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Total colectomy w/ reversal: # toilet trips?

C

Christina

My doctors offered me the option (10 months ago) of an anastomosis from my terminal ileum to my rectum. Now they are telling me I need a proctectomy. I am still holding out hope for the reversal and don't want to burn any briodges (i.e., remove the rectum).

I am interested in determining if you have a total colectomy and then rejoin the small intestine to the rectum:

How often does one go to the toilet each day?
Is incontinence a problem?
Anything other negatives I might not anticipate?

Thank you for your input. C-
 
ameslouise

ameslouise

Moderator
Hi Christina - I would be curious to know the answers to those questions myself!

I'm not sure if any of us that hang out in the Stoma Subforum have had that procedure where the small intestine hooks up directly to the rectum. But I know I have read about it in the general forum, so maybe you want to repost your question there as well to see if you get a response from others that have had that procedure.

Good luck! - Amy
 
Terriernut

Terriernut

Moderator
That is such a brilliant question, and I know Welsh Bird was hoping for this surgery at some point. However, i dont think its viable for her anymore.

I'm going to look for the threads on this topic.
 
Terriernut

Terriernut

Moderator
Christina, what does your surgeon say about it? I'm curious about this, as I'm sure alot are. And where exactly is your disease presenting itself? I only have a few issues in the anal area, mostly its just my colon. I have been lucky, very lucky, so far.
 
C

Christina

What my doctors said about the # of trips:

One doctor said ~10 trips a day, another said ~20 - huge discrepancy! That is why I am asking. I have a third opinion coming up tomorrow afternoon. Will report on that when I hear more.

About my disease:

I have CD with presentation in the colon and peri-anal. I developed a peri-anal fistula that abscessed last year.

Subsequently, they told me that removing my colon would remove the "source" of the disease and the peri-anal manifestations would most likely clear up. Then I could plan on a ileo-anal resection.

As such, I had a total colectomy in Jan of this year. I started having diarrhea again in April and more and more symptoms of a flare. In Sept, they discovered that while my original fistula had healed (with the help of a fistulectomy in May), another new one had formed and that there was a significant amount of visible peri-anal activity present.

It was b/c of that finding that they recommended a proctectomy.

Frankly, my logical/reasoning mind agrees with them. I understand that if I just leave it as a rectal stump, there is the chance that the activity will continue and cause me problems. In addition, there is a risk of rectal cancer. Additionally, I would have to be on immuno-suppressing meds indefinitely, etc.

Initially, the plan was to have a resection, but now there are several knocks against that. The first is that with passage of food over the peri-anal regions, my disease might not be manageable (as it was not before). The second is my primary reason for posting. I already empty my bag from 6-10 times a day now. If I have the resection/anastomosis, will I be going more often (in the long term)? And what kind of continence can I expect? I am not sure it is a worthwhile tradeoff if I am going MORE often w/o the bag. Same, I can probably handle.

I know this varies from individual to individual, but I am just looking for some real-life data on the matter.

Thanks for your interest in my concerns. Hope this background info helps put things into context.

Christina
 
Terriernut

Terriernut

Moderator
It does help alot to hear it all. I can only say it seems when it affects us in the peri anal area, due to lack of options, we seem to be 'screwed' as such for reconnection.

We can always hope that there will options in the future for us, however at the present time there doesnt seem to be.

What meds are you on right now to assist? I do have to say, Ive got a colostomy and still go many many times to empty the bag. I just saw my surgeon today and the reversal was mentioned, by me. She just looked at me and said....at this time, you will need to be patient. You'll just end up having it done again on a more permanent level if we rush it. Stan is almost a year old! Dont get me wrong, I love Stan.

