New Gastroenterologist
I saw the new gastroenterologist today. He might not be my ideal gastroenterologist, but it's a step up. He was at least a little more aggressive than the previous gi. I had been worried about having to explain why I'd like to transfer my care, and he didn't even ask.
He also explained some things. He explained that one of the reasons gi fellow and friends might have been confused was because my path wasn't entirely consistent with ulcerative colitis. Apparently, the scattered granulomas hiding out in my colon are somewhat suspicious for Crohn's disease, as is the fact that I loose ~10lbs/week every time I'm sick. As is the fact that anything I eat seems to reappear virtually unchanged 4 hours later. (ok, tmi, I know. Sorry) Everything else is suggestive of UC, and that's probably what I have, but... apparently it's not entirely clear.
He also decided to start me on a couple of different drugs, Lialda, which appears more effective for UC (and costs my insurance company a tidy $1600/month minus my $15 copay), a short prednisone burst to get me back into shape to get to San Diego tomorrow, and after that 10mg prednisone/day. Which is liveable.
He also started the conversation about total colectomy with J-pouch vs biologics/Imuran. He also laid out a long term plan. Try this new regimen, plus the UC/Crohn's diet (which old gi doc hadn't even shown me... it's a funny diet. Limits fruits and veggies, but deserts are to be eaten "as desired" . Clearly the people who wrote this have no idea how much I desire desert! Made me laugh.), if it isn't working ok in a month, repeat the colonoscopy to shed more light on the diagnosis, and see if it can be made certain. He seemed awfully positive about a laparoscopic colectomy with j-pouch (in fact he said he usually recommends that over the biologics/immunomodulators, because it is curative for UC,), but his doubt about whether I have UC or Crohn's Disease makes me feel like it might not be such a good idea. Although I don't really want to go there (either to the colectomy or to the biologics/immunomodulators), I appreciated that he laid the plan out for me so clearly.
The diet seems somewhat restrictive, but I plan on cheating.. I mean experimenting... once I'm better. And actually, I'm already feeling better. I've been able to eat some stuff today (and now it's certified inflamed gut friendly). And actually drink. As much as I hate it, there's nothing like prednisone for turning stuff around.
Here's hopin...
Labels: doctor as patient
posted by Midwife with a Knife @ 3/12/2008 08:34:00 PM
14 comments
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14 Comments:
I take a biologic for another problem and the experience has been good. And it's not irreversible like surgery.
But I don't meet the numbers of people you do.
Annette
Hmm, I have crohn's, and I am part of a community of IBD patients (many of whom seriously object to the idea that colectomy can "cure" UC for reasons I will outline below). I've done immunomodulators and biologics (and may soon be doing biologics again). You're a doctor and you know about the colon being an important organ for fluid balance and that sort of thing. I would also argue that colectomy does not "cure" UC so much as it alleviates the symptoms -- many patients are still prone to extra-intestinal manifestations of their UC (joint pain, skin problems etc) after colectomy. Having a pouch leaves you at risk of having a recurrence of disease in your rectal stump, and you also run the significant risk of chronic pouchitis. Then there's the risks of general anaesthesia, surgery recovery time, pain, adhesions (which I'm sure you know may limit your future fertility, if you're interested in it) etc. etc.
I'm not anti-surgery by any means (hell, I've had some myself), and I can see how "curing" UC would be tempting so you could just get on with your life (and apart from having to drink a hell of a lot more water, maybe you will be cured and get on with your life), but I personally think excising an organ is a big step to take without seriously trying the alternatives that will allow you not to excise the organ. The drugs have risks too, but those risks are (to my mind) more predictable and manageable than the risks of surgery.
In your shoes, I (and this is my personal opinion, I'm not a doctor or a med student, just a patient) would want to a) be very damn sure I had UC and not CD b) Give the drugs a college try (imuran took a full year for me to see real benefits) c) Assess the impact on my life of extra-intestinal manifestations. In the end, if I chose surgery, I'd probably go for a total colectomy, rather than a pouch, because then you really have no risk of recurrence (nor pouchitis).
In the end, though, everyone is different, and your personality (and any limitations placed on the drugs you can take and still have your career) are the most important things in making this decision. I know you're a smart cookie, and you're going to look into all your options. If you want a good place to talk to patients about colectomy, pouch or not, medications etc. I recommend IBD Sucks.
I'm glad you and your new GI doc have "a plan" and that you are now able to eat/drink more. Give the diet and drugs a "college try" as anon says.
Here's fingers crossed hoping the new drug and diet work well for you. Have a good trip. too.
Lots of decisions, and wait and see, and who knows for sure. All that uncertainty can be tough to handle - I hope the new diet with lots of desserts works well. I'm glad you are feeling better.
