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Ulcerative Colitis
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Posted 10/13/2010 12:23 AM (GMT 0)
I have been suffering from UC for around 8 years and it has gotten worse over time.  I have have many many attacks and have gotten to the point this year to where I have been sick the entire year, have no energy and have had massive pain and have not really eaten in almost 3 months.

I have been on TPN since Aug 7th, started remicade which sorta did some good but not to the colon which is totally inflamed and my lower tract. Barely been able to put down broth and justs now just getting down cream soups without instant pain.

I spend Aug 3-13th in the hospital, got out had a small window where I ate some real food then went backwards into major pain especially in the morning and then it grew to throughout the day till I could not function again at all.  During this time until I came back to the hospital Sept 29th I was barely able to put down 6 oz of broth in a day without painful reactions.

Talked to surgeon today and will get the colon removed 10/14 and then they can take a look at my angry colon. He would really like to do a two step at once due to my age and basic health.  However  the other surgeons are more on the err of caution so they can really determine my situation as there is still some minor confusion if I also have some chrons.  So  in order to hopefully save my job I have to elect for just the colon this time around and be safe than sorry.  If I tried to get it done at once then I may not have surgery for a couple plus weeks and still no guarantee that they will do it at the other hospital as the other surgeons want to evaluate before going the two step at once route.

I am excited and scared to be 40 and lose my colon is a horrible thing but I need my life back as I have gotten to the point where I cannot accomplish anything and am always tired and attacks whenever I am planning a trip, any excitement and just about everything else.

Ok that is my winded intro I have found some good info on this site as I just found it about 5 days ago.  I really appreciate the sharing of all of your situations and chronicals of your surgery experiences and results.  I will do this also and keep an up to date healing process to share my experience of this journey.

 

Posted 10/13/2010 12:39 AM (GMT 0)
Good luck to you. Where are you having surgery? Let us know how it goes.

I will be having surgery. I am waiting until January. The last few days I have been feeling terrible, I believe from the 6mp. Extreme fatigue, pain and some nausea. I think it's my sign that I just have to get off this stuff and get the surgery. It helps me not want to chicken out.

Good luck again and here's to getting your life back!
Posted 10/13/2010 1:03 AM (GMT 0)
Hi and welcome,

My 18 year old son had his colectomy Sept, 2009. He had battled UC for two years and had become sicker and sicker. He had his surgeries in three steps. His J pouch was built in January and he had his take down in Feb. For him it was not an easy road but it was SO worth while. Almost immediately after having his colon removed you could see the life returning to him. Within about a month he had more energy than he could remember. He has now had his J pouch working for about half a year and he is doing GREAT. He is healthy in every way, has put on about 30lbs and is living life exactly the way a teenager should. He has almost forgotten what UC life was like!

I wish you all the luck for a quick recovery.

Here's to your new found health!

Cathy
Posted 10/13/2010 1:10 AM (GMT 0)
I had surgery 9 years ago at age 41; it was the best decision. I never got to TPN but was severely ill. You will be fine, in fact you will feel so much better when the colon is gone. I encourage you to also visit www.j-pouch.org, home to more than 6000 jpouchers, ostomates and kpouchers.

Sue
Posted 10/13/2010 1:53 AM (GMT 0)
Welcome to the website - it's awesome. I'm in the middle of this right now. I've had the first two of three steps of the j-pouch procedure. Is that what you are having? Both steps went really well and I'm feeling great. Colons are overrated. It's so nice not having to have all of the limitations on life that I had with UC for five years. I have the bag or "appliance" as some call it until the final surgery in December. I've gotten use to it and it's really no big deal at all. Good luck to you. I'm sure you will be much happier once all of this is over.
Posted 10/13/2010 3:24 AM (GMT 0)
please dont think of surgery as a terrible thing! it's not i promise, its going to be a wonderful thing for you, and you are going to be healthy and do what you want when you want!
so YAY for being healthy soon, only two more days of UC!!! Only one more prep! good luck!
Posted 10/13/2010 3:36 AM (GMT 0)
Scrap girl--it's so good to hear you are doing so well.
Posted 10/13/2010 4:18 AM (GMT 0)
trying this again as it corrupted and erased.

I live in SW Washington in the Kaiser health system however I am having it done at a non Kaiser hospital with a Kaiser doc due to the delays and possible same outcome of 1 step.

My "mom" has worked at this hospital as a nurse for over 26years she knows the surgeon and he is very good so I feel comfortable with him.

I cannot wait to have no more pain and be able to eat food again in another week or so as I have had TPN and broth for so long.. At least the good thing about the TPN is I have had good nutrition so my body will have that going for me for the healing process.

