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Ileostomy reversal before or after post-surgical chemo?

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Ileostomy reversal before or after post-surgical chemo?

Postby janeandrea » Wed Apr 30, 2008 6:59 pm

Hi there - I just joined this site, after browsing a lot of the forum topics and answers, and feel that I may get some help with a decision I have to make.

I have Stage IIIb rectal cancer, with 11 of 22 nodes positive. I was supposed to have had 5 weeks of chemo and radiation (5 days a week), but at the start of my 5th week had to stop as a result of an adverse reaction to radiation. Basically, I swelled up inside and nothing was getting out. So on Feb 29, I was given a temporary loop ileostomy. To say I have hated having it (while I do understand and bless that it saved my life) is an understatement, and it has caused me all manner of emotional difficulty. On April 7, I had a low anterior resection, with most of my rectum and part of my sigmoid colon removed. Pathology report was not great, as it turns out my tumor was of the rarer mucinous type, and was still quite cancerous, and again, 11 of 22 nodes removed were positive for cancer.

I will be having 6 months of post-surgical chemo, and as of right now the plan is to first reverse my ileostomy (the week of May 19 sometime) and then start chemo about 3 weeks later.

So that is the background, here is my decision...I have been doing a lot of reading and am now wondering if reversing the ileostomy prior to chemo is still the best decision. I should note that since the LAR I have been having LOTS of problems with the bag and barrier leaking, and it is driving me insane.

But do I want to be dealing with relearning to use my bowels at the same time as starting what seems to be some pretty intense chemo? Yet the idea of having this bag one day longer, let alone 6 - 8 months longer is a horrid thought for me.

Can I hear some experiences both ways? Good reversal before stories and bad? ('course I hope the good outweigh the bad).

Thanks!
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Postby gocatsgo » Wed Apr 30, 2008 9:32 pm

Hi,

This is just my experience... but I also had a horrible time with the bag - especially with my skin, and the bag leaking with my ileostomy. That said, I could not imagine how much worse it would have been for me to have dealt with my reversal and chemo at the same time. I am thankful that my surgeon did not give me the option to do the reversal before I was finished with chemo. He would not because he said the chemo would "wreck his new rectum."

This was the best decision. I had the reversal a few weeks after my last chemo and slowly but surely dealt with it. I would definitely consider putting it off. Chemo is hard, "potty training" after a reversal is incredibly hard... putting them together could be very difficult. Of course, everyone is different, and you could be just fine! I would talk to your surgeon and onc about it.

Good luck and hang in there. It is not easy!
DX Rectal Cancer July 2005, age 32
Chemorads, FOLFOX, Xeldoa
5 Surgeries and 100+ nights in hospital
due to continuing blockages.
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Postby haymezwife » Wed Apr 30, 2008 9:32 pm

Hi Jane. It's Christy. Hope you are doing better. Honestly, it took me a good 2 months to really get used to all things ileostomy. It takes several weeks for the swelling to subside and only then did I really feel I was able to get things better under control. It's a learning process. Do you have access to a good WOC nurse? They can be really helpful as far as trying out new products that might work better for you. Also, I always set an alarm for about 2am and would get up and empty the bag. It sucked having to get up but it was quick, quicker than most nights when I get up now and have to use the restroom. Some nights I wouldn't mind having that ileo back!

I had my ileo for 6 months total. I was supposed to have 4 months of post-surgery chemo but only made it through 2. So I had 2 months of getting used to it before starting chemo, 2 months of chemo and then basically 2 months off chemo before the reversal surgery. The chemo did give me the runs I guess. I thought it was hard to tell having the ileo but chemo caused me all sorts of other problems too. Some was partially related to having the ileostomy but I don't think everyone has those problems.

I can only speak to having a reversal after chemo but just based on what I have experienced in retraining the bowels, I don't think I would want to throw chemo into the mix, especially chemo that is known to give you the runs. I have enough problems with that some days as it is.

Hope this helps. I know I have sent you this before so I hope you don't mind reading it again. Sometimes it's hard to digest certain things when you are in the post-surgical fog. FYI, the main reason I had to wait a full 2 months before starting post-surgery chemo is because I was an emotional wreck and my onc thought I needed the break so I understand where you are coming from.

