Hello. I have had a j pouch since 1998 and was just diagnosed with cervical and vaginal cancer. I've been told that the pouch must be removed for effective treatment, as the pouch will not tolerate radiation. Also, the surgeon believes clear margins cannot be obtained because of the close proximity of the cancer to the pouch. She wants to remove the pouch, give me a permanent ileostomy and then a hysterectomy followed by a course of radiation. I'm trying to explore all my options regarding the pouch removal...anyone with any input or advice?

This message has been edited. Last edited by: Lisa B,

I don't have any answers just curious why the pouch would not tolerate radiation. I think id ask my gi or colorectal surgeon about that.

I don't have answers either, but, I think I'd explore a bit more before just biting down on what this surgeon is saying.......

I'd be in contact with some serious specialist.

Just my $0.02

I'd also get your CR surgeon to weigh in on this doctor's recommendation.

Sue

Is this advice coming from your colorectal surgeon or you gynecologist/oncologist surgeon and have both of these specialists agreed on this as your treatment plan?

I know my story is minimal compared to what you are experiencing and I am sorry you are facing this. I would like to share my experience prior to my jpouch surgery and the need to press the surgeon to make sure you have both your colorectal surgeon and gyno/oncologist surgeon involved in your treatment decisions.

When I had to have my jpouch surgery, my first colorectal surgeon would not even discuss the issue that I had an enlarged uterus (where other possible issues may have been going on from a gynecological standpoint at the same time). I was concerned that there may not be enough space in my cavity to create the jpouch (may sound silly I know), and all he could offer me was the creation of an 'S' pouch if room was an issue or a permanent ileostomy and he remarked 'I would adjust' to the latter. I did not want an 'S' pouch due to all the complications I researched about it and I was willing to do anything to avoid a permanent ileostomy (at least at that time).

After more researching and more colorectal surgeon visits, I found my current surgeon who hooked me up with a fabulous fertility/gynecological specialist. The first thing my colorectal surgeon did was order a biopsy of my uterus (via my gyno at home) to ensure I did not have cancer or anything else going on prior to my surgery. He then sent me to the specialist who did an ultrasound and measured my uterus and the fibroids I have in it. He assured me right at that visit that I would have enough space for my jpouch. I have a hysteria of dysfunctional uterine bleeding and fibroids, thus the reason for my enlarged uterus.

Upon my insistence, my colorectal surgeon had the gynecological surgeon in the operating room the day I had my jpouch surgery in the event I needed a hysterectomy or fibroid removal prior to creating my jpouch. Since space was not an issue, my surgeon created my jpouch and the gyno surgeon did a thorough exploratory of all my female parts at the same time to ensure me all was well after I came out of surgery.

Please make sure you have both of these specialists working in tandem for your treatment. I feel if you have the correct specialists that you may not lose your jpouch unless possibly the gyno surgeon has no experience performing hysterectomies on people with jpouches and as a result is requesting removing it (which I really hope is not the case). As far as the issue with the radiation harming the pouch, unfortunately I cannot speak to that. Best of luck to you.

LisaB,

To maximize the amount of responses to this thread I would suggest you edit the title to say "J Pouch removal due to cervical/vaginal cancer?" This will distinguish your thread from the numerous other threads concerning J Pouch removal due to pouchitis and other issues within the J Pouch itself.

quote:

just curious why the pouch would not tolerate radiation

I share this curiousity since the J Pouch is simply made of ileum/small intestine and is nothing more than an extension of your small intestine. I have heard that radiation therapy can cause shrinkage of tissue in certain organs and I am not sure if this is the concern or what it is specifically. I would ask the surgeon what, specifically, his/her concern would be about the J Pouch being subject to radiation.

Having had radiation treatment for rectal cancer done before J pouch surgery I was told that the small intestine is far more sensitive to radiation then the colon. I would assume that your radiation oncologist or surgeon knows that the pouch is going to be in the radiated area and will receive doses of radiation that will damage it. I suppose you could ask them about doing a temp loop ileostomy and see if the J pouch survives the treatment. If it is anything similar to what I went through you definitely do not want to undergo this treatment without an ileostomy as the radiation can be very painful in the anal area and having a pouch makes that area much more "active." Good luck, hope things work out for you.

Thank you. I have a pet scan on Wed to see if the cancer is in the lymph nodes. If they are clean, then the surgery is scheduled for 1/17. I am going to my next appointment armed with alot of new information, i.e. temporary loop ileo. Also, if a pouch is removed, can a new one be created? It's sad to me because I have never had one problem with my pouch in 14 years. Thanks again

It would be wonderful if they could give you a loop ileo and disconnct the pouch from your spincter muscles. Then possibly move it bsck up with the small intestines and hold it in place there some way. It would probably cause too much scaring or adhesions.

I've read about people having new pouches made and about people dicsonnecting to let their pouches rest - but they don't disconnect from the spincter muscles when resting.

I hope your PET scan doesn't find anyu other trouble spots. Please let us know how you are doing so we can send good thoughts and prayers your way.

Hi Lisa,
First off, I am so sorry that this is happening to you...so unfair.
I had my k pouch done at 18, at 23 I was diagnosised with vaginal cancer (stage 4 displasia) and was told to have everything removed immediately. I didn't (very personal choice...not necessarily reccomended to others)...I was changing my life and changing countries the next day (moved here to France)...so I brought my medical files with me and decided to have a 2nd, 3rd and 4th opinion. In Paris they gave me 6 months, in London they just wanted to remove the cervex and lining of the vagina(they called it a 'cone' procedure)...when I came home 9 months later (so much for the French opinion) my oncologist took a wait and see stance...in the end they lasered my vaginal cavity and cervex (very, very painful) and put me on topical and oral chemo...if I remember well this whole process lasted about a couple of years...due to my younge age I refused to have a hysterectomy hoping to still be able to have kids...(never happened).
The only opinion that I have to give is that every doc is going to give you a different protocol, different opinion and different idea...make sure that you like and trust your doc, get alternate opinions, and that you are comfortable with talking openly with them about your fears and concerns...my personal choices could have cost me my life but for me that was an acceptable loss...loosing my pouch and uterus was not...(yes, probably very stupid)...
Good luck and keep us posted on how things go for you.
Sharon

Possibly can your doc consult with some of the experts at Cleveland Clinic?

Could you have internal radiation therapy to minimise damage to the small intestines???

The dose of radiation and the volume of tissue that needs to be treated will exceed the tolerance of the pouch.
My prayers are with you,
Markus

Thank you. My list of questions has grown quite a bit!! I'm an 11 year lymphoma survivor, my j pouch is almost 14 years old so I'm ready to fight with all I have
Thanks again for all the advice and prayers!