Questions about total colectomy

[lookame]

Well doc brought up a total colectomy surgery at our last visit. He said we're looking at stronger treatents since the 6mp isn;t really working. Of coarse everything is based on the evidence the sigmoidoscopy will show and I hope if anything I'll be able to try out remicaid before needing surgery. BUT I would like info beforehand to help make an informed desition if it came down to it.

I'll first tell you my condition and then I'll begin with questions
I was diagnosed at age 23, I'll be 25 this comming Christmas Day. My condition at my last colonoscopy in Aug 2010 was determined to be moderatly severe based on photographic and biopsie evidence, I was also severly anemic and required 2 pints of blood at the time I was hospitalized. I was first treated with a heavy round of antibiotics, steriods and the max dose of lialda. This worked for a couple of months then I began to bleed again and feel pain before passing stool. Then 25 mgs of 6mp was entered into the mix, again it seemed to work but doc wasn't happy with my levels so he bumped it up to 50mgs. At my visit in July I mentioned blood was starting to appear again and he stated I was in remission anyway. Then came the recent appointment, he looked through my blood levels and noticed I'm becoming anemic again even though I take iron daily. With the new evidence and such he's decided to pursue other options based on what he finds in my sigmoidoscopy, the three treament paths he's considering are 1) stay on current treatment(IF my colon lookd like it has improved) 2)give remicaid a try and 3) total colectomy with a jpouch for at least 3 months with the hopes to reconnect the small bowel to the rectum.

Now onto my questions
1) Does everyone get the entire colon removed or do some people get to keep some of their colon?(I know this isn;t an option for me he's told me that my entire colon is in a bad state)
2) Are the bags hard to change?
3) Do the bags smell bad when you change them?
4) Would I require help at times?
5) How long do the bags last?
6) How many times do I need to empty the bag a day/ do they fill quickly?
7) Are the bags noticeable?
8) How much recovery time is there after surgery/ how long will I be in the hospital?
9) Is 3 months recovery really all it takes or is recovery time normally longer?
10) Will I still take my crohns meds with the surgery or would I be medicine free?
11) What are some of the challanges/downfalls to not having a colon? Is it truly a nessessary organ(lol I know it is but what are the "side effects" of not having one?)
12) Is it really harder to conceive after surgery?
13) Is surgery really as scary as I'm thinking it is???? lol

I'm sorry for such a long post I've got a ton on my mind thanks in advance

 

[Nyx]

To try and answer your questions...

1) Does everyone get the entire colon removed or do some people get to keep some of their colon?(I know this isn;t an option for me he's told me that my entire colon is in a bad state)

No, I still have 2/3 of my colon and have a permanent colostomy. It really depends on what's going on in there. They'll take out as much of the diseased bits as they can.

2) Are the bags hard to change?

Like anything, once you get used to it, it's a piece of cake. I find I take much less time in the bathroom now than I did when I had all my bits connected. Just going and emptying your bag takes less time than when you need to change your entire appliance (meaning the bag and the flange that sticks to your skin), but even that only takes about 10 mins once you get a routine down.

3) Do the bags smell bad when you change them?

Well, they smell like poop. They have poop in them after all. So, unless your **** don't stink, they smell (sorry to be so crude, but it is what it is!!). Having said that, they don't smell when you put the bag back on. They're plastic and keep the smell in very well. You can also get bags with charcoal vents in them so that filters out the smell from farts and the output.

4) Would I require help at times?

I only required help when I was in the hospital. I was pretty much self-sufficient in changing my bag after about the second day after my surgery. It's not really rocket science, but again, does take some getting used to. In terms of recovery from the surgery, I had help from my mother because it was a major surgery and I was wiped out from it. I stayed with her for a month (I had complications so my recovery took longer than expected).

5) How long do the bags last?

It depends on what kind of stoma you have. I have a colostomy (which is made of the large intestine) and I can get months out of my bags. I change bags every day, but I wash them out and reuse them. I don't have them covered by insurance, so I can't just use a brand new one every day. I would think that with an ileostomy (which is what you'd have) you may not get as long out of them because the output is fairly liquid...but I could be wrong.

6) How many times do I need to empty the bag a day/ do they fill quickly?

Again, this depends on the person and what kind of stoma you have. From what I've read in the stoma subforum, people with ileostomies tend to empty about 6 - 8 times a day, whereas I only empty 1 or 2 times a day. They can fill very quickly depending on what you're eating/drinking. But it doesn't tend to be a problem.

7) Are the bags noticeable?

If I can find the pic of me in my bathing suit on here, I'll post it for you. You can't even tell where Oscar is (that's my stoma's name).

8) How much recovery time is there after surgery/ how long will I be in the hospital?

I was in hospital for 24 days, but I developed blood clots in my lungs and got a blood infection while I was there, so that's not typical. I think a week is reasonable to expect. Most people that I've talked to have said that it really takes about 3 months to feel 'normal' again. And that was true with me as well. It's a major surgery and it really tires you out.