Good luck and keep us posted
Christy
dx Stage 3 Dec 06
5FU and 28 radiation treatments Jan/Feb 07
Resection with ileostomy Apr 07
FOLFOX Jul/Aug 07
Ileostomy reversal Oct 07
NED!
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Postby CRguy » Wed Apr 30, 2008 11:10 pm

Hi janeandrea,

sorry you are faced with a tough decision but you asked for everyone's 2 cents worth so here we go :

Keep the temp ileostomy, let the "back door" healing go at its own pace and manage GIT problems with the pouch not the tush !!! When everything has settled down after chemo, do the reversal. One thing at a time. What I did and what I suggest.You have read other threads, and managing chemo effects with a pouch is less traumatic.

BUT...... Get Yourself The World's Greatest Ostomy Nurse !!!!!!!

No way you should be "trying to manage" with leaking etc. If your docs figured just a few weeks on the pouch until they go back into surgery, maybe they didn't give enough consideration to YOU, the patient and set you up with the proper outpatient support???? There are a lot of ex-Onco nurses on this board and I hope they can convince you that a loop ileostomy should not be a major complication in your treatment plan, but you need good support to manage it. I had 2 leaks in 6 months and my nurses were horrified they hadn't done their part to keep things right. I was absolutely overwhelmed by their level of attention and care, and they fixed every conceivable problem immediately. I luv'd 'em !

The post reconnection stories will vary from patient to patient. I am 8 weeks post and am still relearning the ropes. Good days, less good days, but for me, better than cancer or the ileostomy pouch. I plan on continuing to improve. It will be slow at times but again...one thing at a time.

PM me if you want more specifics or, wait to see what others have to say but I for one, support your choice to hold off on the reversal and deal with one step at a time. When you are ready...move on to the next step.

Cheers
CRguy
Caregiver who lost a loved one
Now Stage IV A rectal cancer/lung met
7 Year survivor on yearly scans
Caregiver again, whose Dad is now at Peace

...Butt...still believes in the beauty of life
and the POWER...of US !
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Postby NWgirl » Thu May 01, 2008 12:47 am

I'm also stage 3 colo-rectal cancer with 20+ nodes affected. I had my entire rectum and part of my colon removed and had a loop ileostomy put in when my tumor was removed, back in November. I've had chemo, chemo/radiation and starting Monday 8 more rounds of chemo. My surgeon didn't give me the option of when the reversal would be done - she said call her when I'm done with chemo - she would not reverse it before then.

Fortunately, I had (have) a FANTASTIC ostomy nurse. I don't know how I would have handled my ileostomy situation both logistically (which products to use and how) and emotionally (I was completely devastated to hear I had to have an ileostomy) without her support. She is a true angel. I cried and cried and cried on her shoulder and she helped me work through my issues.

Both the chemo and radiation give me diahhrea on a pretty regular basis. Despite not being thrilled to have the ileostomy, I am glad all this nuclear poop isn't coming out my bottom. My surgeon obviously knew what she was doing when she said she would not do the reversal until after all chemo was done.

There is an ostomy web-site that has a chat group similar to this one that you may find helpful in dealing with all sorts of ostomy issues. The address is www.uoaa.org The members are all very supportive and helpful. If you haven't checked it out yet I would strongly recommend it.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model
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Postby Guest » Thu May 01, 2008 2:05 pm

I am a 30yr old woman with colorectal cancer w/metastases to the liver. Back in Dec 2007, I had surgery for a perforated bowel, that is when the tumor was found. They got it out, and because of the "healing process" in that area, I needed a temporary colostomy. After I healed from the major surgery (my whole stomach was sliced open), I started chemo to make sure there were no "floating" cancer cells, and also to shrink the liver lesions so more surgery can be done.
I would keep the bag until all treatment is complete if I were you. Trust me, if anyone HATES this thing it me so I completely understand. The first few months are the hardest, getting used to it, problems with it leaking, sensitive skin, etc.....and not to mention the emotional side of it. I actually had blisters develop under the area where the wafer goes at one point. Talk about gross, and they itched so bad!! It's now been 5 months for me having one of these and I still have some mental issues, but not as bad as before. After a while it just becomes annoying and not so "horrible". The reason I suggest keeping it until all treatment is complete is because chemo causes the bowels to be irregular and some of the pre-meds you take for anit-nausea can cause you to become constipated. So you have the constipation some days, then the other one. With that said, your body needs all the time you can give it to heal on the inside where the stiches are, and with irregular bowels you might aggravate it. I'm surprised your doctor even said it was ok to get it reversed before chemo. I would get a 2nd opinion or do more research and then decide what's best for you.

