Perineal Proctectomy Experience So Far

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Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 9/3/2017 10:11 PM (GMT -7)   
For those who are facing this fairly common surgery and wondering what it is like- I must start off by saying The buildup to the operation was worse than the operation itself --SO FAR-- I had read all the horror stories- about infections, cysts, funneling, grooves- open sores etc- And to be honest- those htigns could still happen in the following weeks- but for now though- IF everything stays healthy, then I was way more worried than I should have been about what the pain was going to be like and hte healing complications

I asked my plastic surgeon what % the complications were and He said 10% chance- I questioned it and said I'd read it could be around 40-50% and he said "Yes- typically it can be that high, but IF my patients listen to me, are very careful for a few weeks- the rate is only 10% chance anything will happen"

He did tell me point blank that he expects me to pop a few stitches- but felt confident he could quickly get things under control and keep infections and open sores at bay if he took care of it quickly- Said there was only a slight chance of needing further surgery to correct problems is they should crop up-

The surgeon that took the rectum/anus etc out was less cautious- ad told me he was very pleased that there was
so little bleeding' and that everything sewed up so nicely especially after having had Chemo and radiation in that area- I really came away from the meetings much more encouraged that when I went into the operation=- I'll be honest- this operation scared me stupid-

My plastic surgeon said "No showers for 4 weeks- maybe longer- my other surgeon said "Pfff- showers are fine- just avoid excessive water on bottom area because of dis-solvable stitches" PS said "N stretching at all, no reaching, avoid excessive walking- be extra cautious for a few weeks- the S though was like "Walk as much as you can- get a little light exercise- just don't lift heavy objects over 10 lbs for a few weeks-

OK.. So... Had the surgery on Aug 30 (wednesday) for rectal tumor in the stump that was cancerous- Stage 2 T3 (My surgeon told me right before I left that the results were in- absolutely no sign of cancer in lypmph nodes- and the radiation and chemo had killed the tumor in stump and there was just scar tissue there now with perhaps a tiny amount of cancer cells which of course was removed).

I was released from hospital on Sat- Doc wanted me to leave on Friday- But I had walked too far on Thursday and got really weak and shaky- I misjudged how much i could do- so opted for another day stay. I'm still pretty out of it, but will try make sense for you all:

Impressions so far:

1: (Bottom Area) Got a slice from tailbone right up to the whodunit (about 1/8 up the scrotum- sorry for bad language)- it looks like a nice clean cut- sewn with dis-solvable stitches- nothing looks pulled apart yet- so that's good news- tryign to be careful how much i move and what i do- not a lot of pain in this area unless i sit too long in my computer chair- I am using a memory foam cushion which helps a lot- keeps the cheeks together- and helps to find a comfortable position which wouldn't be possible without the pillow i believe- The aching starts after about an hour though- but i keep shifting carefully to relieve the3 aching

I was very very surprised that the pain in this area wasn't worse- I expected it would be the area that hurt the most- it hardly hurts at all, and the anesthesia --should be-- about worn off by now- so I'm thinking that what little pain there is will be all there is --UNLESS-- an infection sets in or the scar opens up- but so far so good- I was actually sitting nearly upright the next day- but the most comfortable position is leaned back to where the pressure is mostly on the tailbone area

2: (Leg/Thigh Area) This area hurts the most- it gets really achy when the pain meds are about worn off- before my next dose- If I stand too long, stretch a bit too much, or straighten my leg too quickly, it begins to really hurt and make me sick to my stomach- thaT is what happened when i walked too far- actually threw up from the pain a few times- but that was my fault for pushing too far- When I'm just resting, the leg pain is very tolerable. One of my biggest problems is forgetting I've had an operation- where my mind is off on something else, and I stand up too quick without being careful- then i pay for it for abotu 1/2 hour or so

