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Living with a J-Pouch

Firepink
Posts: 1
Joined: Nov 2012

August 12, 2011, the Doctor came in my room after a routine colonoscopy told me that he found cancer. The tumor was real close to the anus. My husband and I went into shock. Now, what? Appointments were made. Test were taken. Then the news that the tumor make be too close to the anus to be saved. The cancer was stage 2. The only blessing I saw at the time. Chemo and radiation was first. Then about a month out from surgery, my surgeon told me of a new procedure he heard of at a conference he recently attended. He thought I would be a candidate. He had heard of only 5 doctors in the country that did this procedure and one of the doctors was at Duke. After more test, I was a candidate. I was to have a temporary illiostomy after more chemo, then the reversal. I don't know which was worst the chemo and radiation or recovering from surgery. I had every complication there was except for pneumonia, I even had blood clots in my lungs. I also lost my spleen during surgery because my colon was up around my diaphragm. Two weeks after my last chemo, I had the reversal. Now, I don't know what to do. I know I am depressed. There is no one locally that I can talk to about what to expect. I have gone through eating then to the toilet. I have been constipated then to diarrhea within a day. The pain of going to the toilet at times is unbearable. Then I still worry about the cancer coming back. All I do is work and rest. I want to excerise but to scared that I might have an accident. I am learning to eat again. Certain foods bother me where as others causes weight gain. I am still tired all the time, when will that stop? When will I have a sense of normal ( a new normal)? What got me through this past year was my faith in God and my humor. My humor is now starting to slip. My faith will not!

Lovekitties's picture
Lovekitties
Posts: 2933
Joined: Jan 2010

Glad that you have found this board as it is a place of lots of folks who willingly share their experiences and insights.

Have you discussed your issues with your doctor? There are meds which can be given to help with your issues. Perhaps an appointment with a Nutritionist would be helpful in getting eating issues under control.

Some folks here have found that probiotics are helpful in getting the "good" bacteria back to working after surgery. Check with your doctor though before taking anything, even over the counter meds.

What appears to be diarrhea can also be a sign of severe consitipation...where only the most liquid parts of waste are being eliminated.

Walking is a good exercise to start out with. Walking can help with getting waste moving in the right direction, If you have to, wear a pad or Depends to provide "insurance" if need be. Better to be prepared than not.

Don't lose your humor...it is a valuable thing to have during times of stress.

Others I am sure will chime in with their thoughts and advice.

Hoping for better days in your future.

Marie who loves kitties

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

you are not alone.
Your story is much like mine and others. though I have a permanent colostomy.
It is hard to stay positive all the time.. it is ok to give in once in a while... I know easier said than done... I suffer this infliction... I don't want to be down and yes faith and sense of humor are fading now at almost 2 years from DX and 1.5 yrs from surgery.. and now have metastisis in the lungs.. wenr from stage to top 4 in one year.. scary...

Know that here you will find support and guidance from those who have been thru the same experiences as you..

Welcome.. thou I wish it wasn't for these reasons..

Peace and light being sent your way...

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

so sorry to hear your news... but glad you found this board.
the two posts already above are excellent examples and two great people who will share and help you.

I've had the reversal and it was very difficult... but I have to share that I'm on the better side of this. now, we are all different and everyone's fight and recovery are very unique, but please do not loose hope. Do not lose the laughter. and so glad you won't lose that awesome Faith.

Walking is a great way to "get things moving" and if things "move" too much... Laugh like hell!
And, if you make it with out things "moving... down your leg", continue laughing, but thank God for that great half hour walk!

and pick yourself up and do it again tomorrow.

you don't need to walk fast, you don't need to break a sweat. Just lift yourself up and enjoy moving around and enjoy the treadmill, the stairs, walking around in circles or back and forth in your home (in front of the bathroom if you need to) and eventually, you'll be able to walk 5 minutes out and 5 minutes back. and hopefully expand that by a few minutes.

baby steps!

as for the comments about Talk To Your Doctor.
that's the very best advice. It's time for you to Stand Up 2 your Cancer...which to me means... stand up 2 your doctors. Take control, complain and complain until they help you fix these problems.
it stinks... but there are meds to take care of about everything... but they only offer the meds when you demand some more attention.

and, if the current doctors do not have answers for you... find the next doctor!

get mad, get aggressive and demand better.

and you'll get what you ask for! (or what you don't)

You're in my prayers today.

