Ileostomy Reversal - Questions about Colon Function and Bowel Control

Hi, I had a stroke in August of 2011 and soon after they found a tumor in my large colon. Upon having it removed, I was left with an ileostomy and annoyingly very little support after the first time I needed to change my pouch (so all my "knowledge" is self-taught from trial and error and blogs online and such, so apologies if I use a wrong term).

I was due to have my reversal in May, but I was also awaiting a heart operation and that had to take priority at the time. Now I'm recovered and seeing my stoma surgeon in July, and hopefully going to get another date sorted for the reversal.

Now, as I said, I haven't been given any real information upon all of this, but I was told I have about a third of my large colon left intact and was hoping to find out from more knowledgeable people how it all works. Obviously, they will have to go in the original site and cut my stomach open again (yay), but is the colon attached to my rectum and as such doesn't currently affect the consistency of my fecal output (as no matter what I eat or drink or tablets I take, it's nearly all water)? And I am worried massively about bowel control. I mean, I can go out and hopefully work with the pouch, so why risk that if I'm always going to be worried about bowel control? Or will the "last third of my colon" help with the consistency?

The only reason I ask is because I was told they haven't made a J-pouch for me, and they needed to give, what's left of, my colon time to heal properly (hence giving me the stoma in the first place).

I hope this makes sense to people as I've had a total of 3 strokes since the cancer, and I do find my writing skills have become appalling, as is my spelling and such.

Many thanks for any help here.

Hello Peter, and welcome.

I had experiences a lot like yours when it came to care after my initial surgery. Thank heaven for a sister that had been a nurse for 25 years on a surgical floor.
I had a reversal in February of 2012 and I have about 50% of my large intestine left.

If I understand you correctly, you are worried about the consistency of your output after the reversal of your ileostomy. I too had very loose output while I had a bag. Keep in mind that it's your large intestine that is largely responsible for absorbing all that liquid and since yours wasn't hooked up, you passed a lot of it into the bag. That is why you must be very careful about becoming dehydrated while you have an ileostomy. Some folks find the various sports drinks helpful.
Yes, I was on handfuls of Imodium daily and like you, nothing seemed to work. Once I was reconnected, after a few weeks of flip-flopping between stool like water one day, to constipated the next, things have really leveled out. I had no accidents, and now even though the urges seem to come on suddenly, I still have time to make it to the facilities.
Yes, for me, they did have to cut me open again to reconnect things, so don't be surprised if that's the case for you as well. There are a few people on this site that have had a reversal laparoscopically, but be prepared for the worst case. They had to open me up to repair lots of adhesions and scar tissue that had formed from my large intestine being inactive for so long. (9 months).
I was hospitalized for about a week and a half following my reversal. The cardinal rule is you won't be discharged until your bowels move at least gas. They have to be sure you are working again, otherwise you risk getting very ill.

I had posted my daily journal of my hospital stay following my reversal starting here:

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=4255 postdays=0 postorder= start=105

You may find it helpful.

Ask anything you think of. There is no such thing as a stupid question, as a lot of us were like you once, feeling isolated from help and teaching. There are so many wonderful folks here with lots to offer in guidance or even just a shoulder to lean on.

P.S. Don't worry about your spelling or anything like that. For starters, you do better than some of us that haven't had a stroke, and secondly, you have bigger things to worry about than who picks on your spelling. Work on you, get strong for the surgery. The rest is just details.

Welcome to the site and keep us posted on your progress.

Cheers!

Third time typing this as my message keeps disappearing...guess they don't have the cut and paste glitch fixed on the forums yet...

Anyway, I forgot to post earlier, in the words of my friend and fellow ostomate Darla....

"Don't forget baby wipes and Calmoseptine or Sudocreme and perhaps sneaking in a roll of extra soft TP..Hospital grade is usually equal to about a #10 grit.."

I recommend getting a supply of these before surgery to have on hand. The first two are like diaper rash creams. All modesty aside here, it's about comfort.

You won't be up to shopping too much right after surgery, and they can be a godsend if you have frequent BMs post-op, which is almost a guarantee.

Dave, may I just thank you for all that information. I'm planning on reading your journal in a second, and I'm just really worried about having no bowel control due to the consistency post-op. Although now I have a bag, it's not the end of the world (I'm alive, so it's a very small price to pay for that privilege), and I've only had 1 accident with my bag (one of my first nights home after the initial op, gas buildup made my bag pop off my stomach and contents spilled everywhere. As you can imagine, it wasn't pleasant for me or my girlfriend).

The baby wire and Sudocrem idea is a bloody great bit of info, I must admit. I wouldn't ever have thought about that.

Due to my underlying heart condition, I'm on a cocktail of drugs, and one of these is ramipril, which is an ACE inhibitor. As such, a side effect is diarrhea, and no one had the inclination to tell me this. But upon reading the info in the packet yesterday, I plan on discussing other versions of options with my doctor, as I'm going to be on ramipril for the rest of my life.