I will follow up over the weekend if I am able to update how it went so others can know about my experience

SUMMERSTORM

I have read alot of your posts and yes i cannot wait, your still on the bag aren't you? are you staying or going for the J pouch I cannot remember what i have read

Posted 10/13/2010 12:17 PM (GMT 0)
Thanks Disneynutt and endingthemadness, keep us posted.

Posted 10/14/2010 3:34 AM (GMT 0)
i have a permanent ileo, so yes i will have a bag forever, and really i promise, even though it sounds gross and scary and weird, its none of those things!
there is a learning curve, like with everything, but once you get the hang of it, its easy!
Posted 10/14/2010 9:13 AM (GMT 0)
Good luck with your surgery today! :o)
Posted 10/16/2010 3:46 AM (GMT 0)
Surgery went very well feel good just feels like i did a thousand situps. Walking around and the stoma is starting to gas a little and my stomach is just starting to rumble a bit. Hope it keeps up so I can put something in me besides enough water to just wet the throught.

Still have to wait for the results from my colon come back so we can find out if I have just UC or UC and chrons. I cannot wait to eat
Posted 10/16/2010 4:04 AM (GMT 0)
yay!! Your disease colon is out!! I have been reading your preious posts and im so glad you decided to go through with the surgery!! I had UC for 10 years and had a total colectomy almost 2 years ago. I was super sick, couldnt eat, weighed 96 pds and so they did 3 surgeries. Eventho i did get blood clots after my first surgery, that is the only bad thing i have to say about the surgeries. The bag was very easy to get used to and being able to eat whatever you want will be great!! i would post something about tips from people who have had the bag, that really helped me. I had to have my bag for a full year and it wasnt too bad but having the reversal was better than i ever imagined. the last year has been the best year of my life!! You have more control than you may think, you can eat whatever you want, no more stomach pains and pills...ugh its great!! I get soo excited everytime i read about someone else being cured of this horrible disease! I spent my entire high school and college life sick, having flares every other month, on tons of meds and im very happy for you!

Keep us posted on your progress!!
Posted 10/16/2010 4:06 PM (GMT 0)
when you say reversal does that mean J pouch made?

I feel great ready to go run a marathon except for my super tight feeling stomach LOL

funny even though I have not felt this great in years.  my stoma is just starting to put out so i am getting closer to eating.  I am soooo hungry it makes it hard to walk as i cannot even drink so this is ,my biggest challenge right now.  If i could just have some liquids right now my blood surgar feels like it is low off the charts so waiting to have it checked a little early as I just got off the TPN. Hell just a few more days or so and no more TPN either. Things right now are looking up like never before.

Once I know what the diagnosis is on my colon near end of next week I will report that will be the deciding factor if I can consider a J pouch at all or not.

thanks for all the support, replies and so forth.  The surgery was a breeze seeing how I was knocked out for it. I have a great big newer room private overlooking the mountain side mount saint helens so it is just beautiful up 7 stories with my entire wall a window so peaceful.

 

Posted 10/17/2010 3:37 AM (GMT 0)
isnt it amazing how you feel healthy right away? how you feel so clean?
that tight feeling will go away,but it will take some time, so dont be upset when it doesnt go away super fast.
Posted 10/17/2010 3:58 AM (GMT 0)
Ending, sounds like you had it done here in WA. Just wondering where at as I am likely heading down that road sooner then later. (Remicade doesnt seem to be helping)
Posted 10/17/2010 3:39 PM (GMT 0)
Kaiser health system had Dr. Otoole do it at SWMC.  Got out Thursday at 5pm and now 830am on sunday oct 17th doing great.  Poop  bag cycling very nicely pushing lots of gas going very well. Of course I have since surgery performed at least 10 20 minute walks so far.

Tightness is going down and have been weening off the fentonal eppy in my back.  Was at full feed of 10 yesterday AM and have them got me down to 7 and doing well.  just keeping a little tight, but not enough to bug. They would llike to get the eppy out of my back today so I am trying to get my threshold lower before that happens.

I feel like a million bucks now just trying to get them to give me some freaking fluids to drink as in clears. I feel my body is ready to try.  And really having a bagg on my stomach is no big deal.

Only issue I am a little worried about, I did not have regular pants or underwear on when we chose the stoma spot I am fearing it is about 1 inch too low.. I do wear a lower waisted pants, but it may not be low enough.  Otherwise things are healing well and I am just stoked!!

