Advice for Vaginal Hysterectomy with Ileostomy?

Replies
14
Views
1670
wouldyouforrme

I'd like any information, advice, referrals for doctors that did a phenomenal job with a vaginal hysterectomy, with a patient that has an ileostomy. I have the operation set up; however, my doctor is concerned with the complexity of me not having a rectum, etc. I'd appreciate any insight! May you all have a very happy Thanksgiving!

w30bob

Hi would you,

When a doc is concerned... it's cause for concern. I checked hospital ratings for those in Utah for GYN, and sorry to say the two that made the list were pretty far down. They scored something like 36 and 30 out of 100. Not sure if you plan to travel to one of the best facilities or not, but if I were you I'd at least call the top 3 for GYN, i.e., Mayo Clinic, Sloan Kettering, and the Cleveland Clinic, and have a televisit with them to discuss the best path forward. Those 3 scored 100 or a bit less. Ratings obviously take into consideration a lot of factors, but the success rate of difficult patients ranks pretty high. Hope that helps.

Regards,

Bob

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,381 members. Get inside and you will see.

It's not all about ostomy. Everything is being discussed.

Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Earth Angel
Reply to w30bob

Bob,

You are truly a blessing to all of us ostomates. You are always so helpful and go out of your way to do research in helping others. Thank you for being such an angel - you are greatly appreciated!

Happy Thanksgiving

wouldyouforrme
Reply to w30bob

Bob,

Thank you so very much!! The research you did is going to be so helpful! I appreciate you very much!

Axl

I hope you get everything that you desire.

Axl

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Ritz

Would you....

I have my complete hysterectomy years before my ileostomy and Barbie butt were born, but I do have some information.
I met a woman that had her hysterectomy after her ostomy and butt done. Although it was a difficult surgery, she had both her ostomy surgeon and her gyn dr performing it. After the hysterectomy was complete with the assistance of the ostomy surgeon, the ostomy surgeon closed the internal cavity.
Mine was closed as well and not together, but we talk, both of us have no sexual disjunction.
I agree with Bob, get a team on board at a larger hospital...

Good luck and please keep us posted

lovely

I agree with Bob about a second opinion. Please keep us informed as you can, it can also help others. When is your schedule set? Best wishes

w30bob
Reply to Earth Angel

Hi EA,

If I'm a blessing... you guys are in trouble! And if you keep calling me an angel, I'll have to keep my forked tail tucked in all the time.

Seriously, thank the internet, not me. Because people ask so many questions, the internet has actually become a viable tool for finding information that takes just seconds to find, where it used to take days and lots of phone calls in years past. You still need to apply a good dose of common sense to search results, but just about any question you have has already been asked and answered a hundred times over. Despite its many flaws, the web is finally becoming a useful tool, as it was originally envisioned. Go figure!

Thanks,

Bob

Earth Angel
Reply to w30bob

Bob,

The internet is a big help, however you're the one searching for answers for others! That is a huge help and comfort. Although I called you an angel, we all know you can be a little devil too lol!
Thank you for being both.

DreamAngel 10

I had my hysterectomy surgery in 2015. I also have an ileostomy. This procedure should not be done via laparoscopy. Mine was done by opening me up actually using the same cut from my ileostomy surgery. You should also have a surgeon in there that does ileostomy surgery because in the event your small intestine gets perforated, which it can do due to the fact it's floating around.

So they marked my stomach in the event they had to relocate the ostomy. I didn't need another surgeon in the OR because my doctor is an oncologist gyn and performs ostomy on patients that have cancer.

lovely
Reply to Earth Angel

It has been said Bob is our resident Dr on this site.

wouldyouforrme
Reply to DreamAngel 10

Thank you so much!

wouldyouforrme
Reply to lovely

It's Dec 22. However, I may wait and do more research. Thank you so much for your kind words!

mikamouse

I was given a total hysterectomy while my main surgery was my bladder removal, where I was given my urostomy. I researched the very best doctors after I was given a doctor I researched and was not impressed with, and would not settle for. Remember... THEY WORK FOR YOU! So I now have a five-star best doctor I could have asked for in my area! And I had complete trust in him and his abilities. You can say no to a doctor... it's your life. So that is what I did and how I did it!

Best wishes

Panko

Hi, when we start this journey, there are so many questions we never ask at the beginning of this conveyor belt of hospital appointments. Various consultants, if you're having several surgeons working on you at the same time, if it's a major operation. It's like getting caught in the headlights as a rabbit, not knowing which way to turn? You automatically think you have to go with the first surgeon/consultant you see? But you do not, even in the hospital in the UK, you can choose to find the right surgeon? I chose my surgeon to begin with as she was well recommended in the gastrointestinal department, but knowing what I know now, she gambled on fitting my colostomy bag first, then leaving my tumor the size of an orange in my rectum. 3 months later, I had radiation and chemo orally for one month consecutively, then had to wait 2 months for a CT scan as things are foggy for that time, then found out my rectal tumor had advanced locally to my seminal vesicles, prostate, and bladder! So instead of shrinking my tumor, it grew even bigger and further. In the end, this surgeon, who was a big fish in a little pond, had to admit defeat and refer me to a top surgeon up in London at St Mary's Hospital, who specialized in radical surgery, traveled the globe operating on people, and is an honorary president and professor at the Mayo Clinic in the US. It took from September 2018 until May 2019 to get my rectal tumor operated on. If I had been referred in September to this surgeon, which I believe I should have, I would still have my bladder, which is a bigger problem than my colostomy bag, as it's like your plumbing without a stopcock, it's relentless. Also, my operation would have been about 10 hours instead of 25! I wish I knew of this surgeon to begin with rather than a chancer! Good luck