Have to have Pelvic Exenteration

• By Jodi_ayn
• Posted June 22, 2009 at 7:07 pm
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You found me! Ask me anything! Don't feel too isolated...there are a few of us out there.
Jodi

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• By flowershoplady
• Posted June 22, 2009 at 7:31 pm
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julie, i'm really sorry you're going through this, and how great that jodi_ayn has already posted a response. it's great that you'll be able to connect with someone who truly knows what you're going through, and the surgery you'll be facing. there are several women on this message board who have had this surgery, and there are a few on the hystersisters.com site as well (in the cancer forum). best wishes to you.

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• By julie445
• Posted June 22, 2009 at 7:31 pm
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Thank you for responding so quickly. Reality has started to set in since the plastic surgeons office called today to schedule my consult with him.

This ordeal started when I was 38 and I just turned 40.

If you don't mind me asking the questions I have.
1.What was it like first waking up from surgery?
2. How would you describe the pain? And was it controlled well?
3.Did your diet have to change?(I will more than likely wake up with 2 bags, the colostomy may be temporary, but won't know for sure until the dr. gets in there).

For some reason, I am not concerned about bags, I think living is more important. My fear is all the pain and what type of pain it is/how bad it is/how well it is controlled/and when it starts to get better.

Right now I am having some lower back pain and minor hip pain, but I had an exam under anesthesia 2 weeks ago and the doctor said that I am still sore because he was thorough, also had proctoscopy and cytoscopy. Luckily only that same spot came back and is the only thing that lights up on the PET/CT scan. After the EUA I was in extreme pain, never used narcotics before but did this time. But each day that pain has gotten MUCH better and improved.

Thank you so much for your willingness to share your experience. It means so much, and sure helps because a doctor and his staff can only provide so much info. but a survivor can provide more accurate info as to how the recovery actually goes, plus it gives hope to be in contact with a survivor.

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• By queenofrubys2003
• Posted June 23, 2009 at 12:29 am
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Hi Julie,

It's been about 26 months since my Pelvic Exeneration and I am still here loving life. If you would like to talk, please send me a private message...if not, let me know and I would be happy to post as many details needed to answer your questions. Sharing my story has helped me during my recovery. Looking back, my decision would have not changed. I am here still living and making the most out of life.

Keeping you in my thoughts,
Deanna

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• By julie445
• Posted June 23, 2009 at 10:52 am
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Thank you Queenofrubys2003. I sent you a request to add as a friend so I could message you. I would love to talk, I think that would help set my mind at ease.

I do better when I get the details of everything, and I think it would be more beneficial mentally to get info. from patients who have been through this. I really do appreciate the support from others.

I was told not to be surprised to wake up with 2 bags. I can live with that because I will be alive to be with my two boys.

I will have a urostomy for sure. The doctor doesn't want to start off with it being continent because he said the risks for infections is high from his experience and it is best to start off with a urostomy and if I can go 18-24 months he will consider making it continent. And if I wake up with a colostomy, that may only be temporary for about 6 months or it may be permenant.

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• By Amaryllis2
• Posted June 23, 2009 at 8:31 pm
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Julie - I also have to consider having this procedure after the chemotherapy shrinks several tumors (I have already had a radical hysterectomy and radiation), and I would very much like to know what you find out about it - I have the same questions that you do. Please post, or contact me directly. Thank you.

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• By queenofrubys2003
• Posted June 25, 2009 at 12:39 am
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Hi Julie,

Well, what your doctor is telling you is correct for the most part. I'm not quite sure of where to start, but it here goes. My surgery was 14 hours long performed by 4 doctors at M.D. Anderson/St. Lukes in Houston. I woke up in ICU and was there for 8 days and was then moved to a private room for another 10 days. I had a complete exenteration, removal of the vagina, rectum, anus, bladder, and appendix. My vagina was reconstructed with a stomach muscle, I have a colostomy and a Indiana Pouch (Urinary Continent) that is made from part of my colon.
I wear a colostomy bag on the left side and self-cath on the right side of my stomach. Reading this is probably going to be very overwhelming and I do apologize if I become to graphic.

