FtM (trans guy) seeking experiences with hysterectomy after life with a pouch for familial polyposis

Hi All. I'm reaching out because I am going to undergo an elective hysterectomy soon as part of my gender confirmation surgery/transition. I am on testosterone 11 years and previously in 2001 had a one stage sub total colectomy with an isa (ileal sigmoid anastomosis) for familial polyposis at age 23, 17 years ago) I have a pouch attached at the sigmoid colon junction And I have my original rectum all 6 to 10 inches of it.

My questions or concerns are for someone who defacates as I do 10 or more times a day regardless of method of hysterectomy lapro, open or through the front should I ask if I'll also in addition to urinary catch have a indwelling rectal Foley at wake up after surgery? I'm worried I won't be able to get up to poop or poop myself during surgery. Also what are other people's experiences who are morbidly obese with Lapro hystos versus open if you were heavier because I am 230 and 5'7".  

 

I'm looking for feedback from anyone who had a hysto post pouch and I understand a sigmoid anastomosis with a pouch and full rectum isn't the normal outcome after familial polyposis surgery.

 

Thanks for all feedback, support and/or insight. 

 

Len

Original Post

Also the surgeon I'm using will have a colorectal surgeon on standby invade of complications.  And I'm hoping it's lapro but not sure, 17 years ago my colectomy at 180lbs back then was lapropscopic and now I don't know if I've made or acquired adhesion since that many years ago. My biggest fear is pooping without control at wake up and my bowel being accidently nicked less likely to happen if done open vs laproscopically.

 

 

I find it appalling that as a fellow jpoucher with a difficult past none of the female bodied individuals will answer my post or at the very least PM me there hysto experiences. 

 

It's a shame I feel.  I have an different history and can't get any feedback. Do we have to be that shallow now? 

Let 

Hi Len - It looks like you have been through a lot.  I respect your toughness.  I don’t have a ton of experience on the topic, but logically, I would explain to the surgeon your concern about bowel control post surgery.  If it were me, I would play it by ear post surgery.  If bowel control became a mess, I would ask for the Foley - but my bet is that it is not super comfortable.  If you mess the bed a bunch - you can ask for the Foley.  The surgeon and nurses will have an opinion.  Also - try not to worry about soiling the bed - I can see it may be embarrassing, but you will be in a hospital and they have seen it all.  Whatever you do, go into the surgery with all of your questions answered so your head is clear.  I would hope for a lapro also - the recovery is easier.  I am 5’8 275 - big - they are planning a lapro for my JPouch surgery - which is in a few months.  I am terrified, but I have been really sick with Crohn’s for 24 years.  Never a well year.  The doc told me to lose 40 pounds - so far I have gained 2.  Best Doug 

You probably didn't get any comments because you said " 'm looking for feedback from anyone who had a hysto post pouch" so you already limited your scope of potential replies there. I hope everything works out for you. You deserve to be happy.

Hey there,

I’ve had a pouch for 20 years and 2 years ago I had a radical hysterectomy because I had ovarian cancer. My surgery was done robotically with the da Vinci robot. My colorectal surgeon was on standby just in case, but it all went well. For some reason my pouch is much, much happier since I had the hysterectomy. 

After the hysterectomy they want you up and walking as soon as possible. If anything, after surgery, the drugs to put you to sleep and the painkillers make you constipated. Definitely no pooping in the bed. 

Our situations are different. I’m tiny. I had colitis, not FAP, etc etc. But feel free to ask me anything. 

C-jay

doug, 

 

thanks for your kind reply.

 

cjb,

thanks and sorry you had cancer. as time wears on my risk goes up as well. im glad to hear pouch function might improve post hysto. my jpouch is attached to my rectum which was not surgically altered in 2001 when i had my colectomy. i have  my sigmoid colon intact, hence a sub total colectomy with ileo sigmoid anastomosis.

anyway, yeah im on the large frame side, being as i said im 5 feet 7 and 230 lbs. so i dont know if he can operate or is willing to robotically. my g..i said he hopes i dont need to be abdominally opened up.

so i wont have a fecal foly cath at wake up post hysto right after or i will be constipated so pooping wont be an issue?  also of note i have a 4.9 x 4.0 right ovarian cyst, partically complex per my urologists words on cat scan which may have also partically ruptured.  

im looking to have the surgery for a variety of reasons not just as part of dysphoria and/or medical transition.

 

thanks!

len

Len, I can’t guarantee what will happen to you, but I’ve had 4 surgeries so far since I had my j-pouch and never once did I even come close to pooping the bed. I had an ovary removed 10 years ago laparoscopically. And then as i said I had a radical hysterectomy 2 years ago because of stage 3 ovarian cancer. I also had to have some abdominal lymph nodes removed a year ago because they saw a small reoccurrence of my cancer but it was contained so they only did surgery. Thankfully no need for chemo. Chemo is nasty and very hard. 

