Supporting Husband Needs Help...

[SupportiveHusband]

I've joined the forum in hopes of meeting others whom can aide me in locating better medical care for my wife whom suffers from extreme crohn's. We are located in the Concord, NH area and her options appear to be limited. She sees a GI at Mass General, local Physician is associated with Catholic Medical Center and frequently visits CMC & Concord ER. Over the past year she has been hospitalized 6 times due to Crohn's related complications. Her most recent was Christmas day.

She is 36 and the most incredible woman - beautiful, intelligent, hard working and giving. Others have always taken precedence over herself and now that she is seeking help from medical community, every turn the doors are shut. Today the local pain Clinic at the Elliot Hospital in Manchester, NH stated they wouldn't provide any assistance due to her age and due to it not being cancer or other condition such as back...etc..

Her daily routines are severely limited from the pain. A few years back, she had crohn's related surgery and the surgeon did not provide proper wound care and she had a massive infection and was cut open from bottom of sternum to pelvis to rectify. To make matter worse, her intestines are now fused to the abdominal lining -- so every step she takes is even more painful and severely limits her daily activities. She also has 3 bulging hernias that several surgeons, not always in the most professional way, have stated they would not operate due to intestines being fused.

I am just so frustrated with the medical community and lack of treatment options or lack of knowledge of crohn's care. My wife is the most incredible woman in the world and I just want her to be as comfortable as possible.

I will admit that I do not know much about Crohn's. We have only been married a year but it pains me to see her in constant pain then reach out for help and have the doors slammed in her face.

If anyone has any advice or can point me in the right direction...I would greatly appreciate it.

John

 

[mish2575]

My Doctor, Jacqueline Wolf, at Beth Israel in Boston is tops!! I've been going to her for about 7 years. I highly recommend her. If she can't help, she will find someone who can. All my doctors at BIDMC are amazing.

http://services.bidmc.org/Find_a_doc/doc_detail.asp?sid=41414849414442

I didnt realize she had her own website! LOL:

http://www.drjacquelinewolf.com/abouttheauthor.html

 

[Dragonfly72]

I see Dr Korsnick (sp) out of Brigham and Woman's hospital in Boston. He is great and takes good care of me. He is the head of Crohns and colitis and was at Mass General prior to coming to B&W. I am sure he would see her and review her case and see if he can help her, if not like above he would point her in the right direction! I will keep you both in my thoughts and prayers. Please keep us posted!

Michele

 

[Jennifer]

Hi SupportiveHusband and welcome to the forum!

I'm sorry to hear about your wife but I'm sure she'll find proper care soon. Have you looked at our Doctor Directory here: http://www.crohnsforum.com/doctor/

I'm going to tag Afidz as she has a lot of experience with hernias. Maybe she might be of more help in that department.

Are you both able to travel?

 

[afidz]

My suggestion would be to go to either a GI surgeon or a colorectal surgeon asap. It is not safe for your wife to be in such a state.
As Jennifer said, I know quite a bit about hernias. I have a very hteful relationship with them. My last surgery I had to do a bowel prep the day before in the event that my intestines were fused with my abdominal wall and they were damaged and I needed a resection. Luckily, everything went smoothly.
This time, I am assuming for the same reason as above, I am having a GI surgeon instead of a general to repair the hernia and a plastic surgeon to try and reconstruct my abdominal wall.
If you CAN travel, I would definitely look into a hernia clinic (or maybe there is one by you). I know there is one in Canada that I considered going to a while back. I recently found a clinic in Dallas (where I live) that seems to be able to solve my problems. I have a consultation at the end of the month and hope to be having surgery in February.
I wish you and your wife my very best. I know how tough this disease can be, and add a severe hernia like in your wife's case , I know first hand how miserable she is. Hope to hear from you soon

 

[lgpcarter]

It is the Shouldice Clinic in Toronto that is famous for hernias. But they only do certain types and you have to be almost a perfect specimen of a human to qualify. They have a medical questionaire on their site you can look at.

I would definitely seek a second opinion. Given your location, Boston is most obvious choice. I do not know any 'big names' there but if you want to come to Canada, let me know

As a woman with a very supportive husband I would also like to say thank you. As much as this disease sucks for the patient, it is also very hard on family members and other support persons.

 

[mac4943]

I see doctors at UPMC Pittsburgh. They have one of the best surgeons there.

 

[afidz]

I found this program at Mass general hospital, not sure how far away it is from you, but its worth a shot! It seems like it is very similar to the clinic I am going to for my next surgery
http://www.massgeneral.org/generalsurgery/services/treatmentprograms.aspx?id=1538