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After Ilestomy Reversal Advice needed

Suzycat
Posts: 3
Joined: Mar 2017

This is my first time on here and I was diagnosed with rectal cancer back in October and had my surgery in November, then I had my reversal surgery on February 27, 2017.  It has been challenging to say the least.  I'm hoping to get some advice from people who have gone through this to see what steps they have taken.  It just seems like my life right now is geared around my pooping or possible pooping etc.  It seems when I go now it's little amounts several times.  It's nothing to make maybe 10 trips to the bathroom in an hour.  Resulting in a very sore bottom and sometimes bleeding.  I'm sure this is normal (the bleeding part I hope).  I've been using desitin, preperation H, neosporin with pain relievers in it, etc.  I even tried tucks but with the rawness those burn.  I can now start eating high fiber, so I'm hoping that will help but I'm going to also try taking a dose of metamucil once a day and am hoping maybe that will help my poop form into more normal poop and possibly have one bowel movement a day (wishful thinking??). 

So if anyone can share some tips on this I would be so grateful.  When I'm at work I try to eat very little just to get through the day, come dinnertime, I eat a little more and then if I can get through dinner without getting up, the next hour or two I spend in and out of the bathroom.  At that point I just want to cry sometimes.  Anyway, I appreciate any advice from you.

danker
Posts: 1282
Joined: Apr 2012

Get a prescripion of LOMOTIL to cope with the diarrhea.  Radiagel available at wallmart will relieve your bun burn.  Good Luck to you!

Suzycat
Posts: 3
Joined: Mar 2017

Thank you Danker.  I'll check out the Radiagel. 

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

I had even tried opium for about 1/2 year.  Nothing good came from my efforts.  I now have a permanent ileo.  The MD Anderson Poop Protocols (Bowel Training Guides) might be of some help.  They ultimately did not help me enough to make a difference, but they might offer you some aid/assistance.

https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/bowel-management.html

Good luck and be patient!

AirborneMP's picture
AirborneMP
Posts: 19
Joined: Mar 2017

I have treatments (Rad/Chem) after I wonder if I should hold off on reversal.

Olafsson
Posts: 1
Joined: Apr 2017

I had my reversal 6 weeks ago. I did look forward. The cancer is gone and I was very hopeful. It has been the most difficult time of my life. The second day after the reversal is probably the worst day ever of my life. Going to the WC 35 times a day is normal. I have figured out that if I do not eat brekfast I can go out and do some work and meet people. When I get home around 1pm and after the first bite of lunch Im on the run again. It is hard and it is humilitating to be around people and not make it to the WC. Pain killers and being on the run is the routine of my life now. But a wonder happend yesterday, I had a pretty good day. Still 32 runs to the WC that day, and suddenly today down to 21. I still have no feeling in my bladder but going that often to the WC keeps it empty most the time. In the night I do make my run 4 to 8 times, but without any accidents. 

This webpage made a great difference to me, I thougt I was alone. I do not have any threads like this one in my language and it helps to read from others. I must say, I had a  3 stage cancer and fighting that was much easyer than the aftermath. Cry when you have to and keep up the spirit in between. Life is good.

Trubrit's picture
Trubrit
Posts: 5491
Joined: Jan 2013

Cry when you have to and keep up the spirit in between.

What beautiful advice.  We all need to hear that it is OK to cry.

TRU

Jeanne123
Posts: 3
Joined: May 2017

So true

old Indain
Posts: 1
Joined: Apr 2017

ask your doctor for Hydrocortisone cream 2.5%  Rx strength. You didnt say how much of your colon was removed? this is important because the lower part retains water. This benifit is lost once its removed..so you need plenty of water, just before I go to the tolet I drink a large glass of water [helps a lot].Also try Probiotic's and when its unbearable use a enima

 

lhduffer
Posts: 89
Joined: Oct 2015

I had my reversal September 2016.  The first few months for me were also quite unpredictable.  As time goes on it does get better.  You will also learn some of your personal triggers, as they are different for all of us.  Although one very common trigger is salad (green leafy vegetables).  You are doing the right thing by trying different things such as metamucil and adding fiber, although as my surgeon told me that adding metamucil can go either way.  At seven months out, I am spending less time in the bathroom (sometimes just 1 or 2 times a day), although every 3rd to 5th day I typically have what I call a "purge" day which increases the number and length of time I spend in the bathroom.  My surgeon said it can take 6 months to a year and sometimes longer for us to find our "new normal" as I will never have my old normal.  A couple of other options for the sore bum are: calmoseptine ointment and also butt paste (in the baby isle).  Hoping it is starting to become more manageable for you.

danker
Posts: 1282
Joined: Apr 2012

I got a reversal after 6 weeks with ileo bag.  Developed a fistula at ileo site. so more weeks with bag.  Fistula healed itself from inside out.   Lucky me!!  In the seven years since, I still occasionaly get diarrhea.  Sometimes to the point where I need LOMOTIL to stop it.