When I left the hospital my colostomy was working and I was wearing a bag. My Urinary Diversion was not. I had several abdominal drainage tubes and had special small like tubes that were connected to my kidneys that drained into a bag. After a couple of weeks they removed the abdominal tubes. I then had a pouch-a-gram to check for leaks before they removed the tubes from my kidneys. As soon as they were removed, I immediately started self-cathing.

The first year I was in the hospital on and off due to UTI and kidney infections which were to be expected. Getting around was not too hard, I had a scooter for when I started making outings. My biggest challenge was being able to stand for long periods and walking long distance. It gets better, but I am still challenged in this area.

This past year has been much better. Although, I am not working, nor do I see it happening anytime soon, I have recently enrolled in college to start reconnecting with the world. It has been the best thing I could have ever done. Before my surgery I was a very successful Store Manager for a major womens retailer. I am no longer physically able to perform that job...and it's really ok with me. Going to college has given me new goals and plans for the future.

Depending on my schedule, I sometimes irrigate my colostomy which allows me not to wear a bag, but a stoma cap(big bandaid type bandage) especially during the summer when I want to go swimming. Finding the right bag/supplies is very important. It will make your life much easier.

The last two years I've had ups and downs, but have never looked back. When my doctor told me that my cancer was back and this surgery would give me a chance to survive, I didn't hesitate...and my surgery was performed two weeks later. The support that I had/have from my husband, mother, family and friends is what got me to this point. I won't lie and say it's easy but it's what you make of it. When you leave home, you have to be prepared at all times with a supply bag...That is one little thing that will make life easier. There is so much more to tell. I went to the New Orleans Jazz & Heritage Festival this year with my husband...and also went to Disney World.

Life does continue... I look forward to hearing from you.

Deanna

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• By queenofrubys2003
• Posted June 25, 2009 at 12:40 am
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P.S. My colostomy and urinary diversion are permanent.

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• By julie445
• Posted June 25, 2009 at 4:11 am
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Thank you. How was it when you woke up fro anesthesia? Was it like previous times when you have had surgery? Not sure why I have that question, or why I think it would be different. You stayed in ICU for 8 days, did you have complications?

I will also have a urostomy (not continent-could be later on) and colostomy.

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• By queenofrubys2003
• Posted June 25, 2009 at 1:04 pm
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Waking up was somewhat like other surgeries... I remember bits and pieces of the first week due to medications. I do remember being in a special inflatable bed that rotated to help move me and provide comfort because I wasn't able to move myself. Because of the reconstruction of this surgery you have to expect some mobility challenges at first. They did leave my central line in until right before I left the hospital. Do you have family/friends that will be with you during your hospital stay? Please ask any questions... Keep me posted.

Deanna

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• By julie445
• Posted June 25, 2009 at 3:21 pm
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Thanks. I'm hoping that you were not in excrutiating pain, I hope that I am not in that kind of pain. The dr. said I would have a PCA. I can remember last year when I was in for internal brachytherapy and woke up in excruciating pain, turned out my catheter had a kink in it and I was retaining every ounce of fluid that had been given to me since the morning of the surgery, then the pain just took hold, once it's there it is hard to get under control.

I'm wondering if you had the connections in the kidneys because you had a continent bladder, I know my doctor said I wouldn't have a continent bladder, so I will ask him if I will have those extra drainages.

I'm glad to hear that waking up is similar to waking up from other surgeries.

I will have family with me. I'm sure I will have more questions, I really do appreciate the time you are taking to answer them.

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• By Jodi_ayn
• Posted July 2, 2009 at 10:01 am
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Deanna, you and I have very similar stories! My surgery was the same! I went to MD Anderson for a 2nd opinion but ended up having surgery in ABQ so I could be close to home and my support network. Having friends and family around was key to my recovery!

Julie, on 3/6/08 I was in surgery for 13 hours with 4 surgeons (urologist, plastic surgeon, and 2 gyn oncs), in ICU for 24 hours, private room on acute care floor for 10 days. I have no memory of the 1st 3 days! I had an epidural for a couple days after the surgery but was in severe pain from what I remember. My friends & family kept a journal of my care and one of them was by my side for every second of every day during my whole hospital stay. I'm so thankful for that! In the journal it says my pain level was at a 10 (on a scale of 1 - 10) for a few days, but I don't remember that part.

