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Problems with Ileostomy reversal

newmanp
Posts: 2
Joined: Feb 2012

I had my ileostomy reversed in December after 7 months. I am having problems with pain/burning/urgency to go/leakage. Having more bad days than good. Maybe it is too soon but nothing seems to be helping. I have tried numerous creams. nothing is stopping the burning. I do sitz baths which help but I have to do several a night. Dr doesnt want to give pain meds. He did say that I could have a Colostomy. Was wondering if that might be worth it. I didnt have any probles with the ileostomy and wanted to know from people who have the colostomy, how is it to live with. I liked the idea of not having the bag but not sure it is worth it now. I dont want to go thru this for a year and still end up have the colostomy.

Thanks for your thoughts.

Paula

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hi Paula,

I did not have to have a ileostomy or any reversal so I am probably not on the same page as you but I did have severe burns after radiation and what to me seemed like pure acid bm's. I did the multiple baths aday, even sat on ice cubes several days until my radiologist told me that was a big no no because can cause skin damage. What actually helped me was Baby Desitin cream...sounds crazy but the Zink seemed to protect me more when stools were burning and fast coming all day long. Of course, I used Aquaphor sometimes but still swear by Desitin. I tried all the prescriptions and they didn't help at all...Desitin ointment/cream. Once you get it on, hard to remove but I think that is why it helped. Cannot be used if you are undergoing radiation. Good luck and prayers to you my friend.

~Minnesotagirl

Annabelle41415's picture
Annabelle41415
Posts: 4565
Joined: Feb 2009

My goodness you had this done two months ago, please don't rush it. For some, this is a process of trying to get back to normal. It's frustrating as you want your plumbing to go back to what it was before. Some get it back while others don't but it is still manageable. Going 25 to 35 times a day was a normal for me for about nine months and then it would tapper down to about 20-25. The butt hurt so bad I'd cry because it throbbed from pain. Try Calmoseptine cream (behind the counter but no prescription needed). Sometimes taking Ibuprofin can help a good deal. If you don't need or want the bag, give it some more time. I'm two years from reversal and I'm finally able to go places and mostly have my bowels trained to go at night while I'm in for the night. Sure if I'm going to go some place in the evening, I'll have to sacrifice not eating for the day, but almost always I'll be able to attend the function and maybe not all of it, but at least not missing as much anymore. If you need any other concerns answered, please don't hesitate to ask. I've been there, and it is getting better.

Kim

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Hi Paula,
Wow tough choice you have to make. I would say wait as long as you can to give it as much time as your Dr. says for healing. I am in an ostomy support group with a lot of people who have suffered with croan's and colitis. They welcomed their ostomy's because of the type of pain and suffering your going through.
I live with a permanent colostomy. I can't say it's never a problem but other than vanity it's nothing to difficult to deal with. You have already had an ostomy so you know the ropes already. Theres not much difference from the illiostomy other than texure of output, less liquid.
I wish you luck, feel free to im me if you want to discuss it further.
Tom

NWGirl
Posts: 124
Joined: Jan 2008

Annabelle is right, at 2 months post surgery your body is still adjusting - it should get better. How much better remains to be seen. Here are some things I did that helped me -

1) I saw a Naturopath who did a blood test on me and determined I had an intolerance to dairy. Not an 'allergy' but an 'intolerance'. I gave up dairy completely and it helped a lot with the burning sensation and the frequency.

2) I got a copy of the MD Anderson Bowel Management Program - here's a link - http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=34
There is a lot of good information here - especially on how to incorporate soluble fiber (Metamucil, Citrucel for example) into your diet to help slow down and firm up your stools.

3) As for creams, Calmoseptine worked the best when I felt I could leave it on there for awhile. It is gunky - which is great to help heal up raw skin, but if you're having a frequency problem - then I found A&D or plain old Vaseline to be better. The thinner creams were nice in that they afforded me some protection when wiping/cleaning up. I have to warn you, all of these can kind of stain your clothing when you use them as much as I did, so you could consider wearing a thin pad on the back of your underwear if this is a concern.

4) Pain meds - nothing helped - not even my heavy duty narcotics from my surgeries. When things got really bad at night, I found myself grabbing a glass of wine and popping an oxi just to knock myself out so I could sleep. But for pain - it did nothing. This is a slippery slope - so be careful.

