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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: 4188
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 spicy 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: 2883
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
Posts: 1832
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: 1075
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

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