I'm going to mention my husband's experience, which may be probably will be neither here nor there for you. You've probably been told every "cure" in the book.
Anyway he was diagnosed with IBD and was completely miserable much of the time. He lost loads of weight and was being extremely restrictive with his diet, was on anti-inflammatory meds, etc. He's always been a high strung guy, and given that our daughter had been diagnosed with anxiety disorder, and had been helped by meds, I kept wanting him to see the doctor about the possibility of meds for his anxiety. Now just for his IBD but for other reasons as well.
He finally got desparate enough to try, the doctor put him on Lexapro and within a day he felt much better. As the weeks went on his condition improved, he was able to eat more and more.
Now he can eat everything and never has a problem. For him every stress, etc. went straight to his gut.
I only mention this because no doctor he saw ever suggested a link between anxiety, stress and his IBD.
Best wishes!! Marie
Well, if it is Crohn's or mixed type, what about one of those elemental diets for a month? Stop the leaking proteins and stuff that make the immune reactions worse? Is that diet close to this?
Sounds like he is more thoughtful though...which is good. Keep us updated.
My husband has been battling with UC for 10 years. After trying to avoid surgery for all that time, taking Immuran and Remicaide, nothing really worked.
He had a colectomy with end-ilesotomy. Even though having a bag may not sound like a lot of fun, he is thrilled. He goes to the bathroom only to pee and empty his pouch on his schedule.
Don't feel down about the whole do you have UC or Crohns. Everyone goes through it at some point because if you really have Crohns and you do a colectomy, it can be harder to manage because it doesn't "cure" like colitis does.
Keep fighting.
Holy cow! The long comment from "anonymous" is exactly what I (a doc) would tell you! I've been on one biologic (Enbrel) for lupus and it was easy (weekly SQ injections at home) and worked quite well for a good while. Not a single side effect.
Mostly, HALLELUJAH (can you hear me singing) for the new doc. I applaud his approach and thoroughness.
The new doc sounds good!!! The organisation and plan sounds very positive. Yay!
And do keep us informed about how the diet - let us experience the desserts vicariously...
Glad you're starting to feel better, and you've got a new GI doc!
Hope the prednisone continues to work its magic :)
Hope that by now you are feeling much better. It sounds like your new doc has a great plan, but I second firming up the diagnosis before you dive into such a drastic surgery. If only there was a way to decrease your stress level! (Nearly impossible, I know!) Have a restful weekend!
anon: Yeah... I feel a little cautions about the biologics, though after my dad died from a cancer of unknown origin a few months after starting remicaid for rheumatoid arthritis.
anon2: Oh, you're absolutely right on the diagnosis issue. The goal with CD is to stay out of the belly as much as possible. Actually, I'd rather risk the pouch than a total colectomy though. I did check out IBDsucks, but I found it a tad annoying to navigate, and gave up.
rlbates: college try's in progress. And actually working!
bardiac: Drugs and diet seem to be working, actually.
christibale: Thanks. I would only consider an ileostomy if I were in a life threatening situation. Same with a colectomy in the context of CD.
essiewb: Thanks. Yeah, at least he's thinking about stuff in a more comprehensive way than the old gi doc. And I would certainly get all kinds of second (and third!) opinions before I would have a colectomy, it was, in a way, nice that he talked about a possibility. Looking at the numbers, 30% of people with UC and pancolitis get colon cancer, and a total of 40% of patients with UC and pancolitis eventually end up with a colectomy. It had been one of those things I'd worried about but was afraid to ask about. For him to bring it up in the context of "its not the worst thing in the world", made it a bit less scary.
dragonfly: Thanks. :) It's funny how well those things worked.
xavier: :) I hate the prednisone, but it does have its own fair share of magic.
Dr. Whoo: No worries, I'm not signing up for the surgery right now, but I'm actually worried about it a lot less now that gi doc brought it up.
Good luck with your new diet/therapy. When I researched medical nutrition for a while, I was surprised to see what seemed to come up to aggravate IBD, and what did not, at least according to food diaries.
I wanted to know if you have seen any information on Saccharomyces boulardii. It is a probiotic that has been used to treat Crohn's and UC.
Here is one study on it:
http://www.florastor.com/client_images/2003_guslandi_a_pilot_trial.pdf
I don't have access to this review:
Clinical Infectious Diseases; 2/1/2008 Supplement 2, Vol. 46, pS96-S100, 5p, 2 charts
because of an embargo, but the abstract makes it seem like it is supportive of its use, but I can't tell if it is just for its better researched use for C. diff diarrhea or for IBD.
I think S. boulardii is pretty safe, and can be used with any other therapy you are using. Just a thought.
My daughter has an undiagnosed digestive disorder that seems like Crohns. She started a diet called the specific carbohydrate diet and when she stays on it she improves. Just another diet to try.
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