5) Buy really good TP - extra, extra, extra soft. Some people use baby wipes, but since we're on septic and I didn't want to flush them, I'd just use slightly wet (extra, extra soft) TP. If you're on a septic system, you may find you have to have it pumped more frequently as the heavy duty TP doesn't break down as quickly - plus you're using so much more of it.

6) Strangely enough, food, for the most part, didn't make a huge difference on what happened with my bathroom issues. I did avoid ****y foods and very acidic foods (pickles for example) because they burned coming out. For a lot of people there are definitely foods that don't agree with them - it's a real trial and error thing.

Those are most of my tricks. I got down to an average of 10 a day; but then my cancer returned and I had to go back on chemo 'for life'. I finally decided to throw in the towel and opted for a permanent colostomy - but I lived with the take down surgery for almost 3 years. If I hadn't gone back on chemo (potentially forever), I probably would have just dealt with the 10X a day (more on a bad day which happened at least once a week). But adding chemo to the mix made my life pure hell, despite all I did to manage my bathroom problems.

The colostomy has been wonderful - it really gave me my life back. I can do anything I want now without having to deal with the bathroom nightmares. I have no regrets about opting for a permanent colostomy because I know I tried everything I could possibly think of to make things work - including time. You're really early in your recovery - you still have time on your side and many things to try before deciding whether you should consider an ostomy.

newmanp
Posts: 2
Joined: Feb 2012

I can see now that I am not giving it enough time. I am just depressed that I am back where I started when I was first diagnosed with the cancer. I went through a lot to get to this point in time. I believe my problem is that I am waiting for things to go back to the way they were instead of managing my condition. Thank you for your thoughts and I hope your new round of chemo works.

Lovekitties's picture
Lovekitties
Posts: 3239
Joined: Jan 2010

It seems a bit early to consider additional surgery.

Your post was mostly about the discomfort and what the doc is or is not doing for you. From what I have read from other posts the symptoms have to do with the consistancy of the output. Has your doctor suggested any ways for you to bulk up the output? I specifically ask about the doctor because with surgery so recent he may have some legit reservations about bulking, but it would not hurt to ask.

Most folks on here have referred to the BRAT diet...which stands for bananas, white rice, apple sauce and toast....all of which naturally bulk up the output. Others have found they have to use over the counter products.

I have had a colostomy for nearly 2 years now. Life can still be good if you have to have one. If it gets to the point where that is definately on your to do list, chime back in and there are a number of us who will be glad to help you with your questions and make suggestions about prior to surgery.

Others have done reversals. Overall success with retraining has been different for each person as has the amount of time it takes.

Keep posting and we will try to help with answers and most of all with encouragement.

Marie who loves kitties

John23's picture
John23
Posts: 2094
Joined: Jan 2007

Re:
"I didnt have any probles with the ileostomy and wanted to know
from people who have the colostomy,"

I can't imagine -not- having problems with the Ileo, since some
of the inherent problems include:
1. Acid output burning the peristomal skin
2. Continual problems with dehydration/staying hydrated
3. Excessive liquid output and frequent emptying of the pouch.
(just to list a few)

(I have an ileo; never had a colo)

With a Colostomy, the output is generally not as acidic, since
the colon's job is to neutralize the acid.... And staying hydrated
is easier, since the colon does the extra amount of absorption
of the waste in the colon.... The emptying isn't nearly as frequent,
and can be timed fairly accurately.... And... you can usually
make use of a technique called "irrigation", where you flush the
contents out, rather than wait for it to fill a pouch. That enables
you to do without a pouch when the need arises (for short
periods of time)

You should discuss in depth with your surgeon, just how much
of each intestine remains. If there's just a very short amount of
large intestine, the output will be more acidic and watery and
may prevent the usage of the "irrigation" procedure. If the amount
of small intestine has been shortened, the output will be faster
and watery, and difficult to control.

That aside....

One thing you should make sure of, is that the stoma is placed
where it is best for -you-. The surgeon should have a special nurse
that is trained in ostomy procedures (called a: WOCN), work with
you to locate the very best spot for the stoma.

Usually, it's placed by the "4x4" rule; 4" below the waistline,
and 4" to the side of your middle (navel). That will usually allow
the patient to wear their normal clothing over the ostomy appliances
without interfering with the appliance or presenting a noticeable
"bulge" under one's clothing. (mileage will vary)

The choice between a colostomy or ileostomy shouldn't be
all that difficult. Most of us have never been provided a choice!
But after having an Ileo since 2006, and after talking to as many
Colostomates as I have, I certainly would have opted for a
colostomy had I been given that chance....