I have 3 drains on my leg- 2 down by knee on inner thigh area- one near groin- the one near groin is nearly painless- the two down by knee hurt the worst- if it wasn't for that pain I would be super impressed with hte whole operation painwise- and even with that pain- it's still very very tolerable- so far-

The leg scar looks like a Frankenstein skar- because is has staples and soem sutures- The staples don't really hurt too much except for down by the knee for some reason- but the pain meds are keeping that pain from being too much- I can walk around mostly fine- but when the knee area gets aching too much i do hobble pretty good- I've had Frankenstein scars before- it just takes a little while to heal- no big deal if I can remain infection free-

From what i can see- it looks like the surgeon did not use a skin graft i n hte bottom area- just pulled each side together and sewed it- it feels weird as it's narrower there now- but maybe that will stretch later-

The couch we have is quite soft thick foam which really really helps in the recliner part- again ,the object is to recline until the weight is mostly over the tailboane- I can sit like that for hours if need be- A harder foam couch might cause it to ache more- but really- the hos[pital bed I was in was kind of a firm mattress- and layin back was fine- abut 1/2 way between fully laid back and fully sitting straight-

I was really dreading hte ride home from hospital- but the memory foam cushion was all i needed with the seat laid back to almost prone position- Made the trip just fine=- didn't even cause any extra achiness-

IF everything remains healthy- no open wounds or infectiousness etc- then I would say this operation is very doable painwise- However, I am on disability- so I don't have to worry about taking time off so that is to my advantage-

Energy-wise though is a different story- but really, even that's not too bad- I do get overwhelming exhaustion and will fall asleep in the blink of the eye- liek i did during the chemo and radiation-

I get sick to my stomach when the aching gets too much- but please note My stomach is messed up with ulcers and Crohn's and had a Ruyan Y (sp?) for the Crohn's, so it doesn't takem uch to make me sick to stomach. I'm at least not throwing up any longer- but will lose apatite-

I get some leaking around the drain tubes- but not much- gauze takes care of that ok-

The knee area --feels like-- it could get ifnected as it's really tender- a little red- but not too inflamed though so it may not- The leg scar looks like it's healed al lthe way down the leg- with maybe a few small areas of --possible-- concern- potentially- but maybe not- too early to tell at this point- My abdomen scar when i had iliostomy done, did that as well- and had a few small areas that took a little longer to heal, but they were no big deal really- it all healed fine just took a little while=- didn't slow me down any-

Sitting in the comp chair I sit really slouche so that I'm almost layingg down- that is them ost comfortable position for now- and puts htel east amount of strain on the bottom area- and allows air to the bottom area which is important while healing-

I do have an issue with dribbling when urinating- it will just start going while I'm standign htere without my trying to get the flow going- it just goes a bit- but it seems to be getting better- I thought i was going to have to go home with catheter in- but fortunately was able to start going and the pain and urgency subsided a bit- it's better now 3 days out for sure- just hope the automatic dribbling stops soon- have to tuck paper towel into the tight mesh underwear they gave me for now- this underwear btw holds the gauze inplace in bottom area- they are just cheap disposable ones, but it works well- holds the paper towel inplace well too- I'd say the dribbling is only happening about 2 trims a day now- and not when I'm just sitting or standing fior no reason anymore- so i think this won't be an issue much longer-

I did have soem odor somewhere- I think from one of the drain areas- but it only lasted a day or so- it's gone now- don't think htere is an infection there or anything- might have been the blood on old gauze got a bit smelly or something

Changed the dressing only once- docs don't think it needs it more than a couple times a week- Because they left the Gauze very loose- it didn't stick much to scar or blood on scars- One small area had to soak- but it came right off no pain- in hte bottom area they just fold a guaze and place in that area- underwear holds it inplace fine- might want tape though if you go out=- just incase-

IF no infections or open sores crop up- I'll not even need a home HC nurse to tend to the wounds- can reach everything myself fine- BUT- IF I will need a VAC healing unit- then yes- I'll need a nurse-- that area is just too awkward out of the way to place a VAC sealing myself- Hopefully I won't need a VAC unit-

Ok this is long enough- If I think of anything else- I'll post later- if complications arise- I'll keep this updated hopefully- But so Far so Good- Had loads of people and churches praying- It appears that God has been pleased to answer our prayers-

xy123
Veteran Member


Date Joined Feb 2014
Total Posts : 678
   Posted 9/4/2017 4:35 AM (GMT -7)   
Do you experience erectile dysfunction because of the surgery?

