J-Pouch Oct. 21st :(

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JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 10/14/2008 5:00 AM (GMT -6)   
Well, its that time. Next tuesday I will be taking a short ride to Mt. Sinai in NYC to have my large intestine removed. Im a 33 yr old male and I have had colitis for 10 years and in may they found LGD. So here I am. My surgery was supposed to be september 30th but I broke my collarbone mountain biking. Anyway, I keep waking up in the middle of the night in a state of panic. Im really scared of whats to come. Any advice would be greatly appreciated. I know there are no miracle answers here its just that this is getting real now and im freaking out. Thank you
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 10/14/2008 6:51 AM (GMT -6)   
I think you will wish you hadn't put a sad face in your title.

I had surgery at the same age, with the same years of disease, for the same reasons. Step 2 was July 1. Last weekend I went to New Orleans, where I took a cab ride across the city to work on a Habitat house, presented a paper at a conference, went out for dinner, and walked around the French Quarter for hours and hours without needing a bathroom any more often or more urgently than a normal person. I could not do any of that with the disease. It's not perfect, but if I had really understood how much it would improve my life, I would have done it about ten years ago.

And if that doesn't get you, remember that you're doing it to save your life, not just improve it. No regrets on that one!

Are there specific things you're afraid of?

JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 10/14/2008 9:54 AM (GMT -6)   
Thanks for the reply Charlotte, I guess the whole thing scares me. Learning to live with an ostomie, the pain of surgery, reality hitting me once im conscious. I try to tell myself that I have been sick for ten years. I had to leave the fire department (i was a volunteer fireman), I lost a really good job, friends moved forward while I was stuck trying to live my life (panic attacks, depression, fear of leaving my house). I created my own little world where I made all the decisions. But yet in my head I adapted so well to colitis that I forget I that I run to the bathroom 5-8 times every morning. Its normal to me now. In reality thats far from normal. I dont know what the future holds for me with this upcoming surgery. I want to move forward with my beautiful girlfriend, I want to start our lives together. I hope this surgery does that for me. I hope its all steps forward, even if they are baby steps. I understand that there can be complications. Hope mine are minimal. My priest blessed me last night and I literally have hundreds of people praying for me, so I figure I got that going for me :)))))
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 10/14/2008 11:37 AM (GMT -6)   
I think you're totally right about how well-adapted you are to being sick. I definitely was. If you can be at all excited about this, you should get excited about having a big area of your mental attention (the area that used to be occupied locating bathrooms) freed up for other things! That was true for me right away, even with the ostomy, so look forward to it soon!

I bet you'll do great with the ostomy. I tried to take the attitude that it was just another part of my body, that I needed to be responsible for it and take good care of it, but that I also needed to cut myself some slack--I didn't know how to wipe my butt when I was born, and it takes a while to know what the ostomy needs too. It also helped to to think of the output not as s#$%, but as wound drainage--somehow it helped me to acknowledge how unusual it was without feeling the stigma of having s#$% in weird places. It is a little shocking to see intestine coming out of your abdomen, but I really think that's evolutionary--we are built to be alarmed by seeing gut outside of our bodies. I'd have a glass of wine before I did a barrier change. On really good days I felt like the ostomy showed that I was tough and a strong fighter, and that made me feel better about myself and what I had been through.

Waking up after surgery will probably be less traumatic than you think. I remember being pleased to be alive; I didn't even think to look at the ostomy until the nurse first came in to take care of it the next day. I was not in pain (and never really got into pain later--did not use the pain pump or take any painkillers--my surgery was laparoscopic), but did feel a little anxious at first, and some nausea later. I told the surgeon ahead of time that I needed an order for anxiety meds; then I could just ask for them and not have to wait for the doctor to be called.

