Question for anyone who has had bowel surgery

[bcipam]

On a previous thread I discussed some ongoing intestinal issues. Today I had a colonscopy and it was discovered that I have a large mass in my colon. The mass has been causing the bleeding and elimination discomfort. I have several tests scheduled and then I'm going to have surgery. I spoke with the surgeon briefly and he is planning on excising the mass plus some bowel, sewing the bowel back together. He mentioned I will probably be off work for 2 - 3 weeks which sucks but I'm also assuming that means off my bike for an even longer period of time. I will be meeting with the surgeon on Thursday to further discuss the surgery but has anyone out there had similar surgery and if so, how long was your recovery etc. This whole thing has me very depressed right now. I really dislike surgery and definitely any hospital stay. I am so hoping this is an out-patient procedure. I rather be miserable at home but then I start thinking about how is it going to be to use the restroom etc. God please, no bed pans, Please! Questions, questions... OK I'm freaked out!

[DeniseGoldberg]

Hey BCIpam -
I can't help with the colon surgery question - but I wanted to let you know that I'm sending wishes your way for good results, comfort, and fast healing.

--- Denise

[Squirrel 2]

Hi Pam -- please don't be scared, a positive attitude is so important for healing. I don't know the answers to your questions, but I bet the surgeon's nurse knows. Sometimes the surgeon is hard to get hold of, they're awfully busy, and sometimes they minimize pain & recovery issues so as not to get the patient upset.

My husband had very serious surgery a couple of years ago. I could never get any satisfactory answers out of the surgeon, his responses always seemed rather vague, but I could call up his nurse & ask her very direct questions & I would get very direct answers. The nurse has had a lot of experience, I would draw on this to get some peace of mind.

Best wishes as you go forward on this one.

[Trek420]

Bcipam, sending wishes your way for healing.

As my Sister Duck on Wheels has shared here she has colitis, very severe case of it. And she rides, puhrty darn well I might add. She did the majority of the epic-brutal-Cinderella ride on a comfort bike.

With her new bike "ruby slippers" who knows what she could do.

She has not let it hold her back though I know it's a challenge, I know you will do well too.

[Aggie_Ama]

Bcipam- My father has colon cancer and had a large mass removed in March. They were able to do it labrascopically (sp?) and he healed much quicker. I believe he was in the hospital 3 days and then was doing pretty good the next week. Everything is a blur, but I believe he was able to lift over 10 lbs within one months time. Maybe sooner. He was out of work for 6 weeks because his work requires he frequently lift 50 lbs or more. He had a ton of sick leave, so he took it.

They were also able to give him this great pain remedy. He left the hospital with small IVs going straight into the colon area and giving it pain medicine. This was so much easier than swallowing pain medicines. The pain medicine was a little ball in a small bag, when the ball ran out he just pulled the tiny needles out himself. This sounds terrible, but he said it didn't hurt one bit and it was great to sleep through the night without worrying about the meds wearing off.

I would see if they are planning to do the surgery labrascopically or if this is an option. It seems to make the healing time much easier and the scars (if that matters) are much smaller. Best wishes to you!

[bcipam]

Aggie - thanks for the info. Of course its not really what I want to hear. I absolutely dread any hospital stay. It's the worse part of all this for me. A friend of mine also had this done last year and I think she had a 3 day stay as well. If there's anyway I can go home after, I'm pushing for it.

I'm never worried about pain. After my collarbone surgery I was given pain medication, but never took it. But this might be worse. Anyway thanks everyone for all your well wishes - much appreciated. Can't believe another Fall Season (my favorite - I tolerate Summer to get to Fall) and it looks like no riding for awhile. Bummer!!!!!

[Bruno28]

Hi Bicam

Sending you good wishes for a speedy recovery.

Carol

[Geonz]

As weather goddess, I shall extend the fall for you (or would that just be global warming?)

No info, just good wishes...

[bcipam]

Geonz... I would be ever so grateful if you could do just that. Love Fall. Missed it last year as well. Thankfully California also has good (relatively) winters) and I'll be back riding by then.

[Thistle]

So hope all goes well and you amaze yourself with a really speedy recovery. Hope Fall lasts forever for you this year.