Never once did a surgeon even touch my pouch. I have ALOT of scar tissue inside. I am told that every time they open me up. Sometimes they clean it up a bit, but I have to say, if they didn’t tell me about it, I wouldn’t really know it was there. Every surgery I had to prepare my self for open surgery because you just never know what obstacles they might come across. But ive been super lucky, or have amazing surgical oncologists.

I think girls have a harder time with a pouch as we already have so many organs down in that area.

im super sleepy right now, but don’t be shy to ask me anything . When are you having this surgery? And what kind of doctor performs it. I hope you’ve heard how easy of  a surgerythis is for most people . I know we’re not ‘most people’ but still, it is a relatively routine surgery these days. Are you having radical or total hysterectomy? speak again Soon, C-jay

 

Len,

Just wanted to chime in that it is highly unlikely you will have a rectal tube post-op. You will be pretty empty and anesthesia slows the gut. I have not had a hysterectomy (yet), but have had other surgeries, and it is a non issue. Also, since you retain your sigmoid and rectum, you have much more holding capacity than most of us.

As to the delayed response, try not to take it personal. I don’t think anyone is being judgmental. You asked very specific questions that not many of us could answer. By the way, if you do a search, there are a number of threads that discuss hysterectomy post colectomy. Most of them are in the Women’s Health Forum.

Hope your surgery goes well!

Jan

hi everyone, jan, c-jay....

i will report back after i see the surgeon who is an obgyn and oncologist. my appt at jefferson hospital in phila is on november 29th.  

thanks for the responses.

-len

 

p.s. since i didnt meet with the surgeon yet i don't know how the surgery will be carried out or what i'm a candidate for and not.

 

met with my surgeon who will perform the total hysto. dont have a tenative date yet, just met for consult with surgeon on nov 29th. very nice man, doctor, and knowledgable and straight forward.  bottom line i need the surgery from an fap standpoint (cancer risk) and gender transition surgery standpoint!

 

we, my mom and are are very pleased and the surgeon kissed my mom and hugged me and stated he only wants the best for me, and will carry things out as if he is doing surgery on his brother!

i signed for surgery just waiting for them to call me with a date. in the mean time g.i doc wants a colonoscopy should my da vinci robotic lapro surgery turn into an open one once he gets in there due to the jpouch/sub total colectomy issue.

i asked my questions and he said he does not expect a foley to be in place at wake up if the op will be carried out via the da vinci method, robotically. and should it be open versus robotically when he gets in there then 4-6 week recovery, otherwise he said an over night stay in the hospital baring no complications and a 1 1/2 to 2 hour operation.  and operating on  a 230 ounder is a non issue, he has cis-woman comming in with cancer and some of them are 300+ lbs and he has operated on 5000 pounders. 

so bottom line im in good hands. now to have the colonoscopy on dec 18th tuesday as routine surviellence and then get a date for hysterectomy!

 

--Len

 

5000 lbs, I was hoping that was a typo!

you sound like you’re in great hands.  The da Vinci robot operated on me twice. Once for my hysterectomy after my cancer diagnosis 2 years ago. And then again a year later when I had a reoccurrence in a pelvic lymph node. The first surgery was tough, but I was in the middle of chemo so everything was tough at that point. But still I was only in the hospital for about 2, maybe 3 nights. With the 2nd da Vinci surgery I went home the next day. For sure you’ll feel kinda sore and awful and crappy but it only takes a few days to start to feel much, much better. 

It’s so reassuring when the colorectal surgeon is aware and available in case they are needed. My oncologist told me that my colorectal surgeon called into the operating room just to check in and she told her that everything was going fine and that she was no where near my pouch. I hope you have the same great outcome. 

Its crazy how much we can put our body through and still heal. Be patient and be kind to yourself. Write me anytime.

c-jay

Hi c Jay,

 

Glad to hear from you. Yes Dr Richards is very warm. I sensed that right away. I'm looking forward to being rid of parts I have no need for and never felt they were a part of me its like I was dis associated from them from the moment of realizing I was trapped in the wrong body and that I needed to take the appropriate steps and fix or align myself so that I can live etc.

 

Thankfully Dr Richards works with insurance and  I do have a cyst measuring 4.9 by 4.0 which is in an if itself abnormal I'm hoping it won't bleed further during my hysto. But I had a blood transfusion before from a g.i bleed two years ago so I'm prepared should I require blood.

I appreciate you being there and sharing with me. Thank you

I'll post my surgery date.the surgery scheduler should be phoning me first week in December.

Len

 

 

 

 

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