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LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/18/2011 9:51 PM (GMT -6)   
I am 26 and have posted a few times on here. I thought my appts were going steady to get me in for the colostomy sergery but due to timing I will be going in Monday morning to the ER to check in and get admitted. Not sure how many days I'll sit there until the surgery actually happens.

Once I wake up, I have no clue what to expect. Drs haven't been much help as they just say "everyones different"

-how soon will I be able to sit up on my own? And the standup.
Then obviously comes walking somewhat comfortable.

-I am a small female, 26, 5'flat and typically 105-110lbs although I'm only at 95lbs at the moment :(. Will I stay my regular size or is it known to gain or loose weight?

- they say I'll eventually be able to swim and whatnot, but about how long through recovery were y'all able to swim comfortably?

-how hard is it to change/empty your bag?

-for all you FEMALES out there: and I going to need a whole new wardrobe? Will I still be able to war the same jeans (I'm not one who wears them skin tight but also not too baggy either)

Please help!! I am terrified and am looking for as much info As possible before hand.

Please add anythng else that I may have forgot as I'm sure there are a billion more questions that will pop up

Thank you tons
xOXo
26 year old Female
Diagnosed w/Crohn's Disease 1995 @ age 10
Flare ups & hospital says: Yearly
Prednisones the only drug my body hasn't rejected yet.
3 Seperate PICC lines - several mos each
Prev Meds: Remicade (anaphylactic shock), Cimzia, 6mp, pentasa, asacol, humira + many more. I've been told I have no other options than surgery, "all or nothing" they say.

rita5287
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 6/18/2011 10:25 PM (GMT -6)   
Hello I had my surgery 3weeks ago. I'm 26as well. Female. I had a bad experience after my surgery only because I over dosed on pain Meds n the hospital. But my surgery went really good. Was able to set up j pouch. I didn't sit up til 3rd day. N started off on clear liquids then full liquids then on 5th day reg food. Went home on 6th day. Can't really eat alot. I eat lil meals thru out the day. I've lost like 20lbs already. I had the lrg insicion done. Have a lot of pelvic pain still n hurts to get up n walk around but it's getting better.
The bag needs sum getting used to. N how to change it the rt way n making it fit so it don't leak. It's all trial n error!!!
I hope this helped sum. I'll keep u n my prayers. It is hard but worth it!!
God bless
Diagnosed w/UC 4-7-. Went from proctitis only in rectum to full pan colitis. No Meds have worked,Been hospitalized 3xs n 5 mnths. Have Gastritis also. Current Meds: pred 20mg 7days tapper to 5mg. Nexium 40mg. Xanax1mg.had proctocolectomy on 5/26/11. Went really well despite code blue! Healing now. Ostomy is gonna take sum getting used to! Nxt surgery n 3mnths!

LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/18/2011 11:42 PM (GMT -6)   
Hi Rita, thank you very much for the quick response, I really appreciate it. I won't be able for the j pouch but hoping for at least an ostomy with irrigation through the stoma so I won't have to wear a bag, but we'll see. 20lbs? That's scary in 3 weeks. Is that from eating smaller amounts or the days after surgery where u had nothing?? I hope your recovery continues to go well! I hope to hear more once a little more time passes. It's good to know I'm not out there alone, which is how it's felt for so long!

Thank
xOXo
26 year old Female
Diagnosed w/Crohn's Disease 1995 @ age 10
Flare ups & hospital says: Yearly
Prednisones the only drug my body hasn't rejected yet.
3 Seperate PICC lines - several mos each
Prev Meds: Remicade (anaphylactic shock), Cimzia, 6mp, pentasa, asacol, humira + many more. I've been told I have no other options than surgery, "all or nothing" they say.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 6/19/2011 12:36 AM (GMT -6)   
Hi LtlMissT

-how soon will I be able to sit up on my own? And the standup.
Then obviously comes walking somewhat comfortable.

Usually, they will get you up and walking either the same day or the next day after surgery. You won't want to, but the nurses can be pretty stubborn lol The more you walk, the quicker your recovery will be - it gets everything moving internally a lot quicker if you walk a lot :) You may walk like the Hunchback of Notre Dame for a couple of weeks, but that's normal :)

-I am a small female, 26, 5'flat and typically 105-110lbs although I'm only at 95lbs at the moment :(. Will I stay my regular size or is it known to gain or loose weight?

Most people initially lose weight whilst in hospital, but once you come home and start to heal and eat better, you'll go back to your usual weight (most of us struggle to not gain too much weight as we can now eat anything we want again).

- they say I'll eventually be able to swim and whatnot, but about how long through recovery were y'all able to swim comfortably?

I was in the pool swimming exactly 1 month after surgery - but I was 10 years old and kids tend to recover quicker from these things than adults.

-how hard is it to change/empty your bag?

I was doing it all by myself at 10 years of age - it's not hard, just a learning curve. You'll learn and soon enough it will become second nature to you.

