New to Forum. New to Crohn's

[Liliskivt]

Finally my google searches paid off. Happy to have found an outlet, advice, etc.

Diagnosed in Jan 2011. Only one major flare September 2012 - hospitalized for 5 days but no surgery.

Currently on Budesonide 9mg. Have been since April 2012 (minor flare).

After hospital GI wanted to immediately switch me to Humira. Did not want to make any changes due to wedding October 2012.

Went for second opinion at Mass General this week. Waste of time. Had faxed all records month before the appointment and the doctor hadn't even OPENED my file prior to the appointment.

No one seems to have consistent advice on safety of meds. I was med free for a year before the minor flare in April 2012.

1. Looking for any GI recommendations in CT

2. Advice from women trying to get pregnant/pregnant and which mess they went with ( saw there is a pregnancy thread but wouldn't let me access without doing two posts)

Thanks!

 

[Angrybird]

Hello and welcome to the forum

Has the tum now settled again? With regards to the Humira is does seem some docs like to start from the top down but there are other meds out there that can be used, perhaps have a look at our treatment section for some more info in this area: http://www.crohnsforum.com/forumdisplay.php?f=16. Based on the fact that you flared on the Budesonide does indicate that a maintainence med may now be required for you.

I myself am on an immunosuppressant called mercaptopurine and am 26 weeks pregnant, my doc has experience with using this has a treatment for crohn's for pregnant women and I am just monitored more closely and have a couple of extra scans to make sure baby is gaining his weight properly. The way it has always been explained to me is with some meds they are a lot less harmful to the baby compared to trying to go through pregnancy with active disease which if things are really unsettled can increase your risk of miscarriage.

With regards to a doc I cannot help you there as I am from across the pond, we do have a doctor review section that is worth having a look at: http://www.crohnsforum.com/forumdisplay.php?f=79.

Please keep us updated on how you get on.

AB
xx

 

[David]

Welcome to the community! I'm glad you found your way here

We have two highly ranked doctors in Connecticut. Hopefully one is close to you.

In addition to the female only forum, we also have a parenting/TTC forum located here. TTC is "Trying To Conceive" in case you aren't familiar with that acronym.

Personally, improperly managed Crohn's disease is pretty scary to me. That you weren't on any medications is worrisome. I'm glad you're at least on Entocort now. As for what medication to use if you are pregnant or trying to conceive, that's tough. It really depends on the individual. Some people need to stay on the strong stuff because of their disease state. Others might get away with less powerful drugs or exclusive/partial enteral nutrition.

Again, welcome!

 

[Liliskivt]

Thank you both for your response and information. Very overwhelming. But I guess I have the rest of my life to read and learn about the disease and find what works best for me. Thanks again!

 

[muppet]

Hyams is pediatric. I also need to add my review, I've been meaning to. I'm afraid it will bring his score down quite a bit.

For adults, Dr. Karasik is INCREDIBLE and he practices at Hartford Hospital in the Seymour building. His office can be reached at 860.246.2571. I've been through half a dozen GIs and he is the only one I could put up with, and he's practically a genius. A very smart, thorough, and cautious doctor. I can't recommend him enough (I need to put up my review for him, too.)

I'm distressed to hear that your Mass General experience was a waste of time. They have such a good reputation. I think you definitely need to see somebody sooner than later about what meds are appropriate for you as most often just budesonide alone is not nearly enough.

Good luck!

PS - CT GI, with whom Karasik practices, has offices all over the state. I think he goes to Bloomfield, Glastonbury, and Farmington in addition to Hartford. Dr. Blitzer is also pretty excellent, but I'm not sure if he's taking new patients.