So terribly sorry Mo,
How are you doing now?
Sharon

I'm sorry you went through this. What a nightmare! I would think it's the robotic surgery, not the surgery itself that is to blame.

I had a total hysterectomy and once my doctor found out about my surgeries and innards she told me that even though she initially was going to do the surgery laparoscopically she wouldn't risk it. She did full open surgery. I did fine.

I just read a story about some DaVinci surgery in Belgium in which the robotic arm broke off during prostate surgery and doctors were not able to pull it back through the keyhole incision. The patient had to have open surgery to remove the robotic arm.

I would think robotic surgery would be great - when it works.

I'm glad you're mending.

kathy

I have something -the latest opinion is a benign tumor -on or by my ovary. It keeps growing and shrinking, growing and shrinking... I get regular pelvic ultrasounds to keep tabs on it's status. I am totally terrified that it will need to be taken out and they will ruin my pouch. The doc says he will leave the uterus in, but take both ovaries.

I am so sorry you have had this happen. My thoughts are with you.

I had a hysterectomy a year ago December. My surgeon wanted to do it laparoscopically. I told him over and over again my colorectal surgeon had said I had many adhesions and laprascopic surgery probably wouldn't work. He tried but ended up having to open me up....using same scar line used for my colectomy. I was thrilled with the results. This was a far easier surgery for me than the colectomy was.

It is interesting to read this, as I may need a hysterectomy, as I have multiple fibroids that continue to grow, and my uterus is the size of someone who is 4 months pregnant. I am nearly 48 but no signs of menopause yet, and my uterus is increasingly painful. I also have ovarian cysts. In addition to the colectomy/takedown/incisional hernia surgeries I had in 2011 and 2012, I have had 2 previous abdominal surgeries because of ovarian and dermoid cysts. So...I am nervous about hysterectomy and trying to avoid more major surgery so soon. My GI said I would need to have it back where I had my J-pouch surgery, in case there are complications, adhesions, etc. I've also had problem with ileus during the last two surgeries, so that is a concern as well.
I should probably avoid hysterectomy at all cost?!

Laurie

Ihh65,
I believe in 'no absolutes'...if you need the surgery than it is a moot point...you must have it done...it is the circumstances of the surgery that you need to make sure of (as much as it is possible)...like where you have it done and who is doing it as well as making sure that your pouch surgeon is eithe present or nearby and on call if needed...I've had non pouch related abdominal surgeries and the one major point has always been that the surgeon have a perfect knowledge of my pouch and an emergency 'what if...' list.
Other than that...surgery is still surgery and full of inherent risks...
Sharon

Ihh5, Please don't try to avoid the surgeries as that's what I did. The fibroids keep growing making the eventually surgery worse. I had mine when my uterus was the size of a 6 month pregnancy, they were afraid I was going to bleed to dealth. This was before my j-pouch and was done open. When they took out my colon I had the doctor remove my ovaries too. They told me they were pretty gnarly looking and one had an ugly cyst.

Mo,
I'm so sorry this turned out so bad for you and hope you are over the worst of it now.

Thank you for the encouragement. I realize more surgery is likely inevitable, unless I hit menopause very soon (not likely). The type of fibroids I have are in the wall of the uterus, and I hadn't actually noticed excessive bleeding until this month. I am also very anemic and am in the middle of a course of iron infusions, though I don't think it's because of the fibroids. I do worry, though, that the size of my uterus is causing pressure on my J-pouch and certainly increased pain.
I am due to go back in early June for another ultrasound to check fibroid size and re-assess where we are. My gyno also mentioned that while it's very rare with fibroids, there is always possibility of malignancy. I'm not really worried about that...but still.
The thing is that I was never able to get pregnant either (my two children are adopted), so these organs have only caused problems, and because of my long history of cysts and never being pregnant, I do actually worry about ovarian cancer.
Anyway, I'll post after I go back to my gyno.

Thanks again,
Laurie

Laurie,
It sounds like you will probably end up with the surgery and I can't remember your age but back in my day they took the ovaries if you were 45 or over. I was 40 so they left mine. That was so they wouldn't throw me into menopause and that's why I had them take them with my colon, as I was past menopause. The only thing they could give me anymore was cancer. No need for redundant parts. I hope you are feeling better soon and let us know how you do.

