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A warm HOWDY and a question

AncientTiger's picture
AncientTiger
Posts: 130
Joined: Mar 2011

I've posted on a few threads, but figured I'd toss in a HOWDY to the community, introduce myself, and pose a quick question...

My name is Sam. I'm from central Missouri and 41 years old, wife and three wonderful children (two girls, one boy...as my avatar shows). I've spent my entire adult life involved in law enforcement, and currently work dispatch for the highway patrol. I'm into computers BIG time, rebuild and build them, program them, play games on them, you name it.

Last year, about this time, I had had three weeks of constipation and was in a great deal of pain. I worked my last shift on Sunday, March 7th, had off the following Monday and spent the day on the couch TRYING to get some rest. I had been unable to hold down anything but Boosts for over a week. That afternoon, I drank one just to have it come right back up five minutes later. After I had finished my business in the bathroom, I tried drinking a glass of water to calm my stomach, just to have IT come up a few minutes later. At this point, I said enough's enough. I'm a stubborn redneck, but even I know a person can't live without water for very many days. I was admitted into the hospital that evening, a cat scan revealed an obstruction in my colon, and I was operated on the next morning.

The surgeon told me that he cut out about six-eight inches of my colon, and that the mass APPEARED to him to be cancerous. He also told me that due to the extended period of time that I had waited, my intestines were EXTREMELY inflamed and swolen. He related to me that as soon as he made the initial incision, everything just "smooshed out" onto the table. Of course, being the quirky guy that I am, I asked him, "Oh, just like the hoth creature on Empire Strikes Back when Han Solo cut it open with the light sabre?!?" We both had a good laugh at that one.

A few days later, he gave me the bad news... the pathology confirmed his fears.. it was cancer. And since two of the lymph nodes indicated the presence of cancerous cells, it was classified as stage three. Talk about my world turning upside down and sideways. I don't cry very easily, but I have to confess to the old tear ducts getting a workout that evening.

The following week, my vitals crashed due to fluid loss... I had been retaining fluids so they had giving me medicine to get rid of them, but it was overkill. They almost had to get the crash cart after me, and I ended up spending a day and a half in ICU. Later that week, I developed a football sized mass in my abdominal cavity that had to be removed surgically. Turned out to be the result of a slight rupture in the small intestine that created the abscess. Then to add to my joyful hospital stay, I developed staff in my first surgical wound.

Five weeks later and 90 pounds lighter, I got to go home to recover. April 11th that was. Middle of June and I was back at work, and started chemo the third week (I believe...can't remember for sure). That first chemo treatment was scary, as everyone reacts differently to chemo, and I kept picturing the scene on the movie The Bucket List where Jack Nicholson and Morgan Freeman were shaking in misery and taking turns upchucking their socks. Fortunately I guess I had used up my quota of bad luck for that yaer, because I got off easy. A little diarrhea, a little fatigue, a little neuropathy and that was about it.

My last treatment was November 5th, 12 of 12 and I'm a chemo graduate! Even got an "atta-boy" certificate from my chemo-lounge nurses! Had a follow-up with my surgeon later that week and for the five-thousandth time asked him WHEN we could get the bag off my gut. He pondered it for a moment, then said, "Two weeks out would be about the middle of November...how does the 16th sound?". I'm a happily married man, but I swear I came VERY close to kissing the man.

My final trip "under the knife" came in the middle of January when I had corrective surgery on the hernia that had developed from the initial surgery. I also had the surgeon remove the port he'd put in. My feeling on the matter is that I've spend the last year with artificial appliances in me and on my... I'm ready to get back to being "all natural" again. So, a five week recovery from that surgery, and here I am back at work again, and if the prayers I say almost every day are answered... FROM NOW ON until I retire.

Through it all, my wife has stuck by my side. She has been the rope I held onto while dangling over the abyss. If it weren't for her, my family and my friends, I really, honestly don't think I'd be sitting her typing this right now. And of course, while I'm giving out thanks and kudos I must thank the most important person in my recovery... my Lord Jesus Christ. Without His 24/7 presence, love and healing, I KNOW I wouldn't be here right now.

Now... I'm done writing the book... here's the quickie question. I had my ileostomy reversal in the middle of November. After the initial several days of diarrhea I started having more solid output, and a sharp pain at the...ahem... "exit point". I just chalked it up to nine months of disuse, but it's STILL a sharp pain.

Has anyone else that's had this done experienced something similar, and if so, is there anything to be worried about, or that can be done?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

so Sam,

great intro.
is there anything to be worried about, or that can be done?
we cannot advise about any treatments.

but you can search our archives very easily.
in many of these you will have hopefully lots of constructive discussion for and against.

some good key works
juicing, just great for your whole body
vitamin d3, possibly reduces reccurance risk by only 75%
exercise, possibly reduces reccurance risk by only 50%
naturopath,
TCM, chinese herbal medicine
hypnosis,
physiotherapy

great intro and welcome again.

Pete

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

;) Pete,

Didn't you get medical advice to stop juicing when you had the trots?

Sam,

Search on ileostomy reversal. You will come up with some interesting stories.

Here are a couple from a quick search I just did:

http://csn.cancer.org/node/212622

http://csn.cancer.org/node/207520

http://csn.cancer.org/node/205974

Me, I have an irreversible colostomy, so this is the best I have to offer.

AncientTiger's picture
AncientTiger
Posts: 130
Joined: Mar 2011

Thank you Buckwirth, for the links. I had already looked through most of those, but unfortunately didn't find the answers there.

And I got a laugh out of "version 1" of your post/reply to Pete... meanie :P LOL

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi Blake,

Its a good reminder about my onc and naturopaths advice for me is to be very
careful with juicing and ileostomy. Its called the osmotic effect. I have not really studied it, just took the advice offered and work around it as a known caviate.