[Bikingmomof3]

Bcipam,
I am sending well wishes and prayers your way. Contact the surgeon's nurse, as she should be able to answer all of your questions. A positive attitude will help the healing process (I know, easier to say than to do). If they offer a hospital stay, take it. It will help the recovery process. again, my continued prayers.

[pyxichick]

Do what you can to focus on the positive aspect of the surgery, which is that hopefully once it's done, you will no longer have to deal with the problems you've been having with your colon.

As an Ulcerative Colitis sufferer, I can empathize with you. I hope all goes well with your surgery.

Take Care,
Kate

[Dogmama]

I really dislike surgery and definitely any hospital stay. I am so hoping this is an out-patient procedure. I rather be miserable at home but then I start thinking about how is it going to be to use the restroom etc. God please, no bed pans, Please! Questions, questions... OK I'm freaked out!

After my neck surgery, they said I had to stay 1 - 2 days. I asked them what the criteria was. They said I had to 1. Walk 2. Pee and 3. Eat. It did all of that 8 hours post surgery, the same day. They still made me stay the night.

Liars! :rolleyes:

Turned out to be a good thing. The pain was pretty bad and I was unable to swallow a pill, so the nurse had to grind up the percoset. The percoset made me sick to my stomach, so they gave me zofran (anti-nausea med.) They suggested that I take a valium & a sleeping pill for the night - yeah right. I would have been comotose for days.

I wish I would have taken one or the other. It is impossible to sleep in a hospital.

So, the moral of the story is - listen to the doctors & the nurses. They've probably done this once or twice!

[emily_in_nc]

bcipam,

Did they do a biopsy of the mass? I am assuming that it is benign (sure hope so) since you didn't say otherwise.

I don't have any wisdom to offer as I have been blessed never to go through anything like what you are facing, but I do send you my best wishes for good health and a speedy recovery.

When is your surgery? Please come back and tell us all how you did afterwards (I know you will.)

Take care,
Emily

[bcipam]

Well just an update the mass is malignant (yes the big "C") and has to be removed. I went to visit the surgeon today and was promptly told they don't take my insurance (United Healthcare Choice Plan Plus) $350 please for the initial visit and I will have to put the full 30% (my share for an out of network doctor) up front before the surgery. :eek: So I walked out. Spent the entire afternoon trying to find a surgeon in my area who would do the surgery at my preferred hospital (St. Joseph in Orange, CA). There isn't one. So Plan B and maybe Plan C. I found a doctor, but he operates at the hospital not in the plan. Have to find someone and someone soon. Geez with all the other stuff I have to worry about never thought I would have to worry about my insurance. It's is another world nowadays.

I complete my testing tomorrow and am ready to go... just right now I don't know where that is....

It's funny everything i read said I should see a surgeon and then seek a second opinion. Great I can't even get the first opinion much less a second!!!!:mad:

Need to get this taken care, its making me alittle depressed and keeping me off my bike. Not good. not good at all!

[salsabike]

Hang in there, bcipam. My dad had colon cancer, a quarter of his colon removed, and went right on trucking---so just know that it can happen and work out OK...

[Tiffanie]

Pam, I'm really sorry you're having such trouble with your insurance. That should be the last thing you have to deal with. :mad:

Keeping you in my thoughts...

[DeniseGoldberg]

Pam -
I hope that you can quickly find a doc who can do your surgery in your hospital of choice and who is covered by your health plan. If you continue to have problems finding that person - do you think it might be worth a call to your health plan to see if they can give you some names. (Oh, I know that you probably already thought of that, but just in case...)

In the meantime I'm sending good thoughts and wishes your way. Best luck, and please keep us posted.

--- Denise

[Duck on Wheels]

Oh Good Grief! The US needs to get a national health system! Everybody's insured. It costs LESS than what you folks are paying now. And that nonsense about "choice"? Don't make me, well, I'd say laugh, but it ain't funny. Not in this situation, it ain't.