9) Is 3 months recovery really all it takes or is recovery time normally longer?

Depends on the person, but that seems to be the average recovery time.

10) Will I still take my crohns meds with the surgery or would I be medicine free?

Depends on what your doctor thinks. I had emergency surgery so I was on my meds at the time, but others have been taken off of them before surgery. You'd have to talk to your doctor about that.

11) What are some of the challanges/downfalls to not having a colon? Is it truly a nessessary organ(lol I know it is but what are the "side effects" of not having one?)

The only thing that I can think of is that you can't absorb as many nutrients as when you have part or all of your colon. It also makes your output very liquid. I don't really have experience with that, so hopefully someone else will chime in here...

12) Is it really harder to conceive after surgery?

I'm past wanting kids, so can't answer this one...lol It's not something I asked about.

13) Is surgery really as scary as I'm thinking it is???? lol

Well, yes! Sorry, but it really is. But, it was sooo worth it, for me anyway.

Good luck to you!! I hope this has been helpful

 

[Nyx]

Found the thread!! There are lots of pics of people with their ostomies, in various types of clothing. I'm on the third page, if you're interested...lol

http://www.crohnsforum.com/showthread.php?t=6105&highlight=ostomy+clothing

There's also another thread just started in the stoma subforum of some of us showing our bags off...it's not as scary as one might think...lol

http://www.crohnsforum.com/showthread.php?t=28320

 

[Misty-Eyed]

Hi Melissa. I had a similar op 5 weeks ago apart from I also had my rectum and anus removed. You can find my surgery story here if it helps!
http://www.crohnsforum.com/showthread.php?t=23535


I'll help answer your questions too;

1) Does everyone get the entire colon removed or do some people get to keep some of their colon?(I know this isn;t an option for me he's told me that my entire colon is in a bad state)

Nyx covered this one perfectly!

2) Are the bags hard to change?

No, not really. You'll be taught while you are in hospital and they won't let you leave until you can do it perfectly all by yourself and are confident in doing so. It used to take me about 10 minutes from start to finish but now I can do it in 2! Practice makes perfect.

3) Do the bags smell bad when you change them?

Unlike Nyx, as she has a colostomy, hers probably do smell of poop but I have an ileostomy which is what you'll have if you have all of your colon taken out. In my opinion it doesn't smell like poop. It doesn't smell pleasant but has it's own unique smell. I have mint drops that I put into the bag so when I empty it or change it, it smells very minty lol. Like Nyx said though, once you've put the new bag on, no more smell. The smell doesn't really linger either.

4) Would I require help at times?

With the bag? At the beginning at the hospital you will do while you are learning. I've only had help from my mum once which was in the first week home when I had a shower and changed my bag right after. I suddenly felt very light headed right after I'd taken the bag off and I had to guide her to help me out. Other than that, no. If I have any problems I call the stoma nurse for advice or she gave it to me on her home visits.

5) How long do the bags last?

I change my bags every one or two days. It is very liquid and sometimes the end of the bag which you open to empty gets a little icky after that (you roll the end up though so you only notice it when you empty the bag). Plus I hate the feeling of a wet bag after a long shower so I often change it then. Some people find that after a day the filter in the bag which allows wind to escape (completely in an unnoticeable and odourless way) doesn't work so well after a day.

6) How many times do I need to empty the bag a day/ do they fill quickly?

At the moment for me I empty ine about 3-6 times a day. I do it when I go for a pee though so it's not a massive deal. A kill two birds with one stone deal. I pee more than I empty the bag lol. Some times of the day I get hardly anything coming out and others I get a lot coming out. But you don't even know when it's coming out unless you feel your bag being a bit heavier.

7) Are the bags noticeable?

I've not really ventured out of track suit bottoms yet but I'm pretty confident that it won't be noticeable when I do venture into other clothing. You can get waistbands that help too. To be honest, I'm so careless I wouldn't be surprised if I accidentally forgot to tuck it back in my trousers one day ahah! It wouldn't really bother me though if I did.

8) How much recovery time is there after surgery/ how long will I be in the hospital?

I was in the hospital for 6 days but it could of been 4 if I could of pee'd earlier! I had mine done laproscopically. I think open surgery would be about 10.

9) Is 3 months recovery really all it takes or is recovery time normally longer?

I shall tell you once I get to 3 months! lol

10) Will I still take my crohns meds with the surgery or would I be medicine free?

I'm not sure, really. Do you have any activity in your small intestine that you know of? I've not taken any crohn's meds since my op but I'm due to see my GI next week. So will see what he says.

11) What are some of the challanges/downfalls to not having a colon? Is it truly a nessessary organ(lol I know it is but what are the "side effects" of not having one?)

Getting dehydrated more easily. Needing a slighty higher salt intake. One of the GREAT advantages is never needing to worry about colon cancer though and never needing to eat a high fibre diet to keep your bowels in good working order.

