I don’t want any more doctors, but…

This morning I requested an appointment at the Crohn’s and Colitis Center at Mass General.

I love my gastroenterologist.  He has a great bedside manner, he talks to me like I’m an intelligent person, and he’s never given up on trying to get me into remission.  But I feel like I’ve hit a plateau with him.  I’m not acutely ill anymore, but I’m not in remission, either.  I’m still going to the bathroom 6-8 times on an average day, although usually without blood.  I still have pain every day, albeit not acute pain.  I still can’t go anywhere without constant and quick access to a bathroom.  I haven’t had an accident in a few months, but I’ve come very close, close enough that I would’ve had accidents if I hadn’t been at home.

My illness is controlled, but not well controlled.

The worst is the non-gut symptoms.  The fatigue and weakness have made most of life inaccessible to me.  The joint pain is often debilitating.  I have constant nausea.  I believe a lot of that, at least the fatigue and nausea, are a direct result of the 6-MP.  The fatigue really flared up when their doctor on call upped my dose from 75 mg to 100 mg, but it hasn’t gotten much better since I went back down to 75.  Iron supplements help some, but I haven’t been taking them consistently because they make the pain and diarrhea worse.  Nothing is really helping with the joint pain, and it really doesn’t help that I’m allergic to NSAID’s.

I’d like to be able to go off the 6-MP.  It might significantly reduce my non-gut symptoms, or at least give me a baseline to know how much is the UC and how much is the meds.  But my gastroenterologist is hesitant to even reduce my 6-MP dose.  I get it, I do–it’s the only medication that’s made my UC at all manageable.  I’d also like to get off the steroids, but I flare every time we try.  Hurray for steroid dependence.

I think my gastroenterologist is just out of ideas because the typical treatment just isn’t cutting it for me.  There aren’t a lot of treatment options for UC, so I think I need someone a little more creative to generate some new ideas.  I’m even willing to consider surgery if it’ll let me go off some or all of the meds that are making me so sick.

I just want to be able to have a better quality of life.  I’m so sick of being sick all the time.

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15 Comments

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15 responses to “I don’t want any more doctors, but…

  1. Everything you said strikes me as good reason to consult with hot shots at Mass General. May have get an appointment and perhaps some new ideas to help you feel better.

  2. I sought out a specialist at a large university for the same reason, and it has been extremely helpful and worth the 60 mile drive every 2 months. Good luck!

    • I’m glad I’m not the only one. I kind of feel like a traitor to my regular GI, but I’ll probably still see him–I’m more just looking for a second opinion and some new ideas. For me it’ll be a 3+ hour bus or train trip each direction–the joys of not having a car! So it’s not something I could do on a frequent basis, but people on the internet have really good things to say about Mass Gen’s IBD program. Even if they tell me there’s really no options besides what my current GI is doing, that’ll still help because at least I’ll know and be able to come to terms with it.

  3. Hey there, I considered doing the same with my crohn’s treatment. I had an appointment at the Cleveland clinic in Miami just for another opinion. I felt guilty too, but it is your health and another opinion can’t hurt. I actually got off my 6-mp against my regular GI docs advice but have been in remission for several years now. Best of luck to you and please let us know how it goes!

    • It’ll probably be several months before I can get an appointment, especially with Thanksgiving and Christmas coming up soon. But I’m hopeful, and I’ll definitely fill everybody in once I actually get out there.

    • Did you replace the 6-MP with another medication? (If that’s personal, feel free to tell me to shut up.) I know CD and UC respond somewhat differently to various treatments, but I’d be really interested to hear what helped you get into remission.

      • No, I don’t mind talking about it at all. I was on pentasa (4 pills 4xa day ugh!), and the steroid route. Then we added the 6-mp. I stopped the pentasa but was stuck on steroids for years. I stopped the 6-mp while I was still playing around with my roids and eventually got off somehow. I get small flares here and there now, so I usually do a week or 2 of prednisone until it settles. I was honestly too scared to ever try those infusion treatments. I’m not sure if that helped you at all but I think the prednisone was the only thing that ever actually worked.

      • See, I can’t take prednisone because it makes me suicidal and psychotic, but I can’t get off entocort. I take Humira (injection, not infusion), but I don’t think it’s helping all that much.

      • That’s strange- the entocort made me crazy. Interesting how different things effect people. I know your appointment is a ways off but I really pray they find a solution for you! ❤

  4. mandy

    I’m so glad you have more options, people to consult. University hospitals are wonderful–they have the most up-to-date knowledge/treatments. We have a great one where I live. Even if it’s a bit of wait to get in, its something to look forward to. Hang on!

    • Yeah, I tend to favor university hospitals, as long as the baby docs are well supervised. I had my brain surgery at a university hospital, and my neurosurgeon and the other folks I dealt with there were great.

      People on a Facebook IBD group gave the MGH program glowing reviews, so I’m optimistic. If they’re good, then it’ll be worth the wait and the hassle of the trip.

  5. I’m so sorry to hear that you’re going through this! My little sister suffered from ulcerative colitis for years, and she had to end up getting the surgery where they take out her colon. She’s feeling the best she’s ever felt now, but I heard from her how horrible being sick with UC is. Anyway, she and some other UC fighters created an online magazine if you ever wanted to look at it: companionibd.com. It tells their stories and advice for people suffering with UC. She also has a blog called ucmewithhope.tumblr.com. Just in case those can help in anyway.♥

  6. I really hope the doctor can do something for you. I know how much this is impinging on your life. I hope they come up with some options for you. XX

  7. I hear ya- I love my doctors, they have been great, but it feels like we’ve reached a point where there are no new ideas. So I am probably going to be doing the same as you very soon! Good luck 🙂

  8. I hope that they figure something out for you.

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