Best of luck!
Jessi
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Postby HDLadyRider » Thu May 01, 2008 2:56 pm

My husband has decided to have his reversal prior to post-operative chemo. He had his resection on March 17, 2008 and says that he cannot live with this bag and told the doctors he wants it reversed. This coming Monday he gets reversal and then chemo to start back up 5-27.

Not sure his decision is the right one but it's his and I accept that. Doctors had concerns regarding any issues he might encounter during or after surgery that would put back chemo any further. He is still adamant about his decision and I'm trying really hard to respect what matters to him.

I wish you the very best of luck in your decision. I totally know what you are going through having mulled it all over the place a million times with my hubby.


Janine
Husband...Diagnosed Sept. 07 Stage IV
Chemo until 1/29/08
Surgery on 3-17-08 - Liver/Colon Resection
Ileo reversal 5-5-08
6/08 New tumor growing in liver/More Chemo
NED since 10/08
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Postby janeandrea » Sat May 03, 2008 11:05 am

Thank you all...I have not made my decision yet. I am meeting with my surgeon on Wednesday, and hopefully my oncologist on Tuesday. I wanted to meet with them together, but they are never in the same place at the same time for appointments. I want to get the lowdown from them on what I can really expect from each thing (chemo and reversal).

I have been looking forward to this reversal for so long that I am a bit disappointed to find out that it comes with such a long-seeming learning and recovery phase.

Nothing easy in this, eh? :)

Jane
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reversal of ostomy bag

Postby linda carlson » Sat May 03, 2008 11:35 am

My husband has stage 3 cancer and had his rectum removed. He was so unhappy with the bag that depression became a big problem. All he wanted was to have it removed. As soon as possible. I understand and I agreed with him. He has been losing LOTS of weight: 60 lbs in a few months. He's thin, in pain all the time, tired, and depressed. I couldn't bear the thought of him getting 6 months of Chemo in this condition.
I really believe his condition was all caused by the ostomy bag. He needs to get healthy and strong before going back into chemo again. I was afraid that if he went in this condition I would lose him for good. He is in the hospital now, he had the bag removed Thursday. He is so happy to have it gone. He is getting his color back, has been gaining weight, and he's happy again. (or as happy as one can be given the circumstances).
I am happy he made this descision, but then I fell upon this site.
Should I be worried?
linda carlson
 

Postby DeeDee » Sat May 03, 2008 5:45 pm

No Linda, you should not be worried. It is an individual decision and there really is no right or wrong answer. Dealing with an ostomy can be very difficult. Your husband may have more difficulty with bowel issues but it will not impact the effectiveness of the chemo. For him the increased bowel issues may be a small price to pay to get rid of the ostomy. Having the reversal first does delay the start of chemo but I am not aware of any studies that show the delay is significant. There is a point for some people where the emotional toll of dealing with an ostomy is just too great. For them doing the reversal first is the better choice.

I went into surgery not expecting to get an ostomy but woke up with a temporary ileostomy. I had a terrible time with leaking and skin irritation at first. I finally found a good ostomy nurse and it all changed. A good ostomy nurse is worth his or her weight in gold. With the right appliance you don't have problems with leaks and skin breakdown. I had my reversal after chemo and I am glad I did. It was much easier to deal with the diarrhea with the bag. It took about a month for things to settle down after my reversal. That would have been just about the time I would have started chemo so it never would have stabilized until after chemo. I also developed an anal fissure after the reversal that made having a bowel movement extremely painful.

My recommendation would be to keep the ileostomy until after you finish chemo unless you really just can't deal with it. There are a number of ifs that could happen to make life a little more difficult when having the reversal before chemo. None of them may happen but there is no way to know for sure since everyone reacts to things differently.