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 9/4/2017 8:25 PM (GMT -7)   
i don't know yet- things are numb down there right now and a bit painful- I did get some issue with holding the urine in (incontinence?)- but that seems to be clearing up. The surgeon told me before the surgery that because I'd already had an iliostomy inplace, and just the rectal stump, that most likely i would not have ED fro m the operation, as most of the delicate work in the previous iliostomy surgery had been done already- and i didn't get ED then- He felt he could do the rectal removal without damaging the nerves- Right now it's just a bit too painful to test to see if everythign works there or not- will know more by end of week I'm sure

xy123
Veteran Member


Date Joined Feb 2014
Total Posts : 678
   Posted 9/5/2017 4:25 AM (GMT -7)   
Thanks. I hope everything goes well for you. Let us know.

UCwhat?
Veteran Member


Date Joined Dec 2012
Total Posts : 1037
   Posted 9/5/2017 3:44 PM (GMT -7)   
Glad to hear things seem to be going quite well for you so far! Keep resting and healing!

Also, for anyone with UC that is reading this....that surgery sounds like it was much more involved than my surgery to get the anal stump removed and closed up. Maybe that was because of the cancer or different circumstances.
6/12:DX Mild Ulcerative Proctitis:quick remission w/1 Canasa nightly
MAJOR Flare began late 11/12
By 2/4/13, UC Severe into transverse colon
Prednisone refractory,little to no relief from enemas or Remicade
3/13/13:Proctocolectomy w/end ileostomy;pathology showed Severe Chronic UC throughout colon
2/26/15:Perineal Proctectomy (all sewn up!)

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 9/5/2017 9:32 PM (GMT -7)   
Thanks folks- regarding the surgery- there are several different ways for doing the surgery I guess- some leave the wound open- some close the wound without filling the cavity left by the removal of stump- some, like mine, take a muscle out of the leg- a little used one- and fill the cavity- leaving the blood supply intact- I don't think the fact that i had cancer there caused it to be more extensive- as as the usual procedure was done which would have been same as if i had just Crohn's there or colitis- no extra amount of tissue or organs or whatever were removed- My surgeon just said that filling the cavity with hte muscle decreased possible complications when healing- (I guess some surgeries they used to use lamb tissue or something to stuff in the cavity- not sure why they don't do that much anymore? Maybe the muscle works better)

The surgeon also explained that if nothign is used for fill- the remaining intestines will drop into pelvic area and could cause problems with urinary process- I guess it's more of a problem though for women, but can be for men too- not sure though what % it would happen to-

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 9/5/2017 9:53 PM (GMT -7)   
Update Day 7:

Still quite a bit of pain- Docs gave me only 5 days of pain meds (after i was released)- hope the pain subsides some in the next day or so as sometimes it causes nausea and vomiting (only puked once so far- but when i over do it, i get close to it)

Some reason groin pain is increasing a bit- Doc doesn't feel it's a cyst or infection though at this point- Said scar looks great on bottom, and leg scar is looking pretty good- getting sum leaking on leg scar though- around the drain tubes too- which he says should stay in for another 2-3 weeks- He's perhaps gonna remove one next week- that will help some-

woke today with leg really aching - doubled up on pain med for my morning dose (Doc said it was ok if pain got too bad- amounted to 10mg of oxycodone)- that helped a lot- was able to get around and get a few things done- but i can say that if i had a job I could be at work yet- it doesn't take too much to cause things to ache a lot-