Hugs

Joe

Coppercent
Posts: 142
Joined: Jan 2012

Always love to read your posts they are so positive and uplifting. The one thing that has been a positive for me through this cancer is nothing can embarrass me anymore. Too many embarrassing moments have happened in the last 15 months. Although I have always handled things through humor.

John23
Posts: 1832
Joined: Jan 2007

Do yourself a big favor and go to the UOAA website.

Their forum is like this one, but it isn't about cancer, it's about
having an ostomy and how to live with one.

You mentioned having a "J" pouch? There are people there
that can tell you everything about having one, all the good and
bad, and how to manage things.

The doctors don't always offer meds to "solve problems", since
the meds carry side effects, some of which can be worse than
the problem. Meds can stifle the intestines when it's better to
get them woke up and alive again. Most intestinal problems
that are present right after surgery resolve themselves without
mediction. Taking meds to "be comfortable" isn't always the
best idea, and your physician should be able to explain that
to you, if you ask.

Try reading at the UOAA; you may find that it fits your needs
better than the information you can get here regarding an ostomy!

"been there; done that".

Things will improve!

Be well,

John

cinreag
Posts: 154
Joined: Oct 2012

I dont have a j-pouch or a colostomy but I know about uncontrollable diarreah. Before my tumor, in my small intestine, was found I had to unfold a diaper in my underwear, and carry a bag with wipes and extra diapers in it. I would have no cramping that would warn me to get to the nearest restroom. It was bad. My family dr. just kept treating me for IBS and telling me to change my diet. I lost 30-40 pounds in 21/2 months. He finally took me serious when I took one of my diapers(dirty) in a bag to my dr. appt. He immediatelt set me up with a colon Dr who finally ordered exploratory surgery where my tumor was found.

When I was being "educated" about the chemo I was going to take,the nurse told me it would be very helpful to find something to laugh about every day. I do normally have a good sense of humor but there have been plenty of times that I have lost it for awhile.

I wont worry about my comment being too graphic because Im sure you all have been through similar experiences.

I love this board. It is such a relief to know other people know and understand what I have been/am going through.

~Cindy

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

I too had a very low tumor and a reversal after having an ileostomy for a year. It was rough at first, but it did get more manageable and easier. Here's what I learned along the way:
1. Pay close attention to what you're eating and the food's effect on the body. Rice and bananas are good natural "firmers" and yogurt and fruit juices tend to loosen things up.
2. When you go out, have a backup pair of clothes with you.
3. I was horribly embarrassed to buy and use Depends, but I got over that and used them quite a bit in the early months. (It won't be forever.)
4. Careful with the pain meds---they can make you so constipated you can cry. (Sort of got that from your post.)
5. Walking will help tone the entire region and give you a sense of helping yourself get better.
These are the first five things that came to mind. I am now two years post-reversal and things are mostly good, but I still have the constipation/diarrhea conflict at times. The GI doc said to take metumicil everyday, and to take some miralax at the first sign of constipation.These do help.
(There are also ppl on this board who elected to have a permanent ostomy after having the reversal done and not liking the results.)
Give it some time, and give yourself a break. You've been through a lot.
Take care,
tommycat

Annabelle41415's picture
Annabelle41415
Posts: 4240
Joined: Feb 2009

I've had mine for 3 years and it was hard controlling the almost "uncontrollable" new rectum. I'm still having to watch what I eat and sometimes just have to pass up eating if I'm going someplace because usually after lunch I'm running off to the toilet with sometimes (not always) much warning. It has gotten so much better than it started out but everyone is different. The pain from going the bathroom is normal and I'd be sitting their with tears rolling down my face it hurt so bad. There were times I'd go up to 35 times in one day and thinking of having to go one more time sent me in a panic. Try a sitz bath, aquaphore and calmoseptine (bought behind the pharmacy counter but not a prescription). Welcome to the board. You will find a lot of help here and check out John23's recommendation as they are very good on that board as well. Let us know how you are doing and if you have any further questions.

Kim

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