But as for recovering from surgery ... The big issue is the incision. As somebody up above said, if they can do the surgery laparoscopically (so-called "keyhole" surgery) then that doesn't take long. If it's an incision from breast bone to pubic bone, then it takes some weeks, even months of training to get back to where you can stand up straight, walk as fast as before, and then a bit more to build up the core strength for a long bike ride. But that said ... I no longer remember how long it took. I only intellectually recall the pain involved. The sensory memories are now long gone. Of course, your recovery time may also be affected by additional treatments. After the surgery they may want you to do some radiation or chemo therapy to catch any stray cells. But you'll cross that bridge if it gets erected in front of you.

Keeping fingers crossed for you. Remission rates (i.e. cure rates) are good for bowel cancer. Let's hope you're with the majority on this one and do just fine once you've found your surgeon.

[tprevost]

Pam,

I've been off the boards lately and Tiffanie brought this to my attention. I am so bummed to hear about what you are going through. My thoughts and prayers are with you ... and please, you have all my numbers, if you need anything at all, please let me know.

Tracy

[caligurl]

GAWD how i HATE insurance companies! :mad: :mad: :mad: :mad:

[Trekhawk]

Pam - that is terrible news. I hope you find a Doctor soon and get on the way to recovery.

Sending positive vibes your way.:)

[bcipam]

Something more positive - and thanks all for "talking" with me and directing me through this... I have found 3 doctors in my area that are Board certified and work through good hospitals (so I figure they must be OK or the hosptial would provoke privileges). Will be calling the attending physician today to see if their office will help me contact and select a doctor. How scary not knowing the doctor before having the surgery. Talk about an act of faith!!! I'm also going to make an appointment with the Attending and ask him to provide more details about my diagnosis and pronosis. Hopefully after the CT Scan today he will have a complete picture of my disease and how it can be treated.

A good friend called last night who happens to do cancer research of all things, and talked to me for some time about the disease, how its treated, etc. The prognosis looks very good and I'm much more positive today than yesterday.

BTW a note to all those out there who take having a life partner for granted... it's times like this it would be so much easier to get through the down times if someone I loved could just give me a big hug and say "I'll be with you through this..." You can't imagine how alone at times I feel even though I am very blessed to have loving and caring friends and family. My Faith is also a pillar for me right now. But it would sure be nice to have that love one close by.

Take good care of those DH's and BF's and of yourselfs. My best friend's mom just had a stroke. She is 5 years older than me. Turns out she hadn't been to a doctor since the birth of her last child (38 years ago!!!). She has uncontrol diabetes and the stroke was related. If she went to a doctor on a regular basis this never would have happened. AND if I had the screening test when my GP doctor first started bullying me to do it, I wouldn't be in this situation. Get those Mammograms and colon screenings when you are supposed to. Don't be stupid like me!!!!

[Trekhawk]

Pam - glad to hear you are getting the Doctor situation sorted. Thank you for reminding us not to take our partners for granted. Im so pleased to hear you have close friends and family that can be there for you.

Please keep us updated on how things are going.

Sending Hugs

Leslie

[KnottedYet]

(((((((big hug))))))))

We'll be with you through this!

[KnottedYet]

These gals are great, and are great sources of support and info. I can't speak highly enough of the value I place on the women I've met and the support and comraderie I've felt with Team Survivor.

www.teamsurvivor.org

If you have 5 minutes, just find your local Team Survivor (there are at least 4 in California) and drop them a quick line. Tell them what is up with you and ask for info and help. Many Teams also have message boards.

KnottedYet (Not Dead Yet.... get it?)

[Aggie_Ama]

(((Hugs))) Hang in there. It is okay to be angry, depressed, cranky. My dad is about to have his last bought of chemo for colon cancer. It has been pretty minor, more like a big stinking inconvenience. Hopefully, yours will be the same way. Actually, I hope you don't even have to go the chemo road.

And kudos to you for preaching about preventative screening. My dad put of his colonoscopy for nearly 3 years. DUMB DAD! I have to have my first at 40 thanks to having a family history and I will not put it off.

Keep your faith and we are all here to listen. :)

[Dogmama]

How scary not knowing the doctor before having the surgery.

My husband was dx'd with colon cancer on Dec. 30, 2003 and had emergency surgery Dec 31 with the first available surgeon. Yes, very scarey. This guy turned out to be top notch and highly respected. So, we never know what will be put in our paths.

[bcipam]

Can I ask how your husband is now doing? Was the overall experience for him OK? What was his disability period like?