Sitting in computer chair is still rough- even with the gel cushion on top of chair cushion- can only manage an hour or two-

The pin, which I'm sure some want to know about- is mostly bearable IF I take it easy and keep on the low dose pain meds (5mg every 6 hours) - the trick i think is to keep on a tight schedule for the meds- and just rest as much as possible- One positive hting about the meds is that they cause a bit of constipation- which is great for those of us with an iliostomy- it's helped me be able to wear pouch 3 days in a row- which is a big help because changing it is a bit painful for now- qwith havign to sit on hard foldout chair (and cushion- but still it gets thigns aching by the time I'm done)

I suppose I could go around town briefly, but it's a pain with the drains in and the limping- so gonna just wait to do so until leg heals a bit more- will have to figure out something to hide the drains-

I've got a nurse coming by twice a week- but really it isn't necessary- as no VAC sealing and no packing of wounds is necessary as of now- she's basically just coming by to make sure no infections are taking place- and to ask a million questions lol

Not sure when the staples in leg will come out- not sure what that is going to be like- or how it will be accomplished- will likely update when that happens-

All in all, I have to state it again: IF everything remains healthy, no infections or cysts or tunneling or whatever- then I'm very very pleased with how this turned out- and my pre-op anxiety wasn't necessary- of course I'm not out of the woods yet- but so far- it's been very tolerable with just the occasional times when the pain gets a bit much

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 9/10/2017 9:16 PM (GMT -7)   
Day 11:

Sitting is hard- especially in computer chair and harder chairs- thigns get achy pretty quick Even nearly laying in a recliner is getting painful- after awhile that is- Hopefully things will improve there soon as pain medicine is now gone-

leg drains are leaking- and painful- the scar itself is also leaking a bit- The guaze is enough to keep it in check though- but the leaking around the drain tubes is getting a bit much=- been wearing PJ's since release from hospital as I can't get regular pants on over all the tubes- I guess they are going to leave the drain tubes in for awhile longer- nother 2 weeks or so-

Getting a bit of itching- but nothing too uncomfortable so far-

Feels like I'm sitting o na tennis ball- don't know if it's because there's a bit of swelling or if that is just how it's going to be from now on- constantly shifting position trying to get comfortable-

still a bit of urine issue where it doesn't shut off at the end- I think I'm done, then it just goes a bit more when I'm not expecting it to- could still be due to anesthesia I guess- We'll see how that pans out-

still plenty exhausted- sslept most of day yesterday-

Slow going-

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 9/17/2017 9:34 PM (GMT -7)   
Day 19

Still not able to sit for long without pain causing me to shift- but I'm gaining every day now- however, it still feels like I'm sitting on a tennis ball- and the muscles they tucked into the cavity bunches up and almost feels like it's cramping- and causes swelling in the groin area where it was tucked through- It swells when I try walking, or doing things that move the muscles there- - and it hurts soem when it swells- Doc says it 'should atrophy over time because it won't be active' but I've got my doubts about that and think I might have that issue for life- hopefully not- but we'll see

The two drains left are quite tender where they come out of skin in leg- I've got some pain now below the knee- almost to the ankle- not sure what's causing that as there is no scar there- I don't see any red streaking and don't feel any heat coming from it- but it's been paining me for a few days now- nothing debilitating- but quite uncomfortable

If I was working at say a desk job- I'd guess that in a couple of days I could go back to work and sit for the day as needed- so a good three weeks I'd say would be the time one is down from this operation-

Drains come out in two days- hopefully- one drain seems to be producing more now though- so we'll see-

As of about 5 days ago- i can finally get my sock on my foot myself- it is a bit painful- but at least I can do it now- which is a milestone-

Will be nice to wear pants again after drains are out- instead of loose fitting PJ's

Got the staples out when they pulled one of the drains- that was unpleasant- but bearable- barely- most were painless to remove- a few in the area that is giving me trouble made me flinch pretty good- Nice to have them out though-