So scary to read this. I am def. going to get my husband to read and hopefully he will now take it serious. If something else were to happen to me besides my pouch I do not have an experienced doctor. yrs ago when having a test done to see why I was not getting pregnant/checking for scar tissue from colon sugery/pouch I called my pouch dr. to let him know this was being done and was there anything I needed to know. he said they are not to open you up unless I am there. dr. even called/told my husband this. well hello, I sent the surgeon/not original one that did pouch a thank you note for being there. when getting my records later I found out he was never there due to an emergency surgery. now of course I understand that but the ob was not suppose to open me up w/out him there and he did. I was in lala land so how in the world was I suppose to have control over it/my husband didn't take it serious and so shy he wouldn't of done anything about it if dr. had told him he was going to open me up anyway. I better quit typing this I am getting angry all over again and this was 10 plus yrs. ago.

Hi Ladies,
I'm sorry I have not been back on, but I have been busy recovering still. Four months out and I'm still having pain, although no one seems to know what it is from. Pain under ribs, a lump on my right side abdomen, back pain and it's worse at night. I am going to see a GI doc today.

If you need a hysterectomy, please, please have it at the hospital where your colorectal surgeon is located. I DID call mine and asked him about having the hysterectomy, and he said as long as they are aware I have the pouch! Plus, it was not my GYN who did the surgery, HE referred me to a Gyn Oncologist because I WAS high risk!

Just be very careful! I'm sorry to scare you all, I was just very upset!

Good luck to you all.

UC - DX 1997
Total Proctocolectomy and j pouch surgery 1997/1998
Recto vaginal fistual repair 2x - 2000
Tubal Ligation - 2000
IVF
C-section - 2005
Robotic hysterectomy 1/2013
Small bowel resection 2/2013

Mo, I rarely feel like hitting people but I want to slap your C/R and GYN surgeons both silly. What the hell were they thinking? I guess that won't help you now.

I had my uterous out before my surgeries and ovaries out with my colon. My C/R surgeon mentioned the adhesions from my hysterectomy during my first surgery. I also had an incisional hernia operation after my take down. Now I am told that my mysterious pains must be from adhesions from all the surgeries.

I have no pain under my ribs but do have kind of a lump on my right side under my stoma site. It does bother me at times and I assume it is adhesion pain as well.

I've been through a small bowel series. You drink that awful barium and they take X-rays of it as it progresses through your intestines and j-pouch. It shows up like concrete on the X-rays and it was clear to see that I had nothing obstructing my intestines in any way. Therefore they did not care about the pain too much. I have pain medication but they don't want to do surgery to deal with the adhesions as the surgery it's self will cause adhesions and the adhesions can regrow inside. Also there is not a test that can show the adhesions, like a CTscan or MRI.

I hope they can do something that will get rid of your pain and you are feeling better soon.

I forgot, it may be your gallbladder or something like that - but you'd think they'd know that by now.

Mo,

I am just reading this thread and am SO sorry for what has been going on. I agree with TE-we should slap your doctors.

Whenever I have had ovarian cysts removed, my GI surgeon insists on being there and she works with my high risk OB surgeon. I cannot IMAGINE why yours didn't do the same?

I hope they can find the source of your pain ASAP.

I am truly sorry this has happened to you.

I wish you better (MUCH better) days ahead.

~Tammy

My colorectal surgeon assisted in my hysterectomy. That is one of the pluses of going to a hospital like the Cleveland Clinic, where all of the doctors work together.

Hi ladies
I keep forgetting my password! Anyway, here is an update. My ileostomy reversal surgery was cancelled because I'm still in pain. CT scan showed a 5.2 cm abdominal cyst. Do t know where since j have no ovaries. It did not show on ultrasound. The tech said she just thought it was too deep behind too much stuff. CR surgeon to review everything and call me tomorrow with plan. He mentioned aspirating cyst. Do you think this can be done at same tone as reversal?

Also they did endoscopy which showed mild gastritis, esophagitis, hiatal hernia. This was all done by a local GI guy who finally listened to me!

Mo

Oh, and my CR surgeon is located at Jefferson university. I've always liked him and I wish I had my hysterectomy there instead of the other hospital.