Crohn's Disease Help

Updated on November 12, 2012
J.E. asks from Northbridge, MA
8 answers

I am on a mission for my big sister who has a VERY severe case of crohn's she has been through surgery after surgery for the past 15 years and will be celebrating her 35th birthday in the next couple of months. She had a temporary bag put in and has just gone in for another surgery to be told that there is too much damage and they recommend removing the colon and having a perminant bag. The surgeon recommended that she get a second opinion and she is looking to find the 'BEST" colorectal surgeon she can in hopes that they can repair her without the need to have a perminant bag, at least now..Is there anyone from around the Boston area that has been through a similar situation and can recommend a surgeon? We also just lost my dad very unexpectedly less then 2 months ago and she is already soooo depressed. I want to try to do anything I can to help her! Thank you!!!! .

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So What Happened?

Thank you to all of you reponded! My sister goes for a follow up with her dr this week and hopefully will be referred to someone for a second opinion. I will be sharing all of your information with her as well!!!! Thanks again!!!

More Answers



answers from Boston on

Hi - I'm sorry for the delay in replying - I was waiting for my brother to get back to me, but hopefully it will still be of some help. My brother went through this at a very young age (19/20) he first had a colostemy bag and then had the surgery to reconnect his colon, which seemed like a brilliant solution. But to be honest with you it has a low success rate and he was literally in and out of hospital for the next 6 years (the scar tissue caused huge problems and he was often really sick, lost loads of weight and always felt horrible). He made the decision then to get rid of the reversal and go back to a bag - mainly because as much as he hated the bag (mentally) at least he wouldn't feel physically ill all the time. The surgeons that he recommends at both at Mt. Auburn in Cambridge, Ma: Dr. Ruymann: office - ###-###-####. Another guy is Dr. Admin Kasperian, also at Mt. Auburn, he's one of the head honchos. Good luck with everything - I hope your sister get's the help and advice she needs.

2 moms found this helpful


answers from Cumberland on

Without a doubt- Dr. Brian Long:

He saved my life!!! He is the best surgeon-have her go to Sibley Hospital in Washington, DC-they will take good care of her-Best of luck!

1 mom found this helpful


answers from Houston on

One of the best GI surgeons in the country removed my gallbladder last year. I'll give you his name and number, and he might be able to refer you. (He's here in Houston.)

Dr. Wade Rosenberg, ###-###-####

My awesome gastroenterologist is Dr. Ian Sachs, ###-###-####. He is the kind of doctor who won't stop until he figures it out.

Good luck.

1 mom found this helpful


answers from St. Louis on

I cannot help with the surgeon, but I would highly recommend you get her some of Jordan Rubin's books. He was diagnosed with Crohns and was in and out of hospitals for years. He would be a great help and inspiration to her.

- Patient Heal Thyself (make no mistake, I am not suggesting she is going to heal herself at this stage, but he has some great uplifting messages, diet suggestions, post-surgery recommendations, etc. he is amazing!)
- The Raw Truth is also good

Just google him and see if he has books your sis would be interested in. I have had many sick friends and family members (including me) benefit from Jordan's knowledge.

And best wishes to you and her.

1 mom found this helpful


answers from Washington DC on

I have Crohn's and a permanent bag ... I no longer have a large intestine or anything "south" of there. My surgery 20+ years ago that resulted in the bag literally saved my life. Your sister needs to listen to her docs who know her case best. Surgery may, in fact, be the best option. I'm 43 years old ... First surgery was at 22; most recent was at 40. I'm alive today because of the surgery ...

All that said, Dr. Sean O'Donovan ( is one of the best in the country. He's in Virginia ... But may be able to help.

Btw ... If your sister needs someone to talk to who's been there done that, PM me ... I'll be happy to "talk" with her. Crohn's sucks, but until you've been through it, it's hard to understand just how much. Kudos to you for being such a supportive sister.

1 mom found this helpful


answers from Washington DC on

There should be a support group in her area. A friend of mine in NY just went through surgery a couple of months ago and he's been an active member of his local support group. I hope that she can find the best surgeon she can and has a good recovery. I wish her all the best. My friend says he feels the best he's felt in years.



answers from Pittsburgh on

This guy looks worth checking out. He is in NY so you could always get an appt with him and then have him refer you to a Boston doc.


answers from Boston on

Please contact me. I have a friend who was in this area (isn't now but has many ties here) but was in a similar situation and about to lose her colon after multiple surgeries. Her situation was due to ulcerative colitis but is sounds similarly depressing. I'll connect you with her. FYI she still has her colon and no symptoms at all.

I don't live far from you so perhaps we can meet and get my friend on the phone?

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