I'm just hoping the reversal goes better than the original op. Upon leaving ICU and being moved onto the ward, they threw me onto the ward bed and overshot me, and I flew out of the bed onto the floor face down (and not knowing I had a stoma or what it was, I was totally in shock, not just from the obvious pain but from finding out in that way).

Thank you for all the kind words, my friend. It means a lot, and I hope you're a lot better now after your reversal.

Many thanks.

Hi Peter!

I am the infamous friend and fellow ostomate which Dave referred to in his prior post. He is right on the money.....it is all about comfort and protection after a reversal and the creams and wipes will be a godsend when you are "sitting on the throne" once again! I had people bringing me softer TP, too, after I found out that the "one ply" was sandpaper in disguise!

As for your output afterwards....that will depend on how much large intestine and/or rectum you have left afterwards. In my case, I have NO large intestine left but I do have about 10 inches of rectum (don't you just love talking about these things!) so my surgeon sewed my small intestine to that 10 inches of rectum and that's what I deal with from an output standpoint. Without lots of medication, I would have about 18-20 runny BMs per day....but, my regimen of Lomotil, Metamucil pills, and Tincture of Opium slows it down and bulks it up to where I am now down to about 7-9 BMs per day. The Metamucil pills actually bulk things up so they are MUCH more controllable along with the other 2 meds which slow down the intestines. I have only had ONE accident since coming home from the hospital in early February.....I was on a trip, had something alcoholic to drink without eating anything, and was "experimenting" with cutting down on the Opium Tincture and the fiber pills. I do not advise experimenting with your lifeline meds whilst on a pleasure trip! I took a nap and when I awoke I stood up to a not-so-nice surprise! That'll teach me! But, other than that one accident, things have been very manageable....I had my reversal on Feb. 1 and my recovery has been both steady and consistent. I am very blessed to be here today to tell you about my adventures in the land o' reversals!

I was VERY scared and nervous about bowel control afterwards. I had an ileostomy and had very high liquid output for the 14 months I had the bag. But, as you see, there are meds out there that you can take to help slow down the output, and fiber you can take to bulk it up. It's weird on the Metamucil thing....you would think that since it is marketed as a laxative, it would make us "go" more....but, it actually has kind of an opposite effect on someone like me who has no large intestine. Weird science, indeed.

Best wishes to you as you attempt to get another reversal date in order. I'll keep you in my thoughts and prayers. Please keep us posted.

Blessings!
Darla

Words of Encouragement from Ostomy Advocates I Hollister

Thanks for all the kind words and suggestions, I found out that my Ramipril was double my regular dosage and its main side effect was runny BM, just my luck that one of my "life long" meds would cause such an issue (I had 2 valves in my heart replaced 6 weeks ago tomorrow and am on Warfarin as well as Ramipril to help stop me having more strokes). I've had 3 strokes in total and I hope not to have any more because apart from some slight weakening of my left arm and leg and all of my childhood memories getting "mislayed" in my head, I've had no other issues from that.

Most of the time I tend to get a sorta paste type BM which, although would probably be manageable, I worry it will be hard to deal with. Before my cancer and since birth, I wouldn't have a BM more than once a month (I had a very large bowel which I'm hoping bodes well for me when it comes to reconnecting me up as they said I have a third of it left and don't need a J pouch).

But it's more the concern of "better the devil you know" and do I keep the bag for the rest of my life or do I risk it for the chance to have a relatively "normal" life (personally I've given so much of my life so far to get as healthy as I am atm, especially after being off from work for the last 4 years, I think it's worth the risk).

Thank you both again for all the kind words and support.

Sorry for the double post, but I have a few other questions that came up.
The last few days I've been having what I'd call "phantom bowel movements" (the muscles seem to want to work and feel like they are holding back diarrhea or loose stool, but sadly nothing's coming out, so I presume it's normal or should I be worried? I had the ileostomy in September 2011, so I don't know if it's been too long or if this is a good/bad sign?
Also, I was wondering what people's experiences after the reversal with diet are. Can you go back to eating pre-ileostomy (like a decent portion of food), or are you still having to "snack" like when you had your stoma?
Also, when I wake up 90% of the time after cleaning my bag from the night's activities and during and after breakfast, I get a mucus substance filling my bag up quite a bit. Is this normal, and does this slow down at all after the reversal?
Sorry for all the questions, and I realize each person's situation is unique, but I'm just after some feedback if possible. Cheers, guys and gals. Much love in advance.

