Meet & talk to fellow OstoMates Support | Friendship | Relationships

Count down to reversal...

Thu May 03, 2012 9:31 pm
This is a great community. Consider joining.
Dave- you'll have to send me some Canadian pennies....I can only pay in US cents Wink
These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Fri May 04, 2012 12:02 am
Darla, I'm not up to speed on the current exchange rate, but I'm fairly certain U.S. cash is probably still worth a little more than Canadian right now..so, even if I sent them for free I would probably end up owing you money!

They came the the realization that they not only cost more than face value to produce, that more people hoard them than spend them. We aren't the first country to do it, so it's nothing new.

Having said that, if you're serious, send me a private message and I will see what I can do.
Past Member
Fri May 04, 2012 1:57 pm
Thanks for the informative responses, I really do appreciate it.  There seems to be a little less mucus today, and I've been doing some "exercises" to gain more control.  I still don't pass any real stool since the first time.  I don't know where that came from, and I was on a clear liquid diet then too.  I'm wondering if is was residual stuff still hanging around.  If I'm not moving anything by Monday, I'll call the surgeon and see if I should take a stool softener.  Anything would be thrilling!  
He cut me wide under the stoma site, so with all that and the stoma site being stapled, I'm quite sore on that side.  
Thanks again for sharing your experience, it's very helpful.  Glad everyone is doing well.

Just a little note, went to the toilet, and there was a little splash!  That's a first!! Progress!!!
Fri May 04, 2012 4:34 pm
"Splish Splash I was takin' a crap....'long about Saturday night!"
SmileWink

Sorry, couldn't resist!


Sounds like you are making a little progress, Ken.....just continue to watch things and take notes.  I actually have a dry erase board in my bathroom which records my "activity"; that way I can keep track and see if there is an unusual pattern developing or anything else that may suggest a looming issue.  I am sure my visitors get a confused look on their faces when they come in and see "Welcome to Pooville" written atop a dry erase board in the bathroom! Wink

Have a wonderful, relaxing weekend. Hope you can get out a little and enjoy some fresh air and sunshine! Smile

Darla
Tue May 08, 2012 10:01 am
Darla you crack me up.  Thanks for the much needed levity. I have been following your progress since we had our reversals around the same time. I am down to 6-8 times per day which I agree is better than the 12-15. My urgency is also better and I can delay things a bit when I am out.  Hurrah. Hang in there Ken. Sometimes it does take longer than you expect. I did have a colonoscopy a few weeks ago just to see if there was scar tissue or a stricture.  Everything looked good and the biopsy of the anastamosis was normal. There was however narrowing at the site  where the staples are which explains the small diameter stools. Not sure if I want to pursue anything further or not as I would now have to go to a colorectal surgeon. The GI guy said he didn't have enough experience with my situation to help me manage things and my surgeon is well - a surgeon and not a GI guy. I am feeling so much better after hitting the 3 month mark that I am thinking things will get even better down the road.  Still so much better than the bag - I had an awful time with that.
Patsy
Tue May 08, 2012 11:33 am
I'm doing well allso I had my reversal Jan 8 I'm down to four times a day on the average but when I have to go I have to be fast into the toilet. I'm glad you are doing well and hope you can reduse the times you are going. It sure beats the bag though
Tue May 08, 2012 7:36 pm
Yes, I did have a partial blockage. I hadn't passed any real stool by the 4th day and no gas either. I did have mucus passage and tried to get by on that, but alas... by the 6th day, I was vomitting 1,200 cc of ugly green bile with very, very sharp and recurrent pain at the surgical site. Still have no idea what caused the stenosis at the reattachment site, the 2nd surgery did the trick!

They kept my NG tube in for 5 days post 2nd surgery. I was begging them to take it out. I had gas on the 6th day and passed pebbles the next day.

When I got home, I had the typical bout of constipation. Not a damn thing for a few days. I was real worried and considered prune juice, but my darling husband asked me to consider the effects of the pain killers and lack of IV hydration.  