But at times I'd like to kill the bastard off. Like for the past two days when I cant get my wafer to stick...AT ALL. But generally speaking, life is soooo much better with Stan I cant usually complain. May I ask, and I'm sorry if this is so personal, why do you want a reconnect so bad with the issues you have? You know, I do understand. I would like a cure first and foremost. I would like to be 'normal'. I would like to be disease free. I would like to be the same attractive person I used to be. I would like to be healthy. It however doesnt seem to be an option at this time for me, and so many others here as well. It is what it is. And you know what, sometimes, it just sucks. But on a day to day basis, I have to say, having a stoma isnt the worst thing that could happen to me. I've seen some bad things happen to lots of others. A stoma isnt really the worst at all. But there are days......
I get it. I cant be a ray of sunshine every day either. But we have to be well first and foremost. And sometimes that means a stoma. And sometimes, that means I can actually have a life without a friggin toilet in sight.
And oh lord...please bless me with a proper ass that has a proper sh£t once a day, and a healthy system...someday. Perhaps my next lifetime?
I wish you well.
Misty
 
C

Christina

Wow, Misty! I like you! You are so real - and right! Frankly, I am tired of people trying to put a good spin on things . . . and while I know that the stoma is what I need, I still don't have to like it, do I?

My situation is a little different than most. My Crohn's never caused me too much pain. When it was bad, it is true I had to go to the b'room often and even missed on many occasions (EMBARASSING). But I didn't feel overwhelmed by it - I accepted it as part of the disease.

I had the colectomy b/c my doctors told me that the fistulas would keep coming and/or get abscessed again and sometime the results would be worse than a brief hospital stint. They told me that, regardless, eventually I would have to have my colon out. So I wasn't really in a desperate moment when I had the surgery - it was planned months ahead. It was the rational thing to do.

The thing is, I don't LOVE my stoma b/c it is a greater hassle to me than the state I was in before. I feel that my day to day quality of life is diminished with it. That is why I cling to the possibility of getting rid of it. However, I realize that for most people the stoma comes as a great relief. So my perspective is a bit different.

Thus, in deciding about the proctectomy, I am forming an equation that accounts for quantitative considerations (what are the odds of cancer, another surgery, etc.) as well as a quality of life tradeoff. That is, are the number of trips with the stoma the same, more, or less than with the resection? Is the leaking/blow outs from the bag better or worse than occasional incontinence? There are more questions, but that is my approach.

Do you have another "angle" to share? I am so open . . . remind me to tell you the time I considered helminth "worm" therapy. Seriously, I did!

BTW You are right: peri-anal and re-connection don't mix well, and my surgeon/doctor had me on "wait" until Sept, but they seriously believed that there was a possibility of resection up until then. And you still have some of your colon left, so you're already in a better state I bet, . . . that's super! I hope the best for you. Please keep me up to date.

Thanks again for "getting me." Nice to meet you. C-


DX: Age 29 (2006)
Meds: azathioprine, rowasa/mesalamine enemas, Cimzia
Current situation: "mini"-fistula, ileostomy, I feel fine, just a bit overwhelmed - what's new? :)
 
Terriernut

Terriernut

Moderator
Christina, may I ask if you have fistulas so bad why they haven't put you on Remicade or Humira?

Pleasure to 'meet' you too! I'm curious what the Dr says this afternoon to you.

Hope it goes well today for you. And as for quality of life issues, if there is something troubling you with your stoma, or your 'gear', you are in the right place for help!
Misty
 
K

Kris

When I had my colon removed, they left me enough of my rectal stump in anticipation of a stoma reversal. I never had Crohns in my anus, but I had it in my rectum. At my 6 month exam, my rectum had greatly improved, but it still wasn't ready for a reversal. The doctor told me that my bathroom trips would be about 6 times a day I think. Is this the same reversal you are asking about? It's and Ileo-rectal right?
 
C

Christina

Actually, I thought until yesterday that it was ileo-anal, but it IS ileo-rectal, not anal. 6 times is reasonable. I could deal with that. Thanks! C-
 
C

Christina

Update: Things just get confusinger and confusinger . . . but Kris (above) just helped me in my new resolve.