But for the most part, I live a normal lifestyle.  Maybe it is just me, but I would reccommend reversal to all who have the option!!!

Good Luck to all.

 

Jamimasucci.
Posts: 1
Joined: Apr 2017

I had my reversal last July and unfortunately every day is consumed with will I or won't I go!! I had the opposite of the norm which is usually diare. I suffer from constipation taking 5 stool softness a day and milk of magnesia once sometimes twice a day. I had several complications to my colon resection surgery last February including an infection thus second surgery and bag,two fistulas,vomited stool,a dvt blood clot,had a wound vac off and on for six months and my bag leaked stool into my scar every day, needing to change the bag up to five times a day. Things have improved but now I deal with bowel blockages from the scar tissue from the surgeries.But the one thing I can tell you is I don't miss the bag and things will get better. It's all a guessing game because we're all different. Now I'm in pain management to try shots that are supposed to help the scar tissue pain To try to keep me out of the hospita. This cancer stuff is tough.

Bellen
Posts: 281
Joined: Aug 2016

Just wondering what type of pain management shots you are trying to help the scar tissue pain.

I had anal cancer several yrs ago and now have a small intestinal stricture, as well as my new diagnosis CRC with mets to liver now (drs say radiation caused scar tissue which narrowed that area).  I get partial blockages that cause very painful spasms that can last several hrs if it is really bad - awful.  I don't eat or drink until passes - feel I don't want to work the intestinal muscles or nerves?? to get the food through.  The only thing that I think helps a bit is ibuprofen (think it reduces some of the inflammation that might be contributing to blockage).  This has been very frustrating, as no dr has really been able to help me. At the time, I was diagnosed, surgery was contemplated, but then I was told scar tissue could build with resection. Also worried about the other organs and how they have been affected by so much previous radiation.  I have followed a "low residue diet" since to try to reduce the chance of blockage - foods that digest easily, little fiber, no seeds, grains, nuts, fresh veg, fruits, etc - not the healthiest, but supposed to help reduce chance of blockage, so I stick to it pretty much.  

Would appreciate knowing what the shots are called and if you find them helpful.  Wishing you the best.  Thanks for your help.  

Brownnurse
Posts: 2
Joined: Nov 2016

How did you know you have scar tissue? I think I do but my gastro said colonoscopy was ok. I am almost 11 mats post reversal after rectal cancer. I too am always constipated but really it's like I can't evacuate completely. I live on trying everything including enemas to clean out. So frustrating.

Jeanne123
Posts: 3
Joined: May 2017

I had my ileostomy reversal January 2016 and it has been very frustrating. It has been a long road and I also feel like my life revolves around pooping. Be patient because it gets better, slowly. I still have days when I may go 5 - 8 times and sometimes I don't go for several days. Try not to get to frustrated, we are fortunate ones that were able to have a reversal.

Bellen
Posts: 281
Joined: Aug 2016

Hi Brownnurse - You asked how I knew I had scarring.  About 5 yrs after having several pelvic rad treatments for AC (2005), I had extremely painful spasms - went to ER, where they did a CT scan and upper GI.  Was diagnosed at that time with small bowel stricture - Onco checked the radiation field from previous cancer, and confirmed that this area of the small intestine would have been in the rad path and caused the scarring, which contricts the intestinal area.  A colonoscopy cannot reach that area of the small bowel, and since then I have not had a procedure that picked up the scarred area.  Was going to have surgery but concerns were that scar tissue would build there anyway, so have tried to deal with it for yrs following  a "low residue diet".  I still have had about 8 partial blockages - extremely painful spasms that can last for hrs - ended up in ER about 3 times and the rest I deal with at home - rest, no food until spasms pass.  I did find that taking Ibuprofen helps, as I think it is also associated to infllammation in that area.  It is frustrating, as most of my CT scans of the abdomen since have not seen this stricture.  You would think that if I have a scarred, narrow area, it would always show in the CT scan.  I have heard that blockages can be hard to confirm with diagnostic tests, but they sure wipe me out.  Also get more minor ones that can make me feel pretty crappy, bedridden, but not as long as the partial ones.  

I find the fulfir chemo that I am on really upsets my system - I have suffered with constipation issues - have taken miralax daily for about 5 yrs now (foods with too much fiber bulk and can cause blockages so not recommended for low residue diet). The chemo and meds aggravate and complicate my side effects - more issues with constipation and diarrhea than others might experience.  Always trying to adjust with miralax, sennakot S, and then immodium if swings the other way.  My Gastro Dr said miralax is the safest for ongoing constipation - does not want me to have laxatives that bulk - have a great dietician, who considers the foods that should not be in my diet, and those that will help prevent blockages in that strictured area - I listed some in my above post.  I hope you can find some relief - if you have a strictured or scarred intestinal area, I do think a low residue diet, because these foods are digested more easily, (although restrictive, and some items not so healthy, and can be more time consuming to prepare) can help to reduce the painful spasms you get with a blockage. For instance, in order to get certain veggies, fruits you may have to juice them, cook until very soft, remove skins, seeds, etc.  Hope this helps a bit.