Either one, make sure it's placed where it's best for -you-.

Best of health,

John

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

There is lots and lots of good input here. Here are my two cents:
Time.
It takes t-i-m-e to relearn how to go. I had an ileo (10/09) for a year, then reversed a year later (10/10) and it took a good solid year to FINALLY figure out what works for me--and even now and then there are still challenges.
Pain Relief.
You might consider telling the Dr. that you want some strong meds for the times when the pain is unbearable (no need to suffer). For me, I would take 1-2 strong pain meds, put some ice in a ziploc, wrap it a wash cloth and put it between my legs.
Diet.
Salads and other fresh green go straight through me, so if that's what I choose to eat, I have to be prepared. Same with red wine. What really helped regulate me were probiotic supplements, and a multivitamin. Between those two I've got a system almost down.
Tricks.
Destin is a wonder drug...so incredibly soothing with the pain and resulting irritation. Popping 1-2 Immodiums before going out on the town (along with a panty liner) gives me some peace of mind, and then the next day taking Miralax or something to get things moving again.
Backing up a bit, you said you were only two months out from surgery. Well, two months after my takedown I was wearing Depends at night.
It's hard isn't it? but I know it can be done because I did it. And so can you. Give it some time and be easy with yourself.
Hang in there~

Moesimo's picture
Moesimo
Posts: 1079
Joined: Aug 2003

I agree with the others in that it is way too early to make a decision for a colostomy. I was where you were a few years ago. You need to give your body a chance to heal.

BUT, I made that very tough decision after spending 18 mos. in the bathroom or looking for one. I also spent alot of time in the bathtub - several hours a day, all while working full time. It was the only thing that helped me. And dilaudid.

So in Jan. 2005 I had a colostomy done. I havent looked back. It is much easier to manage than the ileostomy that I had had. I now irrigate daily and that almost eliminates the need to empty at all.

It gave me my life back. Any questions just ask.

Good luck.

Maureen

crweaver
Posts: 1
Joined: Jul 2016

OMG! I had my reversal surgery in may 2016 and have cried everyday since with the pain, I have had 2 colonscopy since May the doctor just looks at me when I complain of the pain the burning and the so frequent bowel movements, I had a colonscopy just yesterday I was crying in pain I was already sore before, My doctor refuses to give me any drugs for pain he says take Advill I think he owns stock in Advill I take like 10 or more of them a day nothing helps with the pain, I'm a single mother going to the grocery store is a very hard task, my daughter and I went to Kroger on Sunday and I had 7 bathroom visists while we did very little shopping. I wear pads, take extra clothes in my purse and somtimes its very painfully just to walk. I also think vaseline feels the best, my doctor said not to use it. cus I should be using water base products not oil based.?

 

ellend
Posts: 39
Joined: Apr 2016

During radiation therapy the nurses recommended Domeboro soaks and Aquaphor (which is water based). They also gave me a prescription for lidocaine cream to mix with the aquaphor that seemed to help. The radiation oncologist also wrote a prescription for suppositories that had cortisone. Domeboro and Aquaphor do not require prescriptions, unfortunately, the lidocaine cream does.

ellend
Posts: 39
Joined: Apr 2016

The surgeon expects to reverse my iliostomy later this year when I'm done with adjuvant chemo and my body has had time to recover.

The surgery was originally scheduled earlier because I had so many problems with the iliostomy, but those seemed to have settled down. Early on, I had to change the wafer almost every day and sometimes more than once a day due to leakage. I was also getting output from around the stoma as well as through the stoma. I would prefer not having to get a permanent colostomy, but that might be preferable to the problems people here have been experienced.

So the question is, has anyone had a reasonably good experience after their iliostomy has been reversed? I am not looking forward to having to be tied to being close to toilet facilities. It is bad enough with the iliostomy and having to empty the bag frequently.