I know it's scary. But on the other side of it, I also know that many of my fears were not realized, and that even the ones that were weren't as bad as I thought they might be. When I read on the UC board now I am just overwhelmed with sadness for people who continue to suffer symptoms of this disease and wait for "a cure" when there is a cure available right now. As a culture, we are way too attached to the idea of s#$%ing through our rectums. People (including me, in the past) will tolerate such unbelievable limitations on their lives in order to keep doing it. I hope that if things go awry with my j-pouch, I will be able to remember that--I don't want to spend any more time in my life looking for bathrooms.

Hang in there, post again if you've got more questions, and definitely drop a line when you get out.

PS One major thing for me--they sent me home with clear ostomy bags. Maybe someone out there wants to look at her s#$% all day, but it isn't me. My mindset improved dramatically when I got the opaque bags--if I had it to do again, I'd make sure I got some from the hospital and switched over right away.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/14/2008 11:44 AM (GMT -6)   
Dude, I'm 22 and I've adjusted to having an ostomy. Knowing it's only temporary helps. But it's really not that bad and sure as hell beats worrying about whether I'm going to make it to the bathroom or not. I've come to terms with the fact that my bathroom habits will never be normal, but I'm ok with going several times a day as long as I can control it. Hopefully that'll be the case after my reversal next month...For now things are great and I have no regrets. Don't worry too much about the pain from surgery; by the time I went home from the hospital (6 days after surgery) I was only taking one pain pill a day and I have a very low tolerance for pain.

I was exactly like you before my surgery, I couldn't go to school, had to quit my internship, lost a lot of friends, couldn't go out, couldn't take road trips. It sucked big time. Now I'm doing all those things I couldn't do because of my UC. I was walking my dog the other day and my dad locked the door when he went to take a shower so I was stuck outside for 20 minutes. Before I would've had a panic attack and probably an accident just from worrying about it. Instead I just enjoyed the nice warm weather outside for an extra 20 minutes. Simple things like that make it all worth it.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/14/2008 5:28 PM (GMT -6)   
Charlotte Gilman said...
PS One major thing for me--they sent me home with clear ostomy bags. Maybe someone out there wants to look at her s#$% all day, but it isn't me. My mindset improved dramatically when I got the opaque bags--if I had it to do again, I'd make sure I got some from the hospital and switched over right away.
I was sent home with the clear ones too, but I actually like them. It helps me figure out how foods affect my output. Once I get reconnected I want to be able to already know which foods to eat to make my stool more solid. Granted you can see it when you empty the bag too, but I also like being able to see it in the bag because liquid tends to splash more when it comes out...
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/14/2008 7:58 PM (GMT -6)   

life begins after surgery...you will be able to do ALL the things you did/wanted to do, but couldn't because of your disease.  I know people who mountain climb, sail, ride horses (me), swim and more since they've had surgery.  Recovery is different for everyone and will differ if your surgery is lapro or open, but it isn't bad...you have so many possitives to look forward to and EVERY DAY is better than the one before:)

As to the pouches, I definately like opaque w/filters (but, not all filters work well...so find the one for you!).  Get sample of products from the big companies - the national ostomy assoc lists all of them with their websites...I think it is www.uoaa.org

Good luck and let us know how you are doing!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/14/2008 8:37 PM (GMT -6)   
Best of luck to you --- I've had a permanent ileostomy since 1984 - no regrets! I can do about anything I want. You will too once you recover. Keep a positive attitude. Good suggestion about having anxiety meds on your charts so you can take them as needed. Sometimes they help better than the pain drugs anyway, & less nausea. Please let us know if you have more questions. I think you've gotten some really good responses.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/16/2008 4:35 AM (GMT -6)   
Ken,

I was diagnosed with Crohn's when I was 28 and was really scared to have my large intestine removed. But, I have to tell you honestly, I wish I would have done it 7 years earlier!! Do you remember what it was like to be healthy? Well, that's how you're going to feel again! I promise!

When I finally decided to have surgery, I remember saying to my family, "What am I holding onto here? A diseased colon that could lead to cancer? I want it out of me!" I also had Crohn's in the rectum, so I had to have it removed, too, which meant I was not a candidate for a j-pouch. But, you are, which is great!

