It’s In The Bag
Here’s a picture of me taken in my actual hospital room on Tuesday May 30th. I’m displaying my 3 hospital bracelets and my “hep loc” IV connection thingie. Oh… and the charming and always-in-style hospital gown provided by Fairfax Inova Hospital.
And lest you get the wrong idea about exactly what kind of surgery I’m in the hospital for — the wires coming out of my ears run to my iPod. Not to a lightning-driven powerup system.
I’ve been in the hospital since Thursday May 25th and with luck, I’ll be discharged May 31.
If you’re interested enough to have read this far, you’re probably by now asking “So, Rebecca, what kind of surgery did you have that required you to be in the hospital for a whole week — that’s a pretty long hospital stay by today’s standards!”
And so I shall tell you.
Before I do, though, I want to spend a little time talking about personal privacy, and how it squares with other peoples’ legitimate needs for information.
Contrary to what you might think if you’ve spent much time reading my blog, I actually do have some personal boundaries. There are things I would never write about online because they’re private and because there’s no good reason why anyone else would need to know about these things.
When I first began my current medical journey, I spent a lot of time online looking for information about my condition and the surgery I was going to have. I found lots of articles heavily loaded with medical jargon and dry statistics but very little in the way of people’s personal stories just telling what it was like to have this thing happen to them. Was it especially painful? How long did it take to recover, really. How was your life changed by the procedure? It surprised me that I was unable to find much — and it may be that I just wasn’t looking in the right place. I think, though, the dearth of information may also have been due to the kind of procedure it was. In a world where people will happily tell you all about their breast augmentation surgery — a lot of people still don’t feel very comfortable describing surgery for removel of a giant polyp in their….um….rectum.
Yes. Rectum.
A word that inspires raucous cackling on the part of pre-teen boys everywhere.
I’ve got to believe I’m not the only person who’s come up dry looking for info on this condition. So, I’m writing about my own experience as a sort of public service for other people who are going through it. If you’re one of those people, be assured that it’s a lot more common than you might think. I’ll tell you about my experience and maybe that will make it easier for you to prepare for your own treatment. If you’ve got no interest in this topic or if you think it’s just going to be WAY WAY more information than you want about your humble narrator (and, believe me, there’s going to be LOTS of information), then I encourage you to stop reading right now. This is one topic for which my tolerence level for smart-ass comments is probably going to be somewhat low, so…
Okay.
First, let’s just deal with the word “rectum”, okay? All your rectum is is the lowest part of your colon. Your colon is your large intestine. The rectum is the last few inches where poop (choose your own cutesy term here if you want) waits to be expelled through your anus. Anus and rectum aren’t the same thing. Hey, maybe you already knew that. I didn’t.
So let me give you the short version of how I wound up here in the hospital:
- About a year ago I began noticing what I thought was an internal hemorrhoid situation developing. Everything I’d read about interal hemorrhoids, this thing matched the description. It sometimes popped out a bit when I was going then would slide back in by itself. It would bleed a bit when it would do that. Sounds just like an internal hemorrhoid, right? Yeah, that’s what I thought.
- In March or April I had my annual exam. Since I’m turning 50 this year, I asked the doctor about getting a screening colonoscopy along with all the other “you’re getting old now” tests. She agreed it would be a good idea and set it up.
- I had the colonoscopy — even mentioned to the tech ahead of time that I had an “internal hemorrhoid” situation so the doc should be careful down there — and we discovered that “Hey! That’s no hemorrhoid! That’s a giant polyp in your rectum, lady!” The polyp was too big even for the doctor to remove through the scope. If this sort of thing interests you, it was of the type called “villous adenoma”. That kind of polyp is especially eager to become cancerous so, even if it hadn’t been taking up a whole lot of butt space, I’d still have needed it out.
- The GI doc referred me to the colo-rectal surgeon and she took a look through “Ye Olde Rigid Proctoscope” (which really wasn’t as awful as I’d thought it would be. The secret is just to relax and think happy thoughts…
)
The GI doc had thought the surgeon might be able to just remove the thing by going up through the anus. Nope — not so. She couldn’t even see the base of the thing to know where she’d have to start cutting. - So… surgery was scheduled. Before the surgery I had a CT scan of my pelvis and abdomen so my surgeon could get the lay of the land — and could look for other suspicious areas in the neighborhood of the polyp. Nothing scary was uncovered by the CT scan, so we were on.
My doctor went in through my lower abdomen, using a laparoscope to assist. She ended up having to remove most of my rectum. The remaining bit of rectum was stapled to the colon. I also now have a temporary ileostomy so my colon can rest while it’s healing. An ileostomy, like a colostomy, is where the intestine is brought out through the abdominal wall and waste is collected in an externally worn appliance. (“The Bag.”) In an ileostomy, it’s the small intestine — not the large instestine (colon) that’s brought out to the surface. More about what it’s like to have an ileostomy later. Although no cancer was found in the tissue that was removed, they did find a small area of dysplasia (essentially abnormal pre-cancerous cells) on one edge of what was removed. The doctor told me she actually cut a bit more than that when she did the anastomosis so there’s probably nothing left to worry about. She’ll be keeping an eye on that section in particular, though.