I do have an appointment next week to meet again with the attending physician to ask all my questions. The following week with the surgeon. I guess my surgery will be by the first week in October. Doesn't appear to be any hurry on the doctor's parts. Next day surgery - now that's scary! I pray everything was and is now OK.

[emily_in_nc]

Pam,

You will be in my thoughts. My husband's best friend is battling colorectal cancer (in his 40s - so young!!) that wasn't found until it was stage four (he put off screening due to insurance issues, which is very maddening!!), and yes, it has metastasized. It is the worst possible type of this cancer, and we are all very scared for him, but he has an amazing spirit and goes into each round of chemo, radiation, etc. with the most positive attitude. If anyone can beat it, he can. And you will too! Lean on us here - we can be a virtual support group.

Glad you've found some possible doctors and hope you can get the surgery behind you soon and start recovering and living again. Your bike will wait patiently until you are able to ride again - and you will. We hiked with our friend this spring, and he was amazing - never tired at all!

Sending you lots of hope,

Emily

[Bikingmomof3]

((((((((Pam)))))))))

I am keeping you in my prayers. We are here to listen, comfort, and do whatever we can. I wish I was closer and could be there for you.

[crazycanuck]

Hey Pam,

I'm sending you my wishes, luck, smiles, hugs, a nice teddy bear and another smile your way.

Take care & we'll be here for you when you need us.

:) :)

c

[Dogmama]

Can I ask how your husband is now doing? Was the overall experience for him OK? What was his disability period like?

He is doing great. It had metastisized and he had his spleen, part of pancreas and some lymph nodes removed. He also was overweight, smoked, etc., and was the worst candidate for surgery. He did have complications. A lot of them were due to his horrible lifestyle going into surgery. He did chemo for six months. Since then, he has been cancer free. He gets blood checked every three months and a CT scan once a year. His oncologist said that 90% of these come back in three years and we are four months away. Oh, and he had another colonoscopy one year post surgery.

My recommendations are that you be sure you are well hydrated before surgery. It will make finding veins much easier. Get your nutrition right and keep up your exercise. Post surgery, get up & walk as soon as you can to minimize the chances of blood clot formation.

There have been studies showing that red meat, anything with nitrates (e.g., lunch meat, hot dogs) and anything grilled are carcinogens that lead to colon ca. Also, calcium in the form of carbonate, the cheapest kind, has been shown to help. Attitude and most importantly, prayers, are extremely important. I hope you will let everybody know when you are going in for surgery. I believe the power of prayer and energy is invaluable. His oncologist is still amazed at his progress.

Also, try to not listen to all the people who will tell you horror stories. I got so tired of people telling me about their friends & relatives who had bad outcomes. Everybody is different and you have a huge advantage because you are healthy.

BTW, he doesn't smoke anymore, started riding a bike (think Pee Wee Herman, but still...) and works out in a gym which is amazing for him. I told him if he ever picked up another cigarette, he'd need a colonoscopy to extract the pack. :eek:

Again, he was NOT in good shape when he went in. His bowel was almost completely blocked, thus emergency surgery. He had been ignoring symptoms for a long time. This doesn't sound like you at all. I'm assuming that the PET scan showed the ca was localized to the colon, correct?

[bcipam]

Well, like your husband I had symptoms as well before I went in. This last March I started having cramping and what I thought were stomach issues. My bowel habits changed (from once a day to 2 - 3) and by April/May I noticed noticing bright red blood after I wiped. OK ladies I know this is gross sounding but I want you to know what happened to me so it doesn't happen to any of you. I thought the blood was from hemorroids (sp?) 'cause I was going to the bathroom and straining so much.

In May I went to my GP and he immediately ordered a colonoscopy and referred me to Dr. Debian. Now I wasn't particularly concerned. I had chalked all my problems up to stress. In March alot of bad emotional things had happened to me (yes, involving a man - what else) and I was very depressed and upset over them, I thought that caused my stomach problems. Anyway, the colonoscopy was scheduled for June; I prepared for it, was in the hospital, IV hooked up and everything but due to an earlier patient problem, left without having the scope and rescheduled.