Brownnurse
Posts: 2
Joined: Nov 2016

Thank you so much for your generous reply. I am on low residue diet and take Miramax,colace and Benefiber daily. I feel like I have strictures somewhat. Colonoscopy showed nothing,Dr repeating with sigmoidoscopy this week.  I think your right may need something more to see.  Did you mean no fiber supplements? I too have had radiation and chemo.

bj12651
Posts: 5
Joined: May 2017

 Hi there,

 I credit my success to my wonderful surgeon. After a year I am back to normal. When I first had my reversal I was going several times a day.  Their are somethings I cannot eat unless I am home like salads, red sauces, and sometimes chocolate it tears my stomach up but for the most part I can eat about anything I want to. The  one problem I have to this day is when I gotta go, I gotta go. No delays.. they say that to will get better. Thank godness I'm always near a restroom.  It will take some time but you will be fine. Good luck

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Reading these posts has brought back a lot of horrendous memories of when my ileostomy was reversed. I developed an anastomotic stricture at the resection site and had to be dilated several times before my surgeon would perform the reversal. It sounded like you were having the same problem, but you said a colonoscopy didn't reveal anything like that, so luckily for you, the problems you're having should eventually calm down. You have to retrain your bowels to function the way you want them to. Even with a stricture I was able to do it, though it took many,  many years (the resection surgery was almost 10 years ago). You'll learn what foods irritate your bowels more than others, and what types of foods to completely avoid. It will take time for your bowels to learn their new place in your body. Someone once told me the amount of time this will take is double the amount of time you had the ostomy, but this wasn't true for me because of the stricture. Everyone's different, so just be patient with it and keep a record of what you're eating and what it does to you 1 to 24 hours after you've eaten it.

Good luck!

Krista

 

AuburnJackie
Posts: 1
Joined: Jun 2017

This thread had been so helpful to read. I got my ilestomy reversed last month and it has been incredibly difficult. I know we will never be back to normal but I sure as hell hope we can at least attend events and go to public places without having an axiety attack about where the bathrooms are and how quickly I can get there. Aside from chemo, this has been the most difficult part of my cancer journey.

Trubrit's picture
Trubrit
Posts: 5491
Joined: Jan 2013

Unfortunately, for some of us (most of us), it takes months and sometimes years to get to a comfortable place.  I did not have a bag, but after radiation, I had no control over my bowels for months. I couldn't go anywhere, until I found my little canyon, with trees to run behind. What freedom that was!  I still have emergencies, but nowhere as bad as before. 

It is a long, hard journey, and I wish you the best.  I am happy you found this site and this thread. 

Tru

ThomasH's picture
ThomasH
Posts: 104
Joined: Jun 2016

I have been really fortunate with my reversal I think. The first month afterward were not fun by any means, but managable. I still have to go 7-10 times per day, but I'm finding that there is a lot of variation depending on what I eat. I had to really pay attention to what I ate when I had the bag, and pretty much exactly the same foods that affected my flow when I had the bag still affect me the same way now that I'm reconnected. Not really surprising I suppose. Fortunately I've never had to take anything stronger than a couple Immodium.

I've found it definitely gets better with time though, so if you are still early into your reversal, there is hope for sure.

Thomas

Mary1864
Posts: 39
Joined: Feb 2015

Hi Suzycat, 

I am one year exactly from my reversal.  Had an ileostomy for almost a year....choosing to just get thru treatment first.  I had so much anxiety about how the reversal would go.  I spoke with a local support group and the leader told me that I would need diapers at first.  I cried all the way home from that meeting.  

I hope you have had some succes with your reversal.  Everyone does adapt according to there own needs...but I wanted to share what I did.  Post op you are bound to the bathroom.  Sticking with a low residue diet is really important for the first two to three weeks post op....I was in no hurry to eat any foods that were hard to chew For a few months.  Take probiotics daily.  I take Florastor.  They really seemed to regulate me.  For us who have lost the majority of the rectum...imagine that now your body lost the ability for waste to be stored.  That is where my urgrnency to go came in.  Practice....when you are home.  Hold it in as best and long as you can.  You are retraining your bowels...and they will listen!  Trust me.  When you get an episode of diarrhea...go back to low residue. Occasionally I will take immodium....but it is used sparingly.  

I hope some of this may be of use!   Never purchased diapers....never needed them.  

Best wishes,

Mary

mysweetheartrusty's picture
mysweetheartrusty
Posts: 19
Joined: Jun 2017

The pampers baby wipes sensitive kind help for the bum. They can't be flushed but they do have something in them to keep the irritation to a minimum.

So sorry you are having a tough time! Its such an aggravating thing to adjust to.

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