Man when the gas goes it scares ya sometimes LOLOL it is going to be funny in front of customers when I pass gas through the stoma in the office hahahaha

Posted 10/18/2010 12:05 AM (GMT 0)
The gas slows down a lot after a while. It was a lot more for me in the beginning. Once you have a lot of output going through there the gas will lessen.Im a waitress and i though my customers were at eye level with my bag and they might hear it but they never did. Atleast i never did! I didnt mind the bag at all and im a very skinny petite girl that wears tighther shirts and you could never see it or anything but mine was super low too so i just had to wear low rise jeans for the year i had the bag. Its very interesting to see the stuff that comes out of stoma! sounds gross but i ate blue cotton candy once and it was totally blue! it was super hilarious when my bag was full of it!
Posted 10/22/2010 3:57 PM (GMT 0)
been home now since the 20th trying to get body used to eating again seeing how I have not eaten in sooo long.  I look like something from a concentration camp I lost so much weight from being sick.

Hospital stay was 20 days, but am starting to feel a little better as I keep post surgery pain control somewhat at bay.  Once I get through this healing things should be pretty darn good.

No more medications to screw me up and getting used to the bag and getting better at working with it.  Only issue is getting through the pain and being on morphine. I am trying to cut it down a little and take motrin now that I dont have to worry about flares taking antibiotics, over the couter pain meds etc.

Surgeons seemed to do a good job as really I feel good annd the insision goes just below the belly button and then a couple inches up on top so very clean.  Should have just a little scar and with my hairy chest and belly once the hair grows back it will not even be seen.

Only bummer now is I have a great house and shop, but my house only has one bathroom. Typical 70's ranch so it is a little tough on the wife when I empty the bag. LOL

Really wierd I have a sensation of having to make a normal bowel movement and the doctor said sooner or later I will have to expell it as there is a little something that is in there. Hard to get my mind set to have a little normal bowel movement when I am on the bag.

 

Posted 10/22/2010 4:19 PM (GMT 0)
Thanks for sharing this with us! It is very helpful to know that surgery is not the end of things but rather a new beginning.

Do you have any diet requirements right now? Anything you are suppose to be staying away from?
Posted 10/22/2010 4:44 PM (GMT 0)
did you get the pathology report back yet, is it Crohns or UC? What's next for you? sounds like you're doing great, & I'm really happy for you! Are you having any skin irritation from the adhesive? Is a OCN nurse coming to your house? Are you sleeping alright, is your bag gigantic when you wake up? Keep up the good healing, & the good posts!

Posted 10/23/2010 3:35 AM (GMT 0)
No real diet restrictions just gotta be careful as before with foods that cause gas and odors. So really eat certain things in moderation when it comes to those as pretty much a normal person.

I am getting my body used to eating again so I am being a little careful for it to get used to it again. Today I had yakasoba with chicken and for dinner had home made cheddar scallaped potatoes, turkey cutlet and some well steamed carrots.

I am going to wait until I am adjusted to maybe have a little pizza LOL.

It did get the report back and all they found was UC in the disected colon so that is good news. I don't have any skin irritation from the adhesive far as I have seen as I have only changed the bag maybe 4 times since surgery. Seems to stick pretty good no leaks and I still saran wrap and tape around the bag to shower as I dont have the right patches or what have ya gottal do more learning on that.

I am going to the hospital on Monday the 25th to meet with the OCN to discuss bag options and all the other stuff.

My sleep is a little iffy however I did sleep real good last night as I took it real easy and kept my pain under control. I was able to sleep on either side and cuddle up to my fiancee which was nice.

After about 4 hours I woke up and emptied the bag as it has some movement and gas in it but not gigantic. I empty it often as I dont like a big swinging pile on my belly. Plus with the adjustment I am having gas too until things settle and hope it settles down a bit.

Had I been able to accept having a bag back in the begining of August I would have not lost so much weight as I was only down about 12-15lbs versus about 30lbs as I am now and they were ready to do it and I backed out.
Posted 10/23/2010 9:52 AM (GMT 0)

Endingthemadness said...
Really wierd I have a sensation of having to make a normal bowel movement and the doctor said sooner or later I will have to expell it as there is a little something that is in there. Hard to get my mind set to have a little normal bowel movement when I am on the bag.

It won't be a normal bowel movement, you'll probably just expel mucous. Don't worry if there's a little blood in there too - all completely normal :) It just shows your rectal stump is still doing it's job well and making mucous which used to help the poop slide out.

Best of luck with your recovery and your new life :)
Posted 10/23/2010 2:11 PM (GMT 0)
You may indeed have a bowel movement with your temp ostomy. It's because your ostomy is a diverting one so some waste passes to your jpouch/rectal area while the majority passes through the ostomy. Don't be surprised to see mucus, blood, or stool from your rear.

Sue
Posted 10/24/2010 3:57 AM (GMT 0)
tuck the bag up into your undies and tape the top to your stomach and it wont swing around like that
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