Now, I'm right there with Dave. My bowels are a complete mystery to me. It's such a complete opposite of knowing exactly how long it took what went in my body to come out. I could manipulate the consistency, color, and frequency with just a bite. Strange territory in this refurbished colon. Wink
Tue May 08, 2012 9:12 pm
I am learning to control my output by what I eat. I was doing good till  I had a bladder infection at easter. the antibiotics through a wrench into the works but I am getting back on track. My Dr says it will be up to a year to get normal again but I iam to prove him wrong by six months if I can. If not well I keep trying
Past Member
Wed May 09, 2012 4:38 pm
Well, my BM's are coming along real well!  I go a few times in the morning, and maybe once or twice in the evening.  No more mucus spilling out!  But now I have a problem at my stoma site.  Severe pain, like a knife.  I see the surgeon tomorrow, I'm hoping it's just a passing thing, but maybe a hernia.  When I got my ostomy, I had a problem there.  But it got better as time went on.  Hopefully it will be a little better tomorrow.
Wed May 09, 2012 9:34 pm
Hi BluHarley,

Glad to hear things are settling down now. Im pretty much back to where I was before this all started for me and very thankful for it.
The pain at the stoma site is something I didn't have. My site was left open so I was tender when moving around for weeks, but never a pain like you describe. Once again, you're doing the right thing and seeing the surgeon. Here's hoping it's nothing that won't go away on it's own with time.
You're on the mend..keep it up!

Dave
Past Member
Thu May 10, 2012 4:53 pm
Thanks Dave!  Glad you're back to your world.  I have an infection at my stoma site.  He poke a hole and drained it (ouch).  He took some cultures and he'll prescribe antibiotics once he get's them back.  I'm just thankful my guts are ok!
Thu May 24, 2012 10:06 pm
Hello all.
I haven't posted in a long time it seems. Life has been slightly hectic with returning to work and getting used to a routine after being off for nearly a year.
I guess that's what motivated me to write this evening.

One year.

It is one year ago today that I got sick. How things have changed in that time.
I went from being fat, dumb and happy one hour, to on my way to the hospital in the worst pain I have ever felt in my life shortly thereafter.
I woke after ten days in a coma to find myself with tubes coming out of every orifice, and some new holes they created just for the occasion. I was paralyzed from the knees down and in both hands. I spent 50+ days in the hospital, a relationship ended, I couldn't walk, and I was not working.
Fast forward 9 months. The same surgeon that performed my ileostomy did a reversal. He spent nearly 8 hours putting humpty dumpty back together again. I was out of the hospital in just over a week.

Make no mistake, the bag saved my life, and at one time I even pondered not having a reversal..the nightmares of the original hospital stay still haunting me, but I had the chance and thought I owed it to myself and those around me to at least try.

Here I am..13 weeks post reversal. What a difference. I was fortunate enough to retain about half of my large intestine, and even though he spent hours cleaning up adhesions and scar tissue, I am, for all intents, back to normal. Yes, some days what I eat doesn't agree with me, but I can live with it. I am back to work, slowly working my way up to 8 hour days.

Why am I writing this, some of you may ask? Even though I may not post as much publicly here as I once did, I do read a lot of the posts here. I see a few new members and lots of questions and fears. The same ones that I had not so long ago. I just wanted to say to them dont be afraid, ask your questions. There are so many here that have lived through this and are more than willing to share their experiences both good and bad.

I just wanted to say thank you to everyone that I encountered here that offered advice, guidance and a place to vent. You have helped me in ways that you can not imagine.
I consider myself one of the lucky ones, I guess. I came through a condition that is usually caught earlier and even then carries a less than 50% survival rate.
I am here today thanks to a brilliant surgeon, my family, and I am sure some help from the man upstairs. I still walk with a cane, and my feet hurt, but as they say, pain is life's way of letting you know you are still alive.

Im not tryng to rub it in anyones face that I had a successful reversal, but simply to share  that it is possible. In my humble, non medical opinion, talk to your doctor and if  you have the chance consider it. If you don't have the opportunity for whatever reason, having a bag isnt the end of ther world.

There is hope.

Good luck to everyone and thanks for all the support.
Thu May 24, 2012 10:36 pm
Thanks for sharing. You info will definitely help others make some hard decisions. Be well!   PB
Fri May 25, 2012 9:08 pm
You have come back with a vengeance, dear friend!  Just remember to always embrace life, even if at times you don't understand it, and remember that we are not promised tomorrow....so make the best of TODAY!  As for walking with a cane....hey, House Md. Wink does it and if anyone can make cane-walking sexy, he can!  You can always tell people your cane has super powers.....and then dare them to make you prove it!

I am so thankful that your recovery is going well.  You are an inspiration to all of us. Smile

Darla
Sat May 26, 2012 12:10 am
Thank you my friend.
I count you as one of those people that has helped me so much. Each day is a challenge, yet each day I seem to feel better and better.
I laughed out loud when you mentioned House and his cane. Inspired by him and a trip to Wal-Mart where i found duct tape with a flame motif, I invested in a roll and promptly decorated my cane with it. It gets some looks, but most people nod in recognition once I explain its origin.
I used to watch that show weekly, but then got away from it the last couple of years. I was reminded by a facebook feed the other day of the final episode and did watch but found that some things didnt make sense or register with me having been away from the story line for so long.