Doc says everything looking pretty good so far- no issues with cysts or wound opening up or anything

One thing i forgot to mention was they tapes the cheeks closed, which i think made a big difference in being able to sit more comfortably, and keeping the wound from opening up accidentally- It was just a few thin strips of surgical tape which are still holding amazingly- but the bad part is i can't see the scar underneath well- but what i can see looks good so far-

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 10/4/2017 12:26 AM (GMT -7)   
Been 4 1/2 weeks now- things are quite a bit better- but still can't sit upright for long periods unless it's on cushions like a couch- I guess that is because of the muscle they used to fill the void is bunched up and not atrophied yet- and the fact the scar is tough stiff and not very flexible at this point-

Gotta have some minor day surgery to fix two small areas where the skin was sewn back together- left a bit of a divit that is tight and bleeds from time to time- Doc says easy fix though- and a skin flap that gets irritated and stings- He coulda done the skin flap in office- but decided to wait and do both under local anesthesia- Says I'll probably be in more pain for a few days to a week or so- but nothing as bad as the proctectomy pain was-

developed surface vein blood clot- nothign too dangerous- but painful gonna take a month or more to heal i guess-

Still have urinary issue/leaking slightly, and burning urine- my primary physician says it's likely cistitis or somethign like that- likely caused by the either the chemo or radiation before operation OR a nerve was cut during operation- itm ight heal on it's own or not- gonna possibly be going on low dose anti-depressant (elavil) to control the burning pain and help with the incontinence- I guess it's common to go on that drug with cystitis- whoda thunk it?

Other than that- I'm walking good- driving again- Gettign out doors finally after being cooped up inside for nearly a month (mainly due to drain tubes- had three of them- was a pain to deal with- so just stayed inside till they were taken out-

All in all- my operation went really well- Doc said I was fairly fortunate not to develop complications really- but he did tell me going in that complications happened only about 10% IF folks listened to him and took it easy for 3-4 weeks- no showers, baths- etc- and basically just laid about house- fortunately I was able to do so- and things really have gone well

Just gotta get over this cystitis, and clott issue, and numbness in scar area- and feeling like I'm sitting on a tennis ball- and all will be well-

It sure is weird though getting used to not having to sit on toilet anymore, and not havign to cinch when urinating to keep from rectum expelling the mucus- infact I can't inch anymore- as those muscles are gone now- gonna take awhile to get used to that fact- itm ight also be why i have trouble holding the urine when i gotta really go- no muscles in that general area to 'hold it' I dunno though-

Wish docs woulda given one more week of pain meds though as goign to docs for followup visits caused quite a bit of pain- woulda been nice not to have so much pain- but with all the hysteria over opioids, docs are very reluctant to keep giving meds even after major surgery- oh well, the pain didn't kill me- it was just unpleasant at times- but bearable- sorta-

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 12/5/2017 10:29 PM (GMT -7)   
quick update- had an issue with the scar opening up again- small area- but had to have more surgery- doc thought it would be a quick surgery, but turned out longer thna expected- took about 4 1/2 to 5 weeks to heal from that one as well-

Sitting up fine now- scar is fine- but skin feels very taut down htere- Feels weird- like it's too taut and will tear if I'm not careful- but of course it won't- also muscle that was put into cavity rolls from time to time- very weird feeling- there is also a lump when the muscle was tucked through the thigh now- not painful, but doc says it should atrophy over time- leg is very numb where the scar is, and still getting pain in lower leg where they said i had a surface clot- not sure hwat is going on there

Doing chemo now- folfox- yuck- not tolorating it well very sick and extremely tired all the time-

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 724
   Posted 12/5/2017 11:02 PM (GMT -7)   
Nazareth,

Thank you for sharing your journey. I hope you continue to get healthier and that you feel better soon.

I have a few questions that you may be able to help with...