I got the first appointment of the day so I wouldn't have the same problem that occurred in June and had to wait until August 28 for that. Again I thought no problem, it's just stress and it will go away. But it didn't. Symptoms remained the same and now after doing some research realized I have all (not just some - ALL) of the colon/rectum symptoms. I put off what I should have done in April and basically I put off what my GP has been asking me to do since I turned 50.

If anyone is having "stomach" distress - please check out websites on colon cancer and see if you have some of the symptoms. If so - get thee to a doctor and have it scoped. If I had gone to the doctor early - it could have been removed during the scope and would never have progressed into the mass I'm dealing with today.

I also don't mind hearing the horror stories. It lets me know what can happen, what might occur. I need to learn to be prepared for the worst. Than if it's not the worst, I can let out a sigh of relief.

Ladies... I thank you so much for this opportunity and forum to discuss my concerns. Makes me feel so comfortable knowing I have some way of letting out and dealing with someof this stress. Your good thoughts, warm wishes and prayers are more appreciated than you know. Thank you, thank you all soooooooooo much.

[tprevost]

Pam,

I am so glad that you are working out the issues w/doctors and insurance. I just wanted to add that you are in my thoughts and prayers every day and my wish for you is an uncomplicated procedure and a speedy recovery. You are healthy and fit so I'm sure that will be the case.

Also, thank you for sharing your experience and symptoms as I'm sure I would have come to the same conclusion if I saw bright blood in my stool.

Please let us know (PM me too please because I have not been able to hang on the boards very much lately) when your procedure is scheduled. And again, if there is anything at all I can do, please let me know.

Lots of hugs and prayers going your way!!!!

Tracy

[betagirl]

Hey Pam

Sorry to hear about your troubles. I have not had abdominal surgery, but know a slew of people who have. Like Duck said, it depends on how they have to do the surgery. The less invasive the incision, the better you'll be for recovery.

With that, the recovery will be long. It's in an area that gets a lot of use, so just being able to get up and move around will be a challenge in the beginning. I do recommend trying to walk as soon as possible. People seemed to have done better getting moving when it was allowed, even if taking only a few steps. If they do the long cut, it's going to be pretty gross to look at. So try to arrange for someone to help change your dressings for you once you get home. Again if you have it done laproscopically, that will be less of an issue. You're probably going to be on a bland diet for a while too, and perhaps stool softeners while that heals down there. I had surgery for a fistula (I have crohn's) and was on those for about a week. I was afraid to eat anything anyway, so I relied a lot on jello and broth. My incision was closer to the end of the pipe :)

A lot of the people I know who've had surgeries have crohn's or ulcerative colitis. They all have described it as being painful, but have rebounded well. Some are marathon runners, and have gotten back into their sports just fine. One is a cyclist and we chatted about his recent surgery. He said it took him about 8 months to really get back to where he was on the bike.

I know this is all anecdotal, but hopefully it helps give you some perspective. Thankfully they found it and you can be treated. I also can't stress enough getting stomach issues checked, especially if you have red flag symptoms. I didn't have colon cancer, but I did find out I have crohn's. Of course these are rare conditions, but best to be preventative.

Good luck Pam!

[bikerz]

Hang in there Pam! Lean on your friends and community - they will be honored to help you in anyway they can, as will we!

[Lise]

Thinking of you, Pam, and sending best wishes for strength, faith, and healing. Lise

[Jones]

I will add your name to my church's prayer circle and of course keep you in my prayers. Jones

[bcipam]

I will add your name to my church's prayer circle and of course keep you in my prayers. Jones

Thanks Jones... I appreciate that. I do believe in the strong power of prayer!

[Selkie]

Pam -- I just saw this thread and I'm so sorry to hear about your diagnosis. I'm sending lots of good thoughts your way!

[Duck on Wheels]

... I do recommend trying to walk as soon as possible. People seemed to have done better getting moving when it was allowed, even if taking only a few steps. If they do the long cut, it's going to be pretty gross to look at. So try to arrange for someone to help change your dressings for you once you get home ...

I gather things are not handled the same in the US as here (Norway). That whole insurance situation again. Don't get me started. Or do. The US uses so much more money per capita on health than anywhere else in the world, yet millions are uninsured and even the insured find that they're forced to cut corners to save the insurers money!