I have a colostomy and a continent Indiana pouch too! And my new vagina was made out of abdominal muscle and tissue. I have had a lot of kidney infections, as well. We've been dealing with scar tissue blocking a ureter since 1/7/09. I've had a lot of procedures and a couple surgeries this year to try and open it up, but nothing is working. So now I'm probably going to lose that kidney. It's been a rough year, and it's not looking like it's getting any better!

I'm 20 pounds lighter than before I had surgery, and it's still hard for me to keep weight on. I do eat a lot healthier now though and hope to keep HPV at bay by having a healthier immune system. With a colostomy, I have given up eating anything that causes gas, since I no longer have the ability to keep it coming out on its own! So that means no broccoli, cauliflower, cabbage, or carbonated drinks. Also, I don't eat things like popcorn, corn or nuts because it increases the risk of blockage due to those things not being completely digested. I have also given up eating meat because of the link between animal protein, animal fats and cancer.

All that being said, I would have the surgery again in a heartbeat! I would be gone by now if I hadn't had the surgery. Now I am still here with my 3 kids and my family. You really can do anything you set your mind to. It's horrible and hard and it changes your body forever, but you still have life!

My prayers are with you as you approach your date. I'm also willing to answer any questions! Ask away.
Jodi

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• By julie445
• Posted July 2, 2009 at 12:41 pm
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I met with the plastic surgeon today. They are going to reconstruct my vagina with abdominal muscle, he said I am small so he may have to use some of the inner thigh.

I did request an epidural, hoping I get it. I also told them what pain meds I do well with and also that I needed the anti-nausea patch they put under my left ear. They said they could give me my requests. Not sure about the epidural yet. They said they would keep my pain under control. I hope that is true. I just know that I had an awful experience with my internal rad treatment.

It sounds like both of you left with continent urinary diversions. I won't. My gyno/onco said he doesn't like to do those because of the risk for increased infections. He said it would be possible to turn it into a continent diversion if I do well with infections for 18 to 24 months.

I'm starting to worry that something is wrong with me because I haven't freaked out yet over this major surgery. I know the major changes it will body to my (I am prepared and have come to terms with that). Not sure why I am not losing it but remaining calm. I'm also a nurse and have worked with patients with stomas, so I am prepared for what they look like.

Jodi, how was your pain when you were discharged? Was your pain all over? Or mainly in the incision area/pelvic area?

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• By julie445
• Posted July 2, 2009 at 12:46 pm
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Jodi, forgot to ask, how long was it before you could walk? And if you took pain meds did it help with the walking?

You also mention weight loss. I am a small person and currently weigh 113 lbs, I don't want to lose alot of weight, I already expressed this concern to my doctors, lucky for me I love Ensure I guess. But the plastic surgeon and gyno/onco said my size makes their job easier. Don't know if that is true or not.

They've already been warned how I get and are ready for the sedatives in pre-op! LOL.

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• By Jodi_ayn
• Posted July 3, 2009 at 11:52 am
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Julie,

Yes, there is still pain when you leave the hospital. I think it was about 3 months or so before I was about 75% back to normal. I got up to about 85%....but it never got much better than that. I have had frequent infections, so maybe your doctors are on the right track. The only problem with that is that it's really hard to wrap my brain around another surgery at this point. I can't imagine going through that again...it's so huge. And now I have a bunch of scar tissue from surgery and radiation.

I started getting up in the hospital after a few days and I was walking the halls with a walker before I went home. My master bedroom is upstairs and I was determined to sleep in my own bed and use my own bathroom, so I was going up and down the stairs, but only once or twice a day. I walk fine now, but it was slow at first.

I hate to say it, but I am never completely pain free! I don't know if Deanna is...I would actually like to know that...but I'm always somewhat uncomfortable. I have a 2 year old (adopted) and it hurts for him to sit on my lap because he elbows me in the gut invariably hitting my abdominal scar or one of my stomas. Also, when the nerve endings are reconnecting, you get zingers that have a distinct way of getting your attention! I had a hysterectomy before, so I was aware of that, but not like these that I can sometimes feel in my feet.