About the only super power my cane has is the little fold down ice spikes mounted on the side. Saved my butt more than once! Someone actually asked me if it was a kick stand..

Thank you again for the kind words.

Keep smiling.
Mon May 28, 2012 1:27 am
You know, I have neither seen nor heard of a cane with ice spikes.....not a real need here in the land o' no winters.....but I can see where you would find it a lifesaver in the colder months! Smile

When I was working and traveling for my job, I had the pleasure of visiting the Boston area many times.....also Chicago and NY.  On one of my trips to Boston, we had especially bad weather upon landing....snow and ice everywhere and they made us walk from the plane to the terminal without the benefit of pulling up to the jetway first.  Here I was, in high heeled boots, trying to maneuver myself as decently as possible, while everyone around me could obviously tell that I was NOT accustomed to walking on snow and ice.  A good friend of mine who was also along on the trip suddenly grabbed my hand and shouted (very loudly) "TEXAN ON THE ICE!"  Everyone around me just cracked up laughing....including me!  Flat, rubber bottomed, well tractioned shoes became my best friends on repeat trips to the Northern states during the winter months!

I've had to walk with a cane during several bouts of bad lupus over the years....including my pregnancy with Aly.  As a very young woman in her early 20's, I got a LOT of stares hobbling around like an old lady; but it sure beat the risk of falling and harming my precious little one! Smile  My mom now walks with a cane regularly, too, so methinks i am going to try and find a really decked out version for her to carry on her travels!

Keep on truckin' with that "House" cane, friend.  You never know....it may be the next chick magnet! Wink


Darla
Wed May 30, 2012 1:02 pm
It was great to read your post, Dave, and I appreciate the update and all the positive words. You have encouraged me so much during my own recovery. Life is such a gift even if there is a new normal. I am doing much better as well and am at the 4 month mark. My surgeon is wonderful and still wants to follow me.  I guess my case was rare and perhaps he is learning things from my recovery that will be helpful in the future. I go back about every 4-6 weeks and most of the time it's to talk. He is very good about explaining things. I just wish I knew why this happened to me, but no answers. I had NO history of any GI issues and no symptoms prior to the abscess. My GI doc didn't really want to follow up after the colonoscopy as he said he didn't have experience with reversals and worked more with Crohns and UC and IBS - none of which I had. I hope you'll post now and then and I will continue to think about you and pray that you will get better and better.
Patsy
Mon Jun 04, 2012 5:22 pm
Cains with Ice cleats are a must up here in the Yukon as we have 8 months of good sledding and 4 months of not so good
Mon Jun 04, 2012 8:42 pm
Hi Patrice, and thank you for the kind words. It has been my hope that even a small portion of what I have written has given someone even a glimmer of hope. I know that the things I read here were so helpful to me when I was looking down the barrel of another surgery.
It will be 15 weeks tomorrow that I had my reversal. Other than decent scar from the ostomy site, and a thin red line down the centre line incision, I have escaped relatively unscathed.
I had a pretty nasty scar from the emergency surgery but my surgeon did a fanatastic job of cleaning things up this time.
The Infectious Diseases team at the hospital where I was transferred to had remarked that they wanted to follow me since I was such a rare case, but once I was discharged last summer I never heard another word from them.
They never could offer an  explanation as to what got me here in the first place, saying only that my condition is something usually seen in much older men, and even then usually those that have underone radical chemotherapy.
I do have a family history of cancer, but have tested negative all around myself. The saving grace in the whole thing is that since I no longer have the part of my bowel usually effected by such things, I have a nearly zero chance of it happening again.
Having said all that, it's off to the neurologist tomorrow for more testing. I still have numbness and burning in my feet and legs as a reminder of my time in a coma. They will be testing me tomorrow to see if how far, if at all, the nerves have regenerated. Fingers crossed.
I digress, often..
It's wonderful to hear that you are doing better and recovering. Please keep posting yourself as we all like to be encouraged by positive news.


Oh, and to Yukon steve, the ice cleat on my cane has saved me from a nasty spill more than once. Yes, it's summer here, but I have left it on my cane, as some people still ask me if it's some sort of weapon..
Thu Jun 21, 2012 10:06 am
HAPPYH9-

If you are still here, is your first J pouch surgery still happening today?  Hopefully you are IN surgery and won't answer me til you get out....I had today marked on my calendar as "your day"...

SO Hope things are happening for you, my friend!

Please let us know how you are doing!

Love and Prayers!

Darla
Past Member
Fri Jul 06, 2012 1:32 pm
Hi Darla and everyone!