Ellen

danker's picture
danker
Posts: 990
Joined: Apr 2012

After 6 weeks with the ilio bag I had a reversal to the 1/3 size rectum.  I developed a fistula with the colon attaching itself to the stoma site.  Thus more time with bag.  Over time, about 5 weeks, the fistula quit leaking.  Upon seeing the Dr. she said it healed itself from the inside,thus requiring no action.  My colonoscopy 9 moths later showed NED. Been Ned ever since,over six years!!!  Main side effectis occasional diarrhea.  Not nearly as often as at begining.   Was able to control it with LOMOTIL. So life is pretty normal.  I assume that I am one of the lucky ones. LOL Best of luck to you!  Try RADIAGEL, available at wallmart, for bun burn. It sure worked for me!

DD3's picture
DD3
Posts: 119
Joined: May 2013

wife had her reversal after having "tempy" (nick name for her illiostomy) for 7 months.   Talking to people who have had reversals done.. seems everyone is a bit different afterwards.  My wife.... I will tell you the three months were tough in regards to control.  Didn't seem to matter what she ate or if she took fiber and etc.  Just seems her plumbing was off.  I will tell you it got better.  Slowly.  We are about 3 years out and she is what I believe at her new normal.  Managable.  But, definitely different.  There are days she doesn't "go" at all... And then a "purge" hits.  Although not to get too graphic (its at least solid now).  Okay TMI.  We are able to enjoy a happy active life. 

The surgeon is at a lost as to why she isn't back to normal again.  Anyways, I will say be patient, very patient.  Everyone recovers differently. 

 

John23's picture
John23
Posts: 2094
Joined: Jan 2007

Ileo... **** This is a 2012 Thread ****

If her output is "solid" with her Ileostomy, she's probably dehydrated.

When they give you an Ileostomy, they resect the colon. With the colon disconnected, they yank a section of the small intestine out and form a stoma. The output is normally liquid, and uncontrolled. When they made the cut between the small intestine and large intestine, they removed the Ileocecal valve (since it's part of the colon). The valve does two things: 1: Prevents "stuff" from going backwards from the large intestine back into the small intestine, preventing bacterial contamination, and 2: The valve helps control the speed of the flow. If the body senses a need for more absorption (hydration, nutrition, mineral), the valve will respond by slowing the flow. (neat, huh?).

So Ileostomy output is liquid (like soup, heavy gravy) (I'm  gonna' puke), and there's not much you can or should do about it, since that's the way it is inside the small intestine at that point in the body for perfectly normal people. Most of the liquid is usually absorbed in the small intestine, and the large intestine absorbs the balance. The food product can't be "stored" in the small intestine, while the large intestine is designed to "store" it until you decide to defecate. So..... If you ingest a large amount of liquid, it will pass through quickly; there's nothing to hold it back. Yes, any opiate derivative can slow things down. My gastro doc prescribed one specifically for digestive matters, but I had to use the maximum and it caused me major problems, even to just walk. I found that a VERY minimum of hydrocodone works better and had no side effects. It's best to steer clear of any of that stuff and regulate what you're stuffing in your mouth. Safer, easier, and who doesn't like a diet of cannolis?

Sugar can play hell with the system. Especially that "high fructose" garbage. Don't avoid sugar (your body requires glucose to survive), but don't drink soda or fruit juice, or any sweetened beverage and expect to have a normal Ostomate's day. When you have an Ileostomy, sweetened liquids is like putting your intestine on steroids.

And with an Ileostomy, you should avoid drinking with your meal. Didn't the physician tell you any of this? Did he go to Trump U for his degree?

Anyway......

You can get  more info at the UOAA website! Well worth a look!

Stay well,

John

 

UncleBuddy
Posts: 1001
Joined: Aug 2013

It took my brother at least a good year to get back to some semblance of normal. he was never really back to where he was, but it was tolerable for him. He used Depends just in case. As someone on the boards told me, Depends becomes your friend.

Trubrit's picture
Trubrit
Posts: 2934
Joined: Jan 2013

As someone on the boards told me, Depends becomes your friend.

That was me <*** src="http://csn.cancer.org/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/emotions/***/smiley-sealed****" alt="Sealed" title="Sealed" border="0" />!