Do not fear the pain! Yes it hurts...but you can get through that. Have you ever pushed through the pain in an extreme workout? Or having a baby? Or running? It's all very mental and you can get through it. My mantra was, "This too shall pass." And the majority of it really does. What I deal with now is manageable and it's amazing what you can live with when you set your mind to it. I actually have to remind my husband that I'm completely wiped out because I vacuumed the floor because I try to keep being the same person I was before.

I love the idea of the anti-nausea patch....wish I'd thought of that! I never puked (thankfully) until my first infection 3 weeks later, but that would not have been fun.

I was on vicoden for probably 2 months after surgery. I hate taking pills and I hated feeling out of it and tired, so I basically just quit taking them. I still had some for every now and then....like vacuuming days! But I never use them any more.

I am 5'6" and before surgery I weighed 145, now I'm 125. I look skinny and I really don't like it, even though I always wanted to be skinny! Now I feel like since it happened because of having cancer, that I'm just cancer skinny! You will lose weight. But it's a good thing you like ensure. I think it was a good 5 days before I ate anything and even then it was just a sip of boost or ensure for each meal....seriously, one sip! But you don't really feel like eating and you're getting IV nutrition, so I guess it's okay. You have to let your intestines heal before you start making them work again, I guess.

I really wanted to get out of the hospital. I was so tired of being there after 10 days. So the doctor told me that I had to be able to walk the hall, be off IV pain meds, and eat. So I just worked on those goals and within a couple days I was able to go home. 3 weeks later, I got a fever of 105 and was practically refusing to go back. My husband finally called an ambulance and I had another 6 days in the hospital because of a kidney infection. I know at that point I was still on vicoden and in pain because it hurt to puke. Also, I couldn't hold down the pills so they brought me liquid vicoden from pediatrics. Every time I have an infection (I think I've had about 5 - 7) I lose weight. So I try to gain weight when I'm feeling good. I think with the colostomy, that makes it harder to absorb the nutrients.

Okay, now I feel like I've been rambling on. I remember before my surgery I was addicted to reading everything I could online and I just waiting with baited breathe for any response from someone who could tell me what to expect. So I'm trying to tell you as much as I can....and I hope it's not too much! I do recommend you having someone in the hospital with you at all times, a friend or family member, because the nurses (I probably don't have to tell you this) can not be with you at all times. You have IVs on both sides and you feel tied to the bed. You can't even get a blanket if you get cold. I am so thankful for all the people who took a shift with me in the hospital.

You can do this! It is another chance at life!
Jodi

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• By julie445
• Posted July 3, 2009 at 12:59 pm
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Where was the majority of your pain located? And did the pain meds help control it? I hope you are not in chronic pain.

It seems I have never ending questions. One I think I forgot was, how long was it before you were able to drive or make trips outside the house.

I an a single mother, but I will have somebody staying with me and helping when I get home from the hospital.

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• By Bymyside247
• Posted July 3, 2009 at 1:49 pm
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Julie445: I have been following your post, not giving advice because I have not walked in your shoes. I wanted to say though, that I don't think that anything is wrong with you for not freaking out :o) I was amazed at your post and how you are dealing with things. Matter of fact, I am amazed at all the ladies who have responded to you. In my belief, God has provided you fabulous coping needs!

I was reading lastnight and came across something that I really think may benefit ladies whom are going through or have been through what you are about to go through. When I read it I thought of you and how I must have stumbled upon this so that I could share it here. Anyhow, the link is below :o)

http://images.google.com/imgres?imgurl=http://www.canceractive.com/images/c arol_jones_lisa.jpg&imgrefurl=http://www.canceractive.com/page.php%3Fn%3D10 39&usg=__z6zNWAO9Xta9ovC7jA8RTWmzNTk=&h=200&w=200&sz=17&hl=en&start=3&um=1& tbnid=7c6-u5XbGYzeIM:&tbnh=104&tbnw=104&prev=/images%3Fq%3Dwhat%2Bwill%2BI% 2Blook%2Blike%2Bafter%2Ba%2Bvulvectomy%26hl%3Den%26rls%3Dcom.microsoft:en-u s:IE-SearchBox%26rlz%3D1I7ADBS_en%26sa%3DN%26um%3D1

OH MY LORD that is a HUGE link!!!! lol!!!!