Anyway, so now I have an interesting new collection of incisions in my gut: I think I counted seven new holes. Three small incisions are related to the laparoscope. One bigger inch and a half-long incision under my navel is also scope-related. There’s a weird sort of puncture wound in my left gut where a drain was left in place after the surgery. I’ve got a 5 or 6 inch incision that runs midline down from a couple inches below my navel right down to the pubic bone. (Cool! Held together with metal staples!) And then the ileostomy, of course. You would think that number of gut wounds would be very painful BUT, at the suggestion of my very clever surgeon, I opted for pre-operative placement of an epidural anesthesia line. (It didn’t hurt at all. They gave me a big shot of morphine and that’s pretty much the last thing I remember about getting the epidural placed.) They didn’t use the epidural as the anesthesia for the surgery itself — no, no. I had the usual “totally asleep” type stuff for that. Rather, the epidural was for post operative pain control. I have to say — it worked REALLY well. While it was in, I had NO pain. They took it out yesterday (also painless) and my pain level since then has been easily controlled with an occasional Percocet. No big deal at all. The only down-side to the epidural is that it tends to make your blood pressure low. My blood pressure is naturally low to begin with so, with the needle in my back, it got REALLY low — we’re talking readings of 70-something over 40-something at times. Because it was so low, I was sleepy all the time and couldn’t stand up for very long without feeling like I was going to faint. So… that slowed me down a bit. I’d definitely go with the epidural again, though. What a great pain control method!
The surgery went well, though it took longer than anticipated. It’s a difficult and complicated procedure, the pelvis is a small area to work in, and — from what my doctor said — my tissue was a bit on the “friable” side. Stitches wanted to rip out. Another interesting revelation was that I am very much NOT fat inside. The surgeon said she could even easily see my ureters — apparently that’s not common. So… to those of you who have the idea I’m fat, now the truth is out. I’m not even fat INside.
Okay… well, that’s probably enough for now. The next installment will be all about what it’s like to have an ileostomy.
Posted by RebeccaHartong on May 31, 2006 under Uncategorized
Hi Rebecca! I had wondered a bit where you were and then had remembered you mentioning some surgery a while back, so patiently awaited any news. I’m glad to hear things seem to have gone well and you’re recovering fine! You say you don’t want any smart ass comments, but you’re writing appears to have your usual humor and bent to it, so I’m assuming you’re doing well.
Everything you’ve described is so very strange to me. Hopefully I won’t ever have to go through anything like it, but you make it sound infinitely survivable. The idea of general anesthesia scare the hell out of me, though. I had it for an appendectomy in my mid-20s, and coming out of the anesthesia I heard the people around me talking as if there was some kind of problem besides that the experience was terrible to me: just nothing — no dreams, no anything. I know that’s kind of the idea, but for someone who has as lively a dream life as a real life, being out with no memory of anything is still worrying.
Take it as easy as they allow and get well soon!
Thanks for the well-wishes, Michael!
Yeah, general anesthesia is very strange.
My surgery, for example, was scheduled to begin at 8 am. I remember being in the operating room, seeing my doctor, seeing the big lights overhead. Then… nothing.
When I woke up in the recovery room, it was 3 pm.
Whoa!!
Much lost time!!
A couple people have jokingly asked me whether I saw any “grays” in the operating room…..
(Okay, for those of you not up on your alen abduction references: lost time is supposed to be a symptom of abduction. “Grays” are a kind of alien.)
[...] As regular readers will recall from previous posts, I had a partial colectomy with placement of temporary loop ileostomy on May 25th. This past Friday — July 14th — my doctor reversed the ileostomy. [...]
Hi there! I just wanted to thank you for your post. I’ve been having much of the same kinds of symptoms as you had, and I’m going in for a colonoscopy next week. Although I’m only 24, I’m worried that this thing isn’t as simple as “internal hemorrhoids.”
I just wanted to let you know that I really appreciate your being so open about it and that it has definitely educated me. Thank you again!
Hi Michelle! Thanks for the comment and I’m very glad to have been of help. It’s the sort of thing people are generally pretty embarrassed to talk about but when you need to know about it, you really need to know about it. Good luck with your colonoscopy and I’ll keep my fingers crossed for you that it turns out to be something that’s easily fixed.
For whatever it’s worth, know that I’m doing fine now. I had ileostomy reversal surgery last summer and, while it has taken about 8 months for my colon to more or less get back to normal, it wasn’t nearly as awful a recovery period as people might have you think.
So, even if it turns out that you need part of your colon removed like I did, this IS something you can get through and you’ll be fine.
You have my best wishes for good health!
I had lot of bleeding after eating a handful of peanuts twice in a row. Went in to have an exam and the doctor said it was the beginning of Diverticulitis. A month or so later, I’m having that “feeling” that something else wants to come out after a BM, then I squeeze it back inside. I’m so thankful I found your blog. I’m calling my doctor on Monday to have a colonoscopy scheduled. I’m 40 yrs old with two girls 6 & 4 and want to watch them grow, if the good Lord allows!!! Thanks for the information!!!