12) Is it really harder to conceive after surgery?

From the knowledge I have, I would assume that once you are fully recovered, you'd have the same issues around conceiving as you do now. Ie, no. I really wouldn't try till you were back in tip top condition though! I think being well from your crohn's would be a bigger issue, which the surgery would help.

13) Is surgery really as scary as I'm thinking it is???? lol

The unknown is scary. Not knowing exactly how you are going to feel when you wake up is scary. It was my first proper op too so I was nervous. The time when I was most scared was when I was laying on the table waiting to be put under. They had be hooked up to a heart monitor though which was bleeping away so I had to calm myself down to stop it going crazy lol. Then they gave me some pain meds before putting me under and I felt GREAT. If it helps, the first few days after my op were a lot better than I was expecting.

DO come and check out the stoma subforum though because I'm sure these answers will probably leave you with a whole load of new ones. I lurked the stoma subforum for months before my op to get insight into life with a bag. It's where all bag related conversation tends to happen! It made me feel a lot better about everything

 

[Terriernut]

Hi Melissa! I'm curious, if you've been diagnosed with Crohns that the Dr was speaking about a J pouch? That is usually for people with UC, not for Crohns. By all means give the Remicade a chance. But, if that doesnt work:

Now onto my questions
1) Does everyone get the entire colon removed or do some people get to keep some of their colon?(I know this isn;t an option for me he's told me that my entire colon is in a bad state)
I've got most of my colon, only the sigmoid has been removed. I still have my anus and rectum, and there is a possibility of a reconnect if I EVER stop flaring!
2) Are the bags hard to change?
Piece of piss, and there are two piece options. Where you snap off the bag to change, and you leave the wafer on. Mine last 4-5 days, and I can change the bag whenever I want.
3) Do the bags smell bad when you change them?
More like when you empty them. Especially if you like Mexican food!
4) Would I require help at times?
Only at the very beginning!! But it's really easy to get the hang of it!
5) How long do the bags last?
You can go two days. But with a two piece system, change bags daily. One piece, two days.
6) How many times do I need to empty the bag a day/ do they fill quickly? You will find it depends on how much you eat. I usually empty when I have to pee anyway.
7) Are the bags noticeable? Only if you've got bad gas! And alot of the bags have filters in them to help with that!
8) How much recovery time is there after surgery/ how long will I be in the hospital? Open surgery is 7-10 days in hospital as standard. Lapro a bit less. Honestly 3 months to feel human again. By 4 to 6 months, you are back to completely normal.
9) Is 3 months recovery really all it takes or is recovery time normally longer? It does take awhile. The abdominal surgeries are one of the most major surgeries you can have. Yes, recovery can be long. And yes, by the end of 3 months you will really start to feel like nothing happened. Do not push it.
10) Will I still take my crohns meds with the surgery or would I be medicine free? You will need to take meds yes. Crohns can affect us from mouth to anus.
11) What are some of the challanges/downfalls to not having a colon? Is it truly a nessessary organ(lol I know it is but what are the "side effects" of not having one?) Vitamin and mineral deficiency, and quickly dehydrating.
12) Is it really harder to conceive after surgery? Too old me! (johnny depp not available either!)
13) Is surgery really as scary as I'm thinking it is???? lol Yes....I was PETRIFIED!!!. But after all is said and done after the proceedure was done...not that bad. I could now go for another lesser surgery and sail through it! (did it with the parastomal hernia surgery...piece of cake!)

 

[lookame]

Hi Melissa! I'm curious, if you've been diagnosed with Crohns that the Dr was speaking about a J pouch? That is usually for people with UC, not for Crohns. By all means give the Remicade a chance. But, if that doesnt work:

This is actually really confusing to me. I was diagnosed in the hospital by a different doctor from the one I have now. My current GI has seen the colonoscopy pictures and such but never got the letter and phone call I got after being released. The letter says my serology 7 and biopsies are crohns positive but my colon appears to be UC. MY only guess is my GI is basing all his steps thinking I have UC. I have given him my disgnosis letter and he made a copy but I guess doesn't beleive it. At this point though I'm confused on my own diagnosis.

If I do require surgery though and he treats it like I have UC when I really have crohns does that ake a differance? I heard crohns patents can't have a j-pouch does anyone know why that is? what is a j-pouch?

 

[Terriernut]

I have Crohns Colitis. All in my colon. But the reason they dont work in Crohns patients is because we get 'pouchitis', the crohns continues to work it's ugly black magic and the j pouch fails with us. Crohns can attack from mouth to anus, so removal of the colon is no cure for us. I'd get a definitive diagnosis if possible before surgery. And confusion by a dr or surgeon is NOT ok in your case or anyone elses. They need to make up their minds. It is a different disease, and before they go removing your entire colon...just saying!

With UC however, colon gone....cured. You need to be SURE before a surgery Melissa, and so does that GI!!!