But back to my point ... Here, at any rate, the recovery phase is pretty standardized. Depending on what type of incision, you may have anywhere from hours to a few days in the ICU. Already as soon as I was awake, there was a PT by my side, helping me to cough, massaging out leg cramps, and having me sit up, then stand beside the bed, then take a few steps, and so on. I think the program took a total of 2 weeks with daily events to celebrate (off the morphine pump, various drains and tubes removed, first shower, first flight of stairs, first no-foods-barred meal). I was asked about my home situation (any stairs? anybody to help with this and that?) and not sent home until I could handle it (in my case stairs training and instruction on bandages etc. before I went home). I went home with an exercize program (starting with daily walks, then moving gradually to situps and other core muscle exercizes), a schedule of follow-up outpatient appointments, PT appointments, and so on. I don't remember it all, but I do remember that I found it all relevant and helpful.

Well, let's hope that things are handled as caringly over there! On the bright side, US hospitals DO have great cancer cure rates and are quick to use the latest medications and therapies. All in all, don't worry about the recovery time. It'll take the time it takes, but you WILL recover. And however long it takes, there will be milestones all along the way to keep your spirits up.

[betagirl]

Hey Duck, I think the average hospital stay for bowel surgery here is 10 days. At least in the Chicago area. I can't comment on CA, but I'd guess it's similar. I don't know about the PT though. So if there isn't that available Pam, try to arrange for people to come by every day to motivate you to get moving.

My surgery was done outpatient, but was on my butt and not my abdomen :D I did have to be off work for 2 weeks though. At first I thought that was exaggerated and unnecessary. I soon figured out that it certainly wasn't. Pam, it'll become a balancing act of taking the time to recover and making progress in doing the things you could before. Frustration will most likely come along with that. Try not to expect too much too soon or be too hard on yourself. At least for me, that can sometimes be difficult to balance.

I'll be thinking of you.

[Bruno28]

Pam -

I'm really sorry to hear of your diagnosis. I will be thinking of you and sending you good thoughts.

I echo your message to others about getting things checked out especially for over 50s. In Scotland we are just introducing national screening for everyone over 50 because of the prevalence of bowel cancer here.

[uk elephant]

Hi Pam!
I have had bowel surgery in the US unfortunately and am now doing pretty well so I thought I'd share my experience. Luckily I was covered by the Norwegian National Health insurance so insurance coverage wasn't an issue.

I had the last bit of the small intestine and the beginning of the large intestine removed due to Chron's. They basically cut out about 6 inches and patched it back together again. The incision for the surgery was from my navel down to my panty line so not quite keyhole. I was in the hospital for 4 days I think. The doctor had estimated 6, but I was up and about quickly. Being otherwise healthy before going in I think helped. And being stubborn perhaps. I hate being sick. I used the morphine pump once when I first woke up. It made me so woozy I never used it again. And generally the pain wasn't bad at all. I didn't need anything more than the occasional tylenol. As soon as I could, I got up. At first just walking to the edge of the bed and back. Then later that day a lap around the ward. The next day I was doing several laps and they figured I was ready to head home. Recovery at home was a lot quicker. Basically walking every day. To the bus stop, then to the shop, then to campus. I was back at work two weeks after the surgery. The main limitation was, I was not supposed to lift anything heavy or otherwise engage my stomach muscles too much for the first month or so. After that, I was back to normal except that my stomach muscles (and general core strenght) was gone. A couple of months after the surgery I started swiming to gently start getting back into shape and I was cycling to work every day. The surgery was at the end of January and by the beginning of June I was out in the field doing fieldwork involving carrying heavy loads up big mountains every day. I realize I may have been lucky recovering so quickly, but I'm sure a positive attitude helps. I had a lot of support from friends, and moral support over the phone from BF and family (who were both in Europe at the time while I was still in Illinois).

I hope your surgery goes well and that you recover quickly too. Sending you all the best of luck and virtual hugs!!!

[winddance]

I just saw this post, Pam, and am sending you my best wishes for a successful procedure and a speedy recovery. We're all here for you!

[HipGnosis6]

Best of luck to you in this, Pam. If there's anything we can do to help you beyond offering our experiences or well wishes, please let us know. And please keep us posted on how you're dong.