Whatever you decide don't look back and second guess your choice. Instead focus on moving forward and making your choice work the best it can for you.
Hugs,

Dee
Stage 2 Rectal Cancer
Tomo Radiation and resection 12/06
Folfox stopped after 3 due to toxicity
Ileostomy reversal 04/07
NED
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Postby GO BLUE Girl » Mon May 05, 2008 10:06 am

Hi janeandrea, Yes nothing is ever easy with cancer and the decisions to be made. If you have the reversal then start chemo you ideally should be waiting 4-6 weeks to let your body heal. That to me seems like a fairly long time to wait to get that chemo in there killing those roage cancer cells. If you kept the ostomy then you could start the chemo sooner, and bowels issues like diarrhea, etc will be less of an issue. Like Crguy said find yourself a good ostomy nurse that will help you through. Sometimes you need to try several different bags to find one that works for you.
I too had an ostomy after developing a fistula 2 weeks after a successful resection for rectal cancer and was very disapointed that I could not get it reversed right away r/t the need for a round of oxaliplatin(5 0f 29 nodes positive). i too was so disheartened about the thought of having that bag one more minute than I needed it. But in the end it was the best thing for me to do to fight the cancer although mentally it sucked physically it was better for my body and to fight the fight.
It will be a tough decision but listen to all your doctors then trust your gut instinct you are the one who knows your body best. Good luck and stay strong. Beth
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Postby janeandrea » Wed May 07, 2008 10:07 am

Thank you everyone so much for all the input. We met with my oncologist last night (the man actually made a house call after business hours....I have the BEST oncologist!) to discuss this matter.

He is of the opinion I should have the reversal first. He doesn't think delaying chemo a week or two will make a big difference, but he does think my emotional reaction to the ileostomy has made a huge impact on me. He said he saw the change in me the minute I got the bag. That I was strong Jane before, and he wants that one back. He doesn't think the side-effects will impact me that much more without the bag. I didn't have a lot of diarrhea with my pre-surgical 5FU, and the other side-effects of the FOLFOX won't be related to anything I go through while my bowels relearn their job.

So unless in my meeting today with my surgeon shows anything unusual (like an infection or fistula or abscess or something...I have had quite a bit of rectal pain), or unless he feels strongly it would be better for me to keep it, I will probably go for the reversal first.

Thanks so much for your input, though it would seem I am going against most of your advice! :)

Jane
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Postby lorrainem » Wed May 07, 2008 5:47 pm

My two cents...the runs were easier with the bag. As a matter of fact, I just recently realized I never reported them as a side effect because the bag made it easier...not running to the toilet, no bottom burns to worry about.
Get a good ileo nurse to help you with skin and appliance issues and you'll work it out together.
Good luck....ps, have had my last tx of chemo and am waiting until the summer is over to reverse, need a break from being a patient.
Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08
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Postby janeandrea » Mon May 12, 2008 2:08 pm

Well, the decision may be taken out of my hands. Both my surgeon and my oncologist agreed that the reversal first is the best option. But then it turns out my surgeon is concerned about a tightening of the lumen at the anastomosis. So I have a CT scan tomorrow and a flex sig on Friday. If those results show that a dilation or some other procedure is necessary before reversal, then we will have to start chemo right away, as the delay would be too long.

I am a bit nervous about the results of these tests. Nothing really so far has gone as planned or hoped for in my treatment course, and I am hoping this is not yet another setback (I was never supposed to have an ileostomy to begin with - had to have it because of an adverse reaction to radiation - swelled up my ascending and descending colon, so that I was blocked).

Thanks for all your input....

Anyone out there have experience with dilations?
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Re: Ileostomy reversal before or after post-surgical chemo?

Postby chaim » Wed Jul 07, 2010 8:37 pm

hi all

i had surgery 2 weeks ago after 5 weeks of chemo and radiation, most of my rectum was taken out and a temporary illiostomy installed
i understood from the doctor that i need 4 more months of chemo now and in six months the stoma will be reversed
now after the biopsy found that all my lymphnodes were negative and even and no cancer was found at all i hope the chemo doctor will let me wait with the chemo till i take reverse the stoma
i cant see myself living with the iliostomy one more day not to mention 6 months with all the leaks and skin irritation
the surgeon told me that if no chemo is needed it can be reversed after 3 months

i have a few questions for you

1 my stoma nurse is a nice person but wasn't to much of a help, can i get some more help somewhere else, i relised there is not to much knowlage in this subjact around, i checked in a emergecy room one weekend having blood in my bag plus very strong iratoion and they couldnt offer my to much help
2 if the doctor says i need chemo anymore can it wait till 2-3 months after the reversal or does it have to be done Right away?
3 i have very strong pain in my colon is that usual 2 weeks after surgery? when is it getting better?
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