Long story short, this 3rd opinion doc totally scoped me and said that he did see some inflammation, but he did not think it was due to Crohn's but due to the surgery. Anyway, he feels not only do I not need a proctectomy, but that an anastomosis was a possibility and that there was even a little bit of sigmoidal colon in there!? Clearly, I need to consult with my surgeon about this part.

If the biopsies he took do not reveal Crohn's activity, I am going to try the anastomosis. If it works great! Super! I hope that is the case. But if it fails, at least I know that I tried. But I am hoping that it will not fail, of course.

I am STILL very interested to hear about # toilet trips, if anybody reads this thread. Current estimates:

My Doctor #1: 8-10/day
My Doctor #2: 20/day
Kris' Doctor: 6/day

Will do more research on ileo-rectal anastomosis, now that I realize that that is the more likely surgical procedure for me.

Thanks everyone, C-
 
K

Kris

I have read that for a while after surgery the bathroom trip #'s are higher. Once the body adjusts, the bathroom trips decrease. Everyone is going to be different too. I was also told that you have the ability to hold it for a bit too. That there isn't a sudden urgency. I'll probably go in to get scoped at my one year mark (February) to see if I am ready for the reversal. My surgeon also said that I may not have Crohn's . It might be Colitis, but there is no way to tell.
 
C

Christina

Ok, went to Healing Well and this is one case I discovered about anastomosis results (not promising to me, but that is his/her case):

"At first up until now, everytime I ate, I would go 5-6 time for an hour and a half, and go overnight 2-3 times an hour and sometimes not making it. Now, as long as I eat the foods I can tolerate, I only go 2-3 times for an half hour and thats it. If I eat the "wrong" foods, I go all at least 8-10 times an hour and am up in the middle of the night going 2-3 times every hour."

This is consistent with one of the doctors' estimates. Shoot!

Eating the "right" foods is an issue for me too, so I understand that this is a variable too. I seriously want to do this surgery just so I can report my results here.

Anyhow, I posted a poll at Healing Well, let's see what they turn up. C-
 
C

Christina

Kris,

I think you are absolutely right. The situation really depends on the person. And I have also heard that it does settle down after a while, so I am counting on that.

That is great news about the ability to "hold it" too.

Looks like we are on the same timeline. I had my colectomy late January of this year.

C-
 
K

Kris

My docs thought the inflamation in my rectum was mainly due to the severe diarrea I had before surgery. My colon was really bad. I got scoped 3 months after surgery and it had improved, but was still bad. 6 months after was much better, but still inflamed. The surgeon wants to wait until there is no inflamation before he reconnects me, and I agree. The healthier the rectum is the easier the body adjusts afterwards. I don't mind waiting, becuase I'm starting a new job soon, and I don't want to leave work for surgery so soon after I start my job. I may have to wait until a year from now. At least my rectum will be healed. If it doesn't heal, the surgeon said I might be able to get a J-pouch instead. If I have Colitis I would be cured. That would be awesome. I just don't want to go through that many more surgeries. Uggghh.
 
bigtruck

bigtruck

Christina said:
Wow, Misty! I like you! You are so real - and right! Frankly, I am tired of people trying to put a good spin on things . . . and while I know that the stoma is what I need, I still don't have to like it, do I?

My situation is a little different than most. My Crohn's never caused me too much pain. When it was bad, it is true I had to go to the b'room often and even missed on many occasions (EMBARASSING). But I didn't feel overwhelmed by it - I accepted it as part of the disease.

I had the colectomy b/c my doctors told me that the fistulas would keep coming and/or get abscessed again and sometime the results would be worse than a brief hospital stint. They told me that, regardless, eventually I would have to have my colon out. So I wasn't really in a desperate moment when I had the surgery - it was planned months ahead. It was the rational thing to do.