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• By Jodi_ayn
• Posted July 4, 2009 at 11:12 am
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That's a great link Bymyside. I hung on every word! I had (have) a lot of the same emotions as her. Thanks for sharing that!

Julie - I would say I had the most pain in the abdominal area. Although I do remember having one night where my whole body hurt so much that I had to get my husband to move my legs for me. You don't realize how much you use your abdominal muscles until it hurts when you do! When I woke up from surgery, there was a inflated dilator inserted vaginally that literally stayed there for a month or so...I don't really remember. But it holds everything in place while it's healing. It was sticking out a good couple inches so it hurt to sit. I got one of those Boppie pillows to sit on and it saved me! Definitely get one! And take your own pillows to the hospital so you can prop yourself up and get comfy.

I had someone staying with me (lots of different people came and went) for 4 months total. They helped take care of the household and getting the kids where they needed to be and especially taking care of the 2 year old. Actually he was only 15 months when I had surgery. I think I started driving after 2 or 3 months. My doctor was pretty nervous for me to drive, but I think it was because I was so fragile at the time! And not because of medications. My first trip outside the house was 2 weeks after being dismissed from the hospital. The only reason I left the house was because I had a post op appointment! I took my Boppie with me to even just sit in the waiting room and the car! I was slow and careful and definitely taking vicoden...but not so much that I was out of it. I had someone with me and they dropped me right at the door. But I wasn't going grocery shopping or to any kids' events for a while.

The pains that I have now come and go, depending on what I'm doing. But it's all manageable. I'm a stay at home mom, so during the school year, I'm able to nap when the baby naps! That has been very necessary for me to recharge. I don't like taking pain meds, so I generally don't. At this point, I may use ibuprofen or tylenol if I need it....for instance, sitting at my son's 2 hour baseball game on metal bleachers (even with a bleacher chair) requires ibuprofen! But I don't want to miss out, so sometimes I get up and walk around during the game.

I found that everyone around me really wanted to help. Everyone says, "Let me know if there is anything I can do." And then we don't know how to ask specifically for what we need. But my sis-in-law and mother-in-law weren't afraid to ask. They set up meal schedules and hospital sitting schedules and drive to appointment schedules for weeks...I think it was a good couple months. I found it to be so nice that someone else was asking for help....and everyone was so willing and eager to help. The people close to you want to help you out and they're not sure where to start. So please do delegate someone to ask for you or get on the phone and set it up, if you haven't already. I didn't realize you were a single mom. That is going to add an extra challenge for you! I wish I was closer and I would help, too!!!

Jodi

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• By flowershoplady
• Posted July 4, 2009 at 12:16 pm
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julie, i'm not sure of the date of your surgery, and wanted to send positive thoughts and wishes your way.

also, there is a woman on the hystersisters.com site, in the cancer forum, with a name/id of ialwaysworry that is about to have a pelvic exeneration too....for vaginal cancer. perhaps you can connect with her, someone going through the same thing, at the same time. and, of course, it's wonderful that this forum allowed you to hear from other women who have been through what you're about to experience.

and, as jodi posted, ask for help from others...specifically. people want to help, but unless you tell them what to do, they don't know what's needed. and if you need garbage dumped, linens changed, or whatever, they'll help you! it not easy to be sick and single, and particularly a single mother, so please reach out. i bet if anyone here lives nearby you, they'd help as well.

when you get a chance to be near the computer, please let us know how you're doing.

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• By julie445
• Posted July 4, 2009 at 7:21 pm
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Thank you so much. I plan on taking my lap top with me. Although I don't know how realistica it will be that I will be able to use it. But should I feel good enough, I will definately post an update.

Jodi--where do you buy one of those pillows? I will surely get one. And thanks for the heads up on the vaginal dilator! Nobody mentioned that to me.

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