I was out driving and grocery shopping two weeks after my colectomy, so while it is a big surgery, it won't keep you down for long! smilewinkgrin

If you have any questions about anything, please ask, and we'll do our best to ease your mind before you have surgery on Tuesday.

Take care,

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


jellybean1887
Veteran Member


Date Joined May 2005
Total Posts : 1362
   Posted 10/16/2008 7:23 PM (GMT -6)   
I had my colon removed on September 27, after spending pretty much a whole month in the hospital. I was scheduled for surgery on a Tuesday, and the Friday before the surgeon came in my room and told me he had an opening, did I want to do the surgery that day? I did, and it was a good thing, since by the time they started, I was perforated.

One thing I would ask for is a nerve block. I wasn't able to get a nerve block until after my surgery because I had a heparin shot the morning of my surgery. I think I would have had less pain right after if I had been able to get the nerve block before the surgery as opposed to the morning after. Once I got it, it really helped to control the pain.

I have done more in the two and a half weeks post op than I think I have done in the past year. It is definitely worth it. For me the ostomy wasn't that hard to adjust to but I haven't decided if I want to reverse it yet or not, but I've got plenty of time to decide. Good luck!
"Of one thing I am certain, the body is not the measure of healing - peace is the measure. ~George Melton~"

Current Meds include:Sulfasalazine and Zofran. With a new doctor, forced to retry all the meds that haven't worked in the past :(


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/16/2008 8:53 PM (GMT -6)   
There's a guy named Vin who just posted on here that he lives in NJ, has heard that Mount Sinai is a great hospital, and was wondering if anyone here could give him some feedback. I told him that you are going to have surgery there on Tuesday, so maybe you two can connect.

JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 10/17/2008 8:42 AM (GMT -6)   
I would be more than happy to talk to him. I was wondering if anyone was prescribed medication to calm them down the morning of the surgery. I really want to go to the hospital in a relaxed mood. Thank you all for being here for me :))))))))))))
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74

Post Edited (JrNYC) : 10/17/2008 8:59:10 AM (GMT-6)


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 10/17/2008 10:08 AM (GMT -6)   
just out of curiousity - can someone please tell me what a 'reversal' or take 'down' and 'step 2' is? i just would like to know so i can understand.
thanks.x
Karen - 46 yrs old
1997: Diagnosed IBS
2003: Pelvic floor repair surgery
2006: STARR surgery for mucosal prolapse/Obstructive Defaecation Syndrome.  Diagnosed with slow transit.
2007: No difference. Had MRI scan showing a partial volvulus 
2007: Had sigmoid resection which resulted in immediate colonic inertia
Now need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  In discomfort/pain most days.
 
If they had diagnosed me properly in the first place - i probably wouldnt have needed all of the above surgeries - makes me mad - Typical!!! 
NOW ON WAITING LIST FOR A TOTAL COLECTOMY -
SHOULD BE EARLY 2009 -
Scared as told it is 50/50 i could be incontinent and need a bag....


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 10/17/2008 12:04 PM (GMT -6)   
Thats when they remove the illeostomy to allow your small intestines to function normally. No more bag, you use the bathroom normally
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/17/2008 7:58 PM (GMT -6)   

Ken, if you call your surgeon's office on Monday, he will probably call in a prescription for some anti-anxiety medicine for you if you ask for it. They will also give you some right before they put you under for the surgery, so you will be in la la land.

When you wake up from surgery, you will be in recovery, so don't hesitate to speak up to the nurses for immediate pain medicine. If you get the pain under control quickly, it will make all the difference those first couple of hours.

Also, I would choose just one person, like your girlfriend, to be by your side when you get out of surgery. You will want her there to assure you that everything is okay, but you won't want your entire family there staring at you or trying to talk to you. At least, that's how I felt after my surgery. I didn't mind seeing people the next day or talking on the phone, but that first night, I just wanted my husband there.

:-)  Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

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