People laugh when they talk about Depends and I am the first to tell them how absolutley thankful I was that I had them. It usually shuts people up.  My moto 'Depends are your friends'. 

beaumontdave's picture
beaumontdave
Posts: 402
Joined: Aug 2013

Didn't have an ostomy, no operations got near my tailpipe and yet having a good seal was an issue for quite a while. I felt stuck in HomeDepot once after a minor spotting, had to work with a jacket tied around my waist the rest of the day. Very annoying. Here there is no TMI......................................Dave

BillO60
Posts: 65
Joined: Mar 2015

I'm on my 2nd ileostomy.  First was 40 years ago and had it for 10 months and then it was reversed.  Along with the reversal came bile acid diarrhea that caused frequent and urgent runs to the bathroom, burning, and cramps.   No changes in eating habits helped. Took a year before I found a doctor that prescribed Questran (Cholestryarmine is the generic name) and that resolved the problem in less than 24 hours.  It wasn't a cure and it didn't get rid of all of the symptoms but it did make it more manageable.

Before I knew I had colo-rectal cancer I started having the same symptoms that I'd had before I started the Questran.  Urgency and cramping were the worst part and I went from going 1 to 3 times a day to over 10 times a day.  Once I was diagnosed I was started on radiation and capcetibine (oral chemo) and I was pretty much living in the bathroom.   I quit counting after 25 trips and this was 24 hours a day so I wasn't getting more than an hour or two of sleep a night. 

Given the area where the tumor was located and how much of the rectum they removed the surgeon indicated that if I were to have the ileostomy reversed I could expect to have to go 6 to 8 times a day.  That's about the number of times I make a trip to the bathroom to empty the ileostomy bag now.  I'm pretty sure the estimated trips to the bathroom would likely be higher with the reversal.

Since they found mets in liver and possibly in lung I'm back on chemo and the reversal has been put on hold.  I've now had the ileostomy for a year and while I'd rather not have to live with the bag I have to admit that the alternative of going back to the bile acid diarrhea and panicked and urgent trips to find a bathroom is not looking to appealing.

I have some time. If the chemo doesn't work it becomes a moot point.  If it does work then I'll need to make the decision.  But doing a colostomy instead of keeping the ileostomy wouldn't be an option I'd take because of the issue with the bile acid diarrhea. I'd have to go back on the Questran 2 - 3 times a day and after 40 years of taking the stuff it's definitely not something I've missed. 

John23's picture
John23
Posts: 2094
Joined: Jan 2007

Whew.

I'm glad you liked the UOAA board, there's a wealth of info there for Ostomates of all types.

I've had an Ileo since 2006. Oh, I've had it relocated a few times after resections for adhesions, but it's has never been the horror show of the very first six months of having one. Once you know what works best for you; what product stays on the longest without leakage, you're on your way to being somewhat normal again.

When you lose the rectum/anus, or any associated parts, you have to have an ostomy; there's no easy way out of that. And although a colostomy is easier to maintain than an Ileostomy, you have to weigh the situation's pitfalls.

I doubt the bile will change too much for either ostomy, since bile is generated to break down fat and grease. A dietary change might help.

I do think you've made the right decision, under your cir***stances, to go with the Ileostomy; there are worse choices in life......

Your comment:
"I have some time. If the chemo doesn't work it becomes a moot point."

You have other options to explore if the chemo doesn't work. I shudder whenever I read someone putting that much stock into any modality and so willing to "give up" if/when that modality fails. You have other options.

Aside from that....... I would go with the Ileo and forget thinking about "other choices", you've already presented enough of a compelling argument to keep an Ileo! Chemo or not, don't look back or anticipate, do what you know is right for you. I doubt you'll ever feel it was a mistake.

My very best to you,

John

 

 

JanJan63's picture
JanJan63
Posts: 884
Joined: Sep 2014

The more I hear the more I want to keep my illeostomy. I dealt with IBS for years and my surgeon says it would likely be worse after. No thanks. The bag is a PITA and seems to suddenly fill up at often awkward times but then I think it could be feeling nauseated, faint, and crampy and having to run to the bathroom and mayeb not making it rather than just a big bump that I can easily empty out and have no pain or discomfort. The appliances are expensive. The governemtn pays a big portion or they'd cost about $36 dollars each time as I need a wax wafer as well. And I'm contsantly running my hand over the area to see if there's anything sticking out. And some ****y foods make it burn for a few hours. But with the IBS I could eat so few things anyway its a trade off I can accept.

And I've had a few incidents where the amount of mucous that comes out is uncontrollable so that tells me that if it were diarrhea I'd have been in trouble. I'm sitting here right now with mine tickling which means its time to be replaced. I've only had a few accidents and my body tolerates the appliance very well. I'll live with it. I'm on the list to have it reversed and it's been about ten months since I got on it so I've had plenty of time to think about this.

Jan

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