Checking in After 4 Months on SCD and Need a Boston-based Gastro-Doc

Introduction:

I am 52, live in the Boston area, was first diagnosed with UC at age 30. Have had 4-5 flairs since diagnosis and now I am just over one year of active UC. I believe job stress was the culprit but things have improved on the life front, so I am hopeful.

Some more about me:

Prior to the current flair I would run occasionally, work out and surf in the spring and fall. It has been hard to do any of these, so I am hopeful to get back to it.

Symptoms:

Currently, I am at a 4 out of 10. Prior to going on Prednizone last fall I was an 7-8 and then for a time after stopping Prednizone I was pretty bad. Now after 4 months on the SCD I see slow improvement, less pain, less everything. I think it will take time but I would rather be a 4 in 10 than deal with the horrific symptoms while on Prednizone.

Checking in After 4 Months on SCD

I wrote to you all a while ago. After some bad times with lost jobs and big bills, my colitis flaired in early 2012. Asacol did nothing then I went on Prednizone, which I stopped in March, cold turkey. My doctor said I was becoming dependent and Remicade was the next step. He didn’t tell me it was a long…very long term therapy, so I never called my doctor again.

So I studied the SCD diet and figured it was worth the effort to commit to the recommended minimum of one year. It is hard, but I am getting used to it. I imagine it is like what a smoker feels like, meaning you always want the bread, pasta, sugary cereal, chips, French fries, candy, cake… You get the drift. The typical household including mine has this food around and I just can’t eat it. What I would do for buttered bread, pizza, French fries! Oh well, like home and your first love, you just can’t go back…

On the plus side, I lost 21 pounds ( 188 to 167) which I needed to do anyway. And besides my symptoms I do feel generally better. I do notice at times throughout the day I can get pretty run down, so I really haven’t gotten used to maintaining my calorie intake to avoid that. Things could be a lot worse…

With improving symptoms after 4 months of the SCD diet, I would like to find a Boston area gastro doctor that recognizes the value of the SCD diet, since I am still interested in a lower impact drug therapy to help things along.

So, if you have a recommendation please post the names. I hold no one responsible and I will do my own research. You can email me directly at coarnold@comcast.net Thanks Chris

Medications:

Prednizone is a demon, Asacol does nothing for me so I need to find a doctor that will incorporate my SCD diet into a plan that may include lower impact drugs to help things along.

written by Chris A

submitted in the colitis venting area

7 Responses to Checking in After 4 Months on SCD and Need a Boston-based Gastro-Doc

  1. shelly in maine July 25, 2013 at 4:21 pm #

    Hi Chris,
    Glad to read of your progress/update. Any improvement is improvement nonetheless! Baby steps.
    I do not specifically have a name, but if you scroll to the bottom of the page you will see under Resources and Adding Stories box there is a spot to click on “write a Dr. Review…click on that and it will take you to another spot to click on read Dr. Reviews that Adam has compiled.
    Good luck in your search and remember that the. Dr.’s are just now getting on board with diet and probiotics..but not all of them! My Dr. Doesn’t disagree just hasn’t seen enough validity. My primary care Dr. Is a D.O. and is amazing with the alternatives.
    Best, Shelly

  2. Joan H
    Hope July 25, 2013 at 8:23 pm #

    Hi Chris – I would check out the doctor list Adam has posted on this site under “Home” where people write their MD reviews. I have a great MD in Albany, NY which is probably a three hour drive for you, but I’m sure there are some Boston doctors listed. CCFA usually has a list of MD’s in your area too. Glad you’re seeing improvement, keep up the good work!

  3. Joan H
    Hope July 25, 2013 at 8:26 pm #

    I meant to say under “About”. :)

  4. Dede Cummings July 26, 2013 at 10:11 am #

    Dear Chris,

    So glad to hear you are better. And also I wanted to say hi to Shelly in Maine, and she has given you very good advice, as did Hope. I’d like to get the name of the doctor in Albany, Hope. Is that something you can email me? Dede@livingwithCrohnsandcolitisbook.com.

    Chris, I think you are on the right track. As Shelly mentioned, the doctors are slow to catch up with us patients, Especially concerning diet. Currently I am on a diet that is similar to the Paleo diet. I’m having really good results. I don’t eat any grain, or dairy, at all. As you mentioned, the first week was really hard. It was like quitting smoking. I love to have oatmeal and rice. But now, nine weeks into it, I really am feeling better. The biggest change I noticed, is that I am not bloated anymore. I really hope this new diet works, because I am going to have to go to the G.I. in the fall and be tested again.

    Chris, I was thinking, perhaps you can find a naturopathic doctor in the Boston area…. I work with the G.I. and naturopathic doctor. I also get acupuncture once a month. One naturopathic doctor I have heard good things about is James Belanger, ND in Lexington, Mass… That is pretty near Boston! I hope that helps, and keep us posted—you are doing so well!

    • shelly in maine July 26, 2013 at 11:35 am #

      Hi Dede,
      Congrats on all your recent adventures and success…kudos to you and wow, what an inspiration. I’m glad things are looking up for you!
      Been thinking of you and reading your blogs.
      What did you decide for meds/not meds?
      Be well, Shelly

    • Joan H
      Hope July 26, 2013 at 2:57 pm #

      Hi Dede – I tried your email but it didn’t go though for some reason. My Dr is Carla Fernando-Gilday in Albany – I added her to the doctor list under New York and there’s a review there. There are several really good MD’s and PA’s in her office and I’ve been happy with the people I’ve seen over the years. Hope that helps – Hope

  5. Dede Cummings July 26, 2013 at 3:12 pm #

    Hello to my new and old friends on ihaveuc. Shelly: yes, I rocked the half marathon for the CCFA.org ;-) I wish I could have run with Adam–haha!!! He ran it a year or two ago; but, I ran by myself and had a great time. It is hard to run a half if you have not trained properly… My fault! Also, I am not eating any grains or dairy, so my body needed carbs, and around mile 11, I got wicked cramps in my calves. But my Crohn’s-colitis has been low-keyed and not reading it’s ugly head since I started the diet. The SCD is an awesome ace to start—I am lucky I found it, and Chris and Hope, it really helps to have support from the GI team and alternative, more
    Holistic care…

    I am not taking any meds. All the GI’s say I should take Remicade and 6MP. My “gut” says “No!” I feeling Adam, and this whole site is the only place I really have to go to and vent. It is scary to say no to the GI’s, but Chris is right—it is a lifetime commitment that I take seriously. I’m doing as much naturally as I can! SCD rocks! So does ihaveuc.

    So, no meds, no symptoms, and I work with a naturopath and follow the advice in my own book, and Adam’s book.

    Carry on! Chris, are you keeping track of what you eat? Are you getting massage and exercising, doing yoga/meditation? I am into that lifestyle stuff for maintaining your health… Getting lots of sleep, too ;-) I see so many posts that say stress is a trigger, so psychologoi al counseling is really helpful, too.

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No matter what, colitis flares don't last forever, don't forget it:)