Hi Vicki! I’m so glad to have been of help. It was exactly for this purpose that I was so candid in my description. It may very well turn out that what you’re feeling is something completely harmless that can be easily fixed. In fact, that’s MOST likely at your age. So, schedule that doctor’s visit to have it checked out and try not to worry!
Good health to you!
What a relief to finally read something I could make sense of!! Thanks for being so direct in your explanation of your procedure and what lead up to it.
I am looking for reasons why my 42 year old hubby may have excessive bleeding right after he uses the bathroom (poops)? He is stubborn as hell and refuses to believe it’s anything worth worrying about. I, on the other hand, enjoy his company and would prefer not to be widowed at this young age due to his stubborness to avoid looking at the symptoms and what the possiblities could be. Just the thought of someone anywhere near his behind sends him running!! So where do you suggest I start? Should I just knock him out and drag him to the hospital for evaluation? That’s probably the only way I will get him there. I suggested maybe I could take some sort of sample into the lab for testing so he wouldn’t have to worry so much about getting poked from behind. He is such a worry and baby about doctors. Any helpful advice you can give me to share with him would be wonderful and so appreciated. Thanks for sharing.
Hi Lynn! Argh — yes it IS frustrating when husbands won’t take care of their health! I suppose you could start with one of those home hemoccult kits that test for blood in the stool. I’m pretty sure you can buy then at a pharmacy these days and just mail the completed test in to a lab. (I think I’ve seen these tests for sale up near the pharmacy counter — near where a person would buy blood glucose testing supplies.) That would at least be a start.
But, really — as you know — he REALLY ought to see a doctor. It may be just hemorrhoids. But it could be more.
Hm. What to do? If you have children, you might try getting him to imagine what it would be like for the kids to grow up without a father. You could explain that, while having your keister examined by a doctor is a little embarrassing, it’s SO MUCH BETTER than learning you’ve got colon cancer too late to do anything about it.
Show him my web page here. Maybe it will help him understand that this sort of thing really needs to be checked out by a doctor.
Best of luck on all this!
Hi Rebecca,
I too have had a recent ileostomy reversal, only 7 days post op now, but am wondering how long i need to plan on having all this pain, gas and constant urge to have a bm? I was diagnosed with colon cancer in Mar 07 with sugery to remove the tumor in May and wore the bag for 69 long days.
I know i’ve been blessed to have been diagnosed early (stage II) but am longing to return to what i once considered normal life. I’ve read several blogs all citing long periods of slight incontinence. This is troubling for me as my job requires transglobal travel frequently to Asia. I worry that i won’t be able to.
What did you do to help eleviate the constant urge? What foods helped and what hurt? I know it’s early for me, but am looking for some insight.
Hi Karen! First of all, CONGRATULATIONS on your recent reversal! It’s kind of nice to not have the bag anymore, eh?
I know you’re anxious to be back to normal but you really have to be patient with yourself. At this point, your body is just re-learning what it’s supposed to be doing. To be completely honest with you, for me it was a good 9 months before I felt like my bowels had reached a point where I felt like this was as good as it’s going to get. (And it’s not bad, so don’t worry.)
The initial pain and gas should be pretty much gone within a week or two.
The constant feeling like you’ve got to go may last a good deal longer.
From what I understand, your ultimate level of “normalcy” is really going to depend on how much of your colon was removed. The more that was removed, the looser your stools will be — and the greater the likelihood that you might have some accidents.
You might try exercises to strengthen the anal muscles to help you “hold it” a bit better. To be completely honest with you, though, what I found most useful in the first 6 months after surgery was to keep plenty of baby wipes available in each of my bathrooms and in my purse. The plain fact is that our bowels just don’t work like “normal” person’s anymore. With baby wipes you can always “freshen up” as needed.
Now, a year after my ileostomy reversal, I almost never need to use the baby wipes. You’ll reach that point too, but give yourself time. Your body’s been through a lot!
I think you shouldn’t have any problem with traveling. Just pack a bunch of baby wipes!
Best of luck to you and may you have continued good health!
Hi again, Karen. I just realized you also asked about foods that helped or hurt.
What’s actually been helpful to me is to eat cheese.
I had cut WAY back on cheese because it’s fattening. I have found, though, that some cheese (not a huge amount, of course) has been helpful because it’s slightly constipating.
Since my stools are a bit “looser” than normal (because of the surgery), the constipating effect of cheese seems to help counteract that and makes everything come out in a way that — to me — is closer to normal.
Hi Rebecca,
thanks so much for the words of encouragement. I just didn’t realize how unprepared i was for the long post reversal recovery. I’ve been eating very little and have lost nearly 30 lbs since the onset of this ordeal, not a huge issue since i was already ~60lbs over weight!
anyway, i’ll check back with you from time to time for more insight as i progress down this long path to the final recovery!
thanks for your blog being out here for others to learn from.
Cheers!