I have not been on this site since mid April and was so happy when i read your post, Darla! Your post was the last one, too! Coincidence??

You marked my surgery date! Since people like you praying for my surgery, my surgery was a success, Thank God! It was part 1 of 2 so I still have a bag but J pouch was created and connected to anus. Loop ilio was created. I was discharged in 3 days! surgery took only 3 hours. My surgeon told me that in his 35 years of practice, he sent no one home after 3 days in this kind of surgery! I did not have any scar tissue so surgery was quick. It was supposed to take 5 hours.

so that was good but the reason i could not response till now is because I have had sciatica pain.
I still have but at this point mild. I never had this before. It started a few days after surgery. It can be so painful I can not walk! It's painful to sit or stand and only comfortable position is laying down. I could not face PC to post. This site does not let me post from iPhone nor iPad. I could still use those in laying down position but not PC.
There is not much I can do with this pain...I could go Chiro or physio or accupanture but with my newly created ilio, I can not... Out put is so liquid, constant, unpredictable... I don't want to get naked...

Before, when I had end ilio, there was a good 2 hours I don't have output and I could know when that will be. It was usually 9Am-11PM and again 1PM to 3PM, 7PM-9PM kind of time flame.
Now it's so cinstant even changing pouch is a challenge.

back to sciatica pain, this pain is actually bigger than surgical pain. I am stuck in my house, but started to work a little since I work from home.

I have a pouchgraph x ray appointment in July 16th and appointment with sergon on 24th. We will discuss third and final and most exciting take down surgery date! I was told 2-3 months after. The thhing is my surgeon will be on vacation till September, arwwwww!!! That means surgery won't be happening till then... I wonder is other surgeon in his team can perform take down. There are 2 more surgeons in his team.

This is my story.

I read all the post from I left on in April. It's always nice to come back here and get inspired! Everyone is positive and seems doing well in life. That's wondeful.

I will come back again. After I got better health wise, work got so busy, crazy busy. Plus two daughters to take care. Right now, I am only working short hours, I had time to come back here. I have to go now, siatica pain is coming back...I can no longer sit in front of PC. I have to lay down....

Always Happy.

ciao
Fri Jul 06, 2012 3:21 pm
Hello Dear Lady!

Sooooo happy you are here and that J-pouch surgery was a success!  Only ONE more phase to go....operation take down! SmileSmile

I am so sorry, however, about the sciatica pain.  I have heard that this can be some of the worst pain ever!  I wonder if they hit that nerve during surgery and it was damaged or compromised in some way?  I know that both Dave and I have problems with our left sides (I think Dave's is the left?) due to neuropathy since our surgeries.....forgive me Dave if I am not completely accurate here.....and I had almost complete numbness in the left arm/hand for about a year after my "big" surgery (the emergency one)....it is SLOWLY returning and I do mean slow!  But at least it IS returning!  So are they giving u anything for the pain?

I totally understand about not wanting to get naked with the constant output.  I know that when I had my bag, it was also least active in the mornings about 9-11am and then again about 2-4pm.  After that, it was pretty darned active at night!  ALL NIGHT LONG.  And, altho I still get up to use the restroom several times per night, I have gotten used to it now and can make it without so much worry about an accident.

Here's my recent update:  It has now been 5 months since my reversal, and I can honestly say that I am doing better than I ever thought possible at this point in time.  I still take my Lomotil and fiber faithfully, and only take the Tincture of Opium at bedtime, now, and I am down to between 5-10 bm's per day, depending on what and how late I eat.  I am coping well with the lupus symptoms which aren't too active at present, and I am getting out and doing things ALL the time now with no worries except for a slight limp on the left side and trouble with curbs and stairs.  I can say that's a stark improvement over the bedridden, sick person I was just a year and a half ago!  So see, after your take down I am confident that you will bounce back as beautifully and boldly as you possibly can.....and I am SO PROUD OF YOU for your courage, grace, and determination to do whatever it takes to be that GREAT WOMAN who works hard, plays harder, and is such an example for her 2 beautiful girls! Smile  Bag or no bag......you are a winner!  Way to go, girl!

Please keep us posted as much as you can without compromising your comfort.  I don't want you to hurt trying to keep us informed; only when you can do so without a lot of discomfort and pain!  I will continue to pray for you and yours.

Love and Prayers-
Darla
Fri Jul 06, 2012 3:28 pm
Try using your iPad. That is all I ever use! And persevere, it will only get better! I have Crohns and have been so much healthier since I had emergency surgery for a perforation...colostomy, reversal this past January and haven't felt this great in many years. Hopefully azathioprine will keep me in remission! Jean
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