I am an older female with severe fistulizing Crohns and an end colostomy due to a stricture. They have left the remaining sigmoid, rectum and anus intact. They have indicated that at some time I "might" be able to be hooked back up. After everything I have read...I don't think I am interested. What does concern me is that the remaining non working intestine, rectum and anus can still get cancer. I know that cancer can occur quickly... So I have begun speaking to my CRS who keeps reassuring me and telling me they do not remove those organs unless they absolutely have to.

How long did it take you to find out you had cancer? How long do they think you had it? Did you have colonscopies? Were there any symptoms? Did you have the cancer before or after the illeostomy?

I apologize if these questions are too intrusive. I am just trying to figure this out... I realize that everyone is different with different outcomes...sometimes it just helps me piece things together...

I really do hope you feel better soon. After reading your post...I have some more thinking to do.... Thanks once again.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 12/6/2017 1:56 AM (GMT -7)   
I've read that having the rectal stump inplace creates more risk for cancer- apparently the digestive tract needs waste material going through it all the time in order to be healthy and not so susceptible to cancer- I was told that my chances of cancer would increase due to having the rectal stump remain- I went for about 30 years though with no cancer- then all of a sudden I was passing blood and emptying the stump more often (even though it was just a stump, and no waste was moving through, it would still produce mucus)

I had the iliostomy for 30 years

I don't know how much % wise it increases the chances of getting cancer there if it's left inplace, but I do think they try to leave it in because it is such a rugged operation- I think many folks go through life without gettign it (folks who have just the rectal stump inplace)

No- i avoided colonoscopies as much as possible- I went many years without having them- I relented about 5 years ago,. and it was ok then- but then the blood issue happened, and I felt it was time to get it checked- Glad i did now

My cancer was stage 2 T3- so it wasn't in there too long- it hadn't gone through the wall of rectum- but it was gettign close- They figured the cancer had only recently happened but didn't give a timeline where they thought it had developed-

I would say watch out for any changes that might take place- for me i went 30 years having to only empty the mucus once per day- then for about 4 months, i didn't have any at all- didn't have to empty anything- , then the bleeding began- and pain- If something is out of the ordinary for you- have it checked- if they catch cancer early, you stand a much better chance of surviving it- mine was caught 'moderately early' (moving on towards not early enough)

Thank you for the well wishes-

Let me add that it's better to keep it in if you can, and have it checked fairly regularly- and only get the surgery as a last resort- and just keep a keen eye on any changes- any pain in that area- etc

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 724
   Posted 12/6/2017 10:37 PM (GMT -7)   
Nazareth,

Thank you for your response. I will take your advice to heart. I
have a colonoscopy every 6 or 12 months.

I have mucus 2 or 3 times a day....although my CRS stated that was normal. The soft tissue stricture they removed in my sigmoid was just pre dysplasia....and it concerned the CRS and GI enough to have them keep a close eye on it and me.

I get frustrated because we can't see what is going on in there...and I didn't have symptoms one day..and the next I had a soft tissue stricture that would not go away. By the time they removed that section the colon had atrophied there and it contained a lot if "suspect" cells but they were unable to find cancer cells. A matter of weeks and it went from healthy at my colonoscopy to stricture to suspect cells. Scared stuff...so always looking for information.

I Thank you again for your response and for sharing your journey. I have been following your journey and will continue to do so. Good luck and feel better soon!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 71
   Posted 12/7/2017 10:51 AM (GMT -7)   
that's pretty quick development- perhaps you should talk to doc about more frequent colonoscopies just until they determine that you aren't developing those things so quickly again-

Thanks, it's certainly been a journey for sure- now I'm battling chemo for 4 months- but thankfully it's not 6 like most go through- hopefully i can take all 12 treatments- my first one was pretty rough- next one is next monday- yuck- oh well, very very fortunate that I'm able to get the treatment- Take Care and God bless- I'll be praying for you for peace of mind and strength-
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