The thing is, I don't LOVE my stoma b/c it is a greater hassle to me than the state I was in before. I feel that my day to day quality of life is diminished with it. That is why I cling to the possibility of getting rid of it. However, I realize that for most people the stoma comes as a great relief. So my perspective is a bit different.

Thus, in deciding about the proctectomy, I am forming an equation that accounts for quantitative considerations (what are the odds of cancer, another surgery, etc.) as well as a quality of life tradeoff. That is, are the number of trips with the stoma the same, more, or less than with the resection? Is the leaking/blow outs from the bag better or worse than occasional incontinence? There are more questions, but that is my approach.

Do you have another "angle" to share? I am so open . . . remind me to tell you the time I considered helminth "worm" therapy. Seriously, I did!

BTW You are right: peri-anal and re-connection don't mix well, and my surgeon/doctor had me on "wait" until Sept, but they seriously believed that there was a possibility of resection up until then. And you still have some of your colon left, so you're already in a better state I bet, . . . that's super! I hope the best for you. Please keep me up to date.

Thanks again for "getting me." Nice to meet you. C-


DX: Age 29 (2006)
Meds: azathioprine, rowasa/mesalamine enemas, Cimzia
Current situation: "mini"-fistula, ileostomy, I feel fine, just a bit overwhelmed - what's new? :)
Click to expand...
I'm in exactly the same shape as you. Right now I have a temp ileo that rarely behaves , my tail end disease was liveable before this and I was only having 2-3 motions a day, but this bloody ileo is the bane of my life.
 
K

Kris

Before surgery I was using the toilet 20+ times a day, so when the doc said 6-8 times with the ileo it sounded better.
 
Terriernut

Terriernut

Moderator
Welcome BigTruck!! (I take it you have a truck?)

If it is the bane of your existence, and sometimes MINE is, please, post away and we will do all we can to help!

And Christina....what is the decision???? Inquiring minds want to know!!!!!
 
C

Christina

Hi!

Terriernut, I haven't made a decision yet. :( I am waiting to hear back about the biopsies - a week or so away I guess. If biopsies are negative for Crohn's activity (that is, the inflammation is just plain old proctitis), then I think I will go with the reconnection. I really want to give that a shot. I knda want to do it just so I can report back here! :)

For me, last night was tough - 5 times to the toilet (with the bag). I ate some nuts . . . now I know that I cannot handle that many of them. After that experience, I could not imagine 20+ trips for more than a day or two ever. I am so glad you got some relief, Kris.

Welcome, BigTruck! I so understand. I don't want to be ungrateful, especially b/c I know the bag is a blessing for most, but "bane of my existence" is a very appropriate term. I am trying lately to recognize some of the freedom the bag gives me, but . . .

Here is what I can't get used to the most: The bag bursting/leaking for absolutely no apparent reason. It's the randomness of it that gets to me. As time goes on, I am learning to recognize possible causes, but it's still tough to wake up to a mess in the middle of the night when I didn't do anything wrong.

Oh! And here is something I am so open to comments on: splash! That is what happens when I empty my bag. I have found that putting some toilet paper down first and aiming for the side of the toilet helps. I have also used a diaper genie with some good results (and some bad ones - long story). Any other ideas?

Hope this finds you all well. C-
 
Terriernut

Terriernut

Moderator
Christina,
Splash...Well, think of the bag as a ....um..guy. Scootch back on the toilet seat. Open slowly, remove fingers from out of the way. Think holding a teacup pinky finkers out. (i still have issues with this!) and slowly let loose the ends of the bag. As I have this issue as well, even with a colostomy, you kinda have to aim!

As for the bursting and the middle of the night thing. I have knock wood not had this. Except for during the day! I'll need to know what you are using for a bag, how often you are going, what your output is, etc. Are you having alot of gas for instance. (very bad) Do you know you can burp your bag...and lucky for us...harass all around while doing so? What appliance are you using? Can we help??
 