I have bad diarrhea right now worst in weeks and ain't touching my juicer.
My juicer looks sad, its looking at my like my dogs saying why not play with me. I am on my last day 5fu bottle this cycle and my stomach lining must be stuffed.

Juicing is not worth the risk for me, I have pretty much seen cause and effect on my own body once or twice when I have had a juice with encroaching diarrhea and whammo I get a little gusher coming on. I am a bag squeezer. I am always feeling the bag, to know through the day to know how my poor system is going. With my diet and exercise.

I JUICE WHEH MY GUT IS GOOD. WHICH IS FOR ME 12 OUT OF 14 DAYS APPROX.

So If my digestion is working well, I juice morning and night. I always try and get some life enhancing green goo into to me. I think its the beetroot and celery that cuase the problems amd I have not varied it.

In between the good and the bad, I might goto one juice a day, a bit weaker and sip it over an hour, or a couple if smaller juices. Its kind of a suck it see approach.

Until I have a junky, firm bag I don't juice. Its not worth the trip to ER and I know personally of patients ending up in ICU with chemo induced diarrhea with ileostomy.

This is a good practice people should be careful about, thanks blake for bringing it up for newbies.

I should mention my naturopath's are angles I have 3, all different but care for me. I am walking to one right now. To fix diarrhea without western drugs I use digestive enzymes, gut relief powder, home made anti diarrheal mix and probiotic and slippery elm. they have really helped. Since trying these I have had only to resort on one occaision my onc treatment of 2 codiene and 2 gastrow stop. I still carry them because, diarrhea is my biggest side-effect issue. My wants to right me more scripts, but I said I don't need them and if I do I'll give you a call. I hope the natural remedies work on me today.

For me western and natural are the way to go.

love to all,

Pete

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

Just wanted to say "hello" and welcome.

I wish I had some info to share with you, but I am new too, and have not had an illeostomy.
Hope you feel better soon.

Sandy

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I don't have an answer for you on that one, but I just want to say that I loved your post! I'm sorry about that cancer bit, but our sense of humor is fabulous. Your outlook on life is going to do well for you in this fight.

*hugs*
Gail

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

So glad you found us... and so glad to read your story and you are on your way to total recovery! You, go, Dude!!! :D

Your story coincides soooo much with my own when I was first diagnosed (Dec 2006)... and I LOVE hearing similar stories end up with good endings :D BTW, your profile picture is wonderful! What great looking kids you have and you are lookin' like a pretty healthy specimen of a male who has just had a year of hell and back :) I think you need to have a neighbour or friend take this same photo again, this time with your angel of a wife in the picture. Every caregiver who gets one of us semi-colons through the journey is a very, very important part of our online family... so tell her we want to meet her too! :D

Now, a bit of a chuckle from Pete's post to you . You asked a question about whether it is normal to get a sharp pain when you are doing your business, or is this something you should be getting checked out. Pete's answer to you was juicing, vitamins, Traditional Chinese Medicine and everything that has nothing to do with answering your question.... but you have to forgive Pete... he's so very near the end of his chemo treatments and is going full speed ahead with alternative treatments... not that he's trying to get you on the bandwagon .

I don't have an ileostomy so couldn't tell you if this was normal after the reversal surgery or not. You could certainly do a search for topics on this subject here on the forum because I do know a lot of people have had them... both permanent and temporary. Some have great stories about their reversals and others have had problems... again, everyone is sooo different.

What I would do though, no matter what topics you read here or what you hear from others who have gone through the same reversal surgery... give your surgeon a call, or if he's available via email, let him know exactly what is happening, when the pain occurs, is it every time, just some times, do you feel like you have to push, or is everything working normal other than you get this sharp pain. It could be something as simple as nerve endings are still repairing, regenerating so the area is ultra sensitive. Muscles that haven't been needed for some time are now having to retrain themselves on how to work... and nerve endings are always super sensitive after surgery. So, my uneducated, "I'm not a doctor, nor do I play one on tv" thought would be that I'm sure it's not unusual.... but when in doubt, always check with the experts... in this case, your surgeon :)

Cheryl

AncientTiger's picture
AncientTiger
Posts: 130
Joined: Mar 2011

Here's my better half: My Guardian Angel

Thanks Cheryl, and everybody, for the warm welcomes. Much appreciated :D

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

You are right.... Annie looks like an Angel that anyone of us would love to have her on our team :) :) You've got yourself a winner, Sam! Three gorgeous children and a gorgeous Angel of a wife.... you have no need to ever be sick again, but if, just IF a problem pops up here and there... look at that team you've got on your side! WOW!!

Uh... but it's about the fashion statement when you were in the hospital . Blue is your colour but you need a new hospital fashion designer . That look is just soooo not you :D :D

Cheryl

khl8
Posts: 810
Joined: Nov 2009

I have had an illeostomy and my reversal was sept 09. and I still sometimes get pain at the exit point as well.

Kathy

AncientTiger's picture
AncientTiger
Posts: 130
Joined: Mar 2011

Yeah, not sure what I've done in my lifetime to have earned such a wonderful crew, but here they are, and I wouldn't trade 'em for ANYTHING.

Thanks Cheryl :D

And thanks for your reply Kathy... I've read on these boards about folks who have had radiation treatments and had resulting pain, but that's not what happened with my exit point.. just the chemo then the reconnect. Heck, I've even wondered if it might be your garden variety hemorrhoid, and it's just something I've never had to deal with before... aw well.. something to talk about with my surgeon at the next appointment ;)

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

I cant answer your question either I got the permanent Colostomy version of recovery. But I enjoyed reading your post and am happy your on your way to much better days as am I. You have a beautiful Family. Cheers,
Tom

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