazy super bugs. I have talked to a family friend who is a nurse and she said my best bet would be to glove up and wash my hands really well. Getting a few more colds than normal isn’t so bad. Although I do hate getting them!


  2. I’m so sorry to hear about this 🙁 have you changed anything in your diet or exercise regime? We agree with Hope that a second or even third opinion can never hurt.

    Also, immunosupressors may not be your first choice but it still is an option. Working in a hospital you are around all kinds of people – but also remember hospitals are far more sterile environments than most! Meanwhile, ensuring that your body is getting all the right nutrients, enough sleep, and exercise may help tons! You’ve probably built up a pretty good immune system from working in a hospital as I know I did when I worked on an ambulance for three years.

    Also, are you taking an acid controller? Tom recently found that taking Prilosec daily has worked tremendously!

    Do what you feel comfortable with. Stay proactive and you’ll find the solution :). We have faith in you!

    1. I’m supposed to be taking more fiber. That was to help with some of the harder stools I was having but now I’m having the opposite problem. I don’t exorcise as much as I should and I’m working on that. I’ve just been working late hours recently and haven’t been able to make it to the gym. The biggest difference has been going off of the prednisone I think.

      I repair xray equipment so I never know what’s in the dust and sometimes it’s not as clean as it should be which worries me. I’d hate to get MRSA or staph. And sometimes hospitals can develop those super bugs.

      I haven’t heard of taking an acid controller for IBD. I did start taking glucosamine and chondroitin caplets and that has seemed to start to help with the joint pain I’ve been having over the last couple of weeks.

      Thanks for the support 🙂

      1. You know what’s funny about fiber? Tom takes more fiber and it has the opposite affect on him than me. For me not having IBD, it provokes loose stools. For Tom, it’s the opposite! Maybe give that a try?

        Exercise is so hard when you work late. Can you do it in the morning? Or get some of the adjustable weights to do at home?

        Tom was getting crazy cramping pains the past week. He noticed that he felt better when taking it. Maybe the acid in your stomach is causing pain as well?

        1. I definitely need to work on taking more of it. It might firm it up but I’m also passing blood and mucus. My doctor wants me to get up to 25G a day of it.

          My schedule should be setting down some within the next day or two. I’d rather not do it in the morning. It’s when my stomach is bugging me the most. I do have exorcises I can do at home those nights I don’t make it to the gym. Better yet I should take my dogs for a walk. Then all of us can get some exorcise!

          My pain is normally in my LLQ. I had stomach cramping when I was on Lialda but I don’t take that anymore. I also get stomach pains if I eat too many foods with a lot of fructose but I really watch out for that. I hate how I feel if I eat too much of it.

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