C

Christina

Yes, I have high output. 8-10 times a day with a 1/3-2/3 full bag. It is very liquidy, most times straight liquid with things floating in it. Not much gas at all (thank goodness!).

I use a 1-piece Convatec with a wide-mouth, velcro enclosure. I also use and love my Eakin ring.

I am wondering if the liquidity of the output compromises the seal? I tried to use crystals once, but it was a mess. Maybe I should try again? Although, the nighttime incidents seemed to be a thicker output (I think both times I had had undigestible foods or something b/c then (!!) the output was quite thick and did not move away from the stoma). However, other times, it is its own liquidy self.

So let me get this straight. The bag has leaked (on multiple occasions)

1) While reaching for something, the pressure must have ruptured the seal (although the bag was not full or anything).
2) While sleeping - both cases the output was thick, not liquidy. I have avoided anything that might not digest well in the evening since then and haven't had that as a problem since September.
3) Sitting (at restaurants or meals, multiple occasions). I don't wear tight clothes at all, but I have a HIGH, HIGH throughput during meals and after. I have been trying to control this by drinking less at the meals with some success.

Emptying: I face the toilet and squat down to approach the toilet. I get as close to the toilet as possible in this position. I can't seem to manage the other way b/c I am large. The tea cup approach is good. I think that describes a skill I have been trying to develop. It is at times messy - the spout of the bag is sometimes wet when I open it - but I will keep trying that.

Thanks for your thoughts!!

C-
 
K

Kris

Wow. You shouldn't be having that many acidents and I don't think your output should be so liquidy. I drank Metamucil after surgery and it really helped my output to thicken up. It's a fiber drink, but it thickens the liquid. It's not too thick though.I would try a different system too. Possibly a two piece system, so you can change your bag everyday. I really like Hollister two piece with a filter. I've only had one leak underneath my wafer since surgery.
 
glum chump

glum chump

Hi Christina:

I'll chime in with my three cents. Unlike you, I was pretty bad before my surgery (20+ bathroom trips), and went for a permanent ileostomy because everyone told me how much better life would be since I would only need to empty my bag 4-6 times a day. Well. That didn't happen! Like you, I'm emptying the bloody thing 10+ times a day, and with the leaks and blowouts, I remember feeling so upset and frustrated that I'd permanently roped myself in to this lifestyle.

Fast forward: its been about three months since my freakout ("I can't believe I have this stupid piece of turtleneck s!$t sticking out of my belly---I hate it"). I have not had any blowouts, and no leaks. Although I'm still emptying my bag about 8-9 times a day, I'm in a much better place around it. One thing I did was to change appliances---I switched from Hollister to Coloplast 2-piece and that really changed things up. I change every four-to-five days. I use the Eakin seal as well. It's too bad you're not able to sit on the toilet and empty---it makes things much easier.

My blowouts happened late at night and it was very thick output. I think that because I was sleeping on my back, coupled with eating stuff that didn't digest well, created a 'backup' at my stoma site. Basically, the thick output collected at the top of my bag, wasn't going down, and bammo!, some really bad blowouts. Two nights in a row. Annoying. I eat a much lighter meal for dinner now, and save my high fibre ways for lunch.

With my leaks and blowouts, the nurse had suggested drinking less water (I was drinking about 3 litres at the time), and had me try a different product. I'm wondering if you've tried other products and whether they've given you a rough time as well?

I'll try to think about some other things I did that helped me...

Kismet
 
C

Christina

This is all very helpful. Glumchump, I think my nightime experiences are very similar.

I will go see my WOC nurse as soon as possible and discuss options. I would really like to consider a 2-piece (that didn't work for me initially, but it is worth a revisit, I think).

I will also try the fiber supplement. I used one before the surgery, but had been avoiding it b/c of the word "fiber" after the surgery.

Thank you all for all your input. I will try the things you mentioned and get back to you. Also, will let you know surgery decision once it is made (or near to being made). C-
 
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