Hi Peter.
I had my bag for nine months and it wasn't unusual for me to feel the urge to have a BM now and then even as I neared the 9-month mark. I asked my surgeon, and he said it was totally normal, and in fact, a good sign. He told me that it meant that even though that part of my body hadn't had to work in months, it still remembered how.
I also believe that others here will tell you that even some that have a permanent ostomy still experience this sensation for a long time afterward. Again, if I am not mistaken, the lower part of your bowel and rectum will still be producing mucus that is normally there to assist in having a BM, so if that builds up, it can give you the sensation that you need to go.
Sure hope someone can back me up on this.
As far as diet, after reading so many posts here about post-reversal eating, I asked him about it before I was discharged. He said "you can eat whatever you want, but take it easy at first". What he meant was, and I found out the hard way, was eating a big meal right away can be uncomfortable. I did it once or twice and became very sick to my stomach. I didn't vomit, but felt as though I might. Your body has had to act differently for some time, getting used to a different diet and different eating habits. You can't just go back to your old ways overnight sometimes. I began by eating several smaller meals a day, and when I felt the hunger pangs in between, I grazed. Maybe some salad, fruit, a piece of toast. Just to take the edge off. It's been almost 4 months since my reversal, and although I would say that for the most part, my eating patterns have gone back to normal, I still can't really eat too heavy a meal without feeling uncomfortable rather quickly. All things in moderation.

When I experienced a lot of loose movements in the weeks after surgery, I asked my doctor about it. He just repeated what he had told me before. That part of my digestive system was dormant for a long time, and it will take time for it to regulate itself again. For some people, it may be just a few weeks, for some, maybe a year or more. He suggested that if I felt my movements were loose more often than not, that Imodium with my meals was certainly allowed, just not to the extent I was taking it with the bag.
Be prepared for swings between loose and constipated for the first while. It isn't unusual, just annoying.

I had no restrictions concerning what food I ate. I just know my body and even from the way I was before my ostomy, some things go right through me

As far as the mucus you say you experience in the mornings, I had that sometimes too. I asked my sister, who has been a surgical nurse for over 25 years about it. She explained that even when not eating, my stomach and upper digestive system were still producing and releasing digestive juices to help break down food. She said that what I was seeing was just a lot of that since I had nothing else on my stomach after not eating all night.
I think that this is probably normally produced in anyone, but having a bag gives you the chance to see it, whereas someone without a bag wouldn't even notice it since it stayed in the digestive tract and was used in other ways.

Having said all that, I am not a medical professional, and if you are really concerned, see your doctor, surgeon, or ostomy specialist if you have one. The hospital here had its own department dedicated to teaching and working specifically with ostomy patients. They did hospital visits for teaching new patients and offered consult visits even after release.

If anyone else can confirm or differ with what I have said, please speak up. The last thing I want to do is mislead anyone.

One last thing, Peter. Please don't apologize for asking questions. Many of us here know exactly where you are when it comes to feeling lost and uninformed. It's one of the many reasons sites like this have come to exist. We have all been through some wild rides and as you know with a bag and being in the hospital, modesty isn't a worry for most of us anymore when it comes to this subject so near and dear to us all.

Don't hesitate to ask something just because you don't think you know how to ask it "politely". We have heard it all before.

You poop in a bag, my friend. I did too.

There, see, wasn't that easy?..lol

Take care of yourself and keep us posted.

Cheers!

Thanks for the advice, Dave. It really means a lot to me. Many thanks and hope you're well.

You poop in a bag, my friend. I did too.

Love it

The more blogs I'm reading, the easier I feel about having the reversal. I'm just worried I'll be living on the toilet for months/years after the reversal. I'm just hoping that whatever's left of my plumbing internally will harden up the nearly constant flow of liquid I seem to be getting of late. I didn't eat on purpose for 6 hours the other day, missing 2 meals, but had custard and a very sauce-heavy pasta dish, and it made it nearly perfect. I was so amazed at how weird my body can be.

After reading everyone's feedback about an ileostomy reversal, I am feeling very positive for my operation in August. My main concern is recovery time and dealing with my BMs. But, I suppose having the same mindset as dealing with an ileostomy bag will help me get through. The doctors are only diverting my plumbing. Hopefully, all will go well for everyone, but we will always have good and bad days. We are strong peeps on our journey, we know we could carry on from strength to strength. Good luck!

Saw my surgeon today, he's scheduling me for my reversal in September/October timeframe, only because I had a heart operation a few months ago and he wants 4-5 months between surgeries for some reason.
He did an exam of my back passage today and said all looks hopeful, and apparently he won't need to cut as high this time for the reversal as all he's doing is replugging my stoma back to rectum (well, I presume that's what he meant).
I am curious as to what they will be doing with me 4 days prior to surgery (I was told I need to go into the hospital 4 days before the operation to get me off warfarin which I'm on for my heart), but I'm curious if it's just to connect me to heparin or if it's to do some exams of my innards or something.
Has anyone had any experience in this or any ideas about it?
Also, after the reversal, how do you know the difference between a BM and passing wind (yes, it may sound stupid), but I'm generally quite gassy regardless of diet for some reason and I tend to have to empty my bag at least once or twice a day due to gas alone, let alone the normal reasons for opening the bag.
Cheers guys/gals