-for all you FEMALES out there: and I going to need a whole new wardrobe? Will I still be able to war the same jeans (I'm not one who wears them skin tight but also not too baggy either)

At first, you'll probably just want to wear really baggy clothes until you heal so things don't rub on your incision. Once you've healed though, you should be able to wear all your old clothes. I used to wear the tightest jeans available as a teenager (just meant I had to empty a bit more frequently), but no need to buy a whole new wardrobe (unless you want to treat yourself :) )

Take care and good luck. We'll be here for you.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 6/19/2011 9:47 AM (GMT -6)   
Hi ltlmisst, I had surgery 2 1/2 weeks ago and it was done lapro so my experience may be attributed to that. So I was up and walking the next day after they took the catheter out also was put on clear liquids that day was eating food 2nd day post op, mind you everything that's mushy which you'll want to stick with for 6-8 weeks it's called low residue. Swimming is usually allowed after healing period 6-8 weeks doctor will ok. Because you are so young I believe your healing will be under way quickly the only thing that might slow it a little is the predisone but you will see strides of recovery every couple of days. I was just out of surgery worrying about my clothes but I can wear them and as time goes on they'll fit more comfortably. Did you get sited for your stoma and where will it sit on your abdomen? So as far as the emptying and changing the appliance, I was emptying in the hospital myself as soon as I was able to get up and did the first change in the hospital with the nurse. It is different for everyone so don't worry there is a huge learning curve with this and it takes time! ;-) I'm in the phase of trying different brands and types so as I've read and been told it takes a couple of months to figure all out. I keep up on reading on here and asking questions when I need help because the woman on here give great advice and support and I'm glad I can be apart of that! ;-) SO DON'T WORRY YOU ARE DEFINITELY NOT ALONE!!!!!!! ;-) you will be ok and I will say a prayer for you!!!! Keep us posted on here how everything goes!!
Dee
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
June 02 '11 the creation of Stella the stoma LOL! ;-)

Prov3:5,6

LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/19/2011 11:10 AM (GMT -6)   
Thank you so much for the replies. All these answers are putting me a little more at ease. As you all know, it's a scary change bu I know it will be worth it in the end! I appreciate you all taking the time to respond! I will keep you all posted once I go in on Monday =\
Still terrified but you are all helping me relax a little.
Thank you so much!!
26 year old Female
Diagnosed w/Crohn's Disease 1995 @ age 10
Flare ups & hospital says: Yearly
Prednisones the only drug my body hasn't rejected yet.
3 Seperate PICC lines - several mos each
Prev Meds: Remicade (anaphylactic shock), Cimzia, 6mp, pentasa, asacol, humira + many more. I've been told I have no other options than surgery, "all or nothing" they say.

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/19/2011 11:45 AM (GMT -6)   
LtlMiss T, You sound like your are ready and have a good attitiude.

All the advice that's been given is ditto from me. Get lots of rest at first and I ate lots of soups at first. I didn't loe wieght after surgerybut did get back to normal wieght because I was low before the surgery.

Tight stuff is hard because it touches stoma but that toughens up with time. Just keep everything and put things on to check and see how they feel. Only got rid of short t's and htey are out of style now anyway!

I swam within 3 months and it felt sooo wonderful. Now am back to triathlon racing and very happy. Won't say it's all easy but life is better this way than so sick.

Keep us updated, and walk, walk, walk to help the healing.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 6/19/2011 3:55 PM (GMT -6)   
I had open incisions with all of my surgeries and was walking after 2 days and home after 6 days at the most. I lost weight initially but soon put this back on as could eat so much more than before and no pain. Driving after 4 weeks and back to work after 5 weeks for most of surgeries.

Still wear my super skinny jeans and have no problems, just need to empty more often but straight after surgery cause of open incision then only wore baggy tracksuits bottoms or leggings or loose jeans as scar would be sore but was back in jeans after 2 months.

I changed my own bag from first day, it is a learning curve but sooner you do it yourself the better and try loads of different samples to find the one that suits you best.

Best wishes and am sure all will go smoothly.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 6/19/2011 8:34 PM (GMT -6)   
You've gotten good advice so far! I was 25 when i had my colostomy due to a perforated colon, no warning, just boom! you need surgery stat! I was in ICU for 3 days after surgery because of that, but once i left i was walking almost every 2 or 3 hours because the more you walk the faster you heal and the faster you can get out of the hospital, and believe me you will feel much better at home and heal faster than you would at the hospital. I couldn't sit up on my own after the first surgery for 5 days, but my second surgery i was healthy going into it and walked and sat up by myself same day. Don't push yourself too hard at first, just push a little. You don't want to try something you aren't ready for and bust a hernia. I had assistance walking after I got home with a walker for a few days and needed help getting out of bed and showering, but you want to test what you are capable of just do it when some one is around in case you fall over or something =P

Hopefully they sited your stoma so its going to be in a good place. You can wear anything though even if its not so awesomely located. Mine was right by my belly button and no one ever knew i had the bag and I didn't buy any new clothes (that I actually needed anyway lol.) I wore high waisted undies and camisoles to keep everything flat. 4 months later I even went to a formal new years party in a tight tight black dress and danced my butt off. No worries there!

I have no experience with swimming as mine was preformed last September and I got reversed last week. But as others have said, depending on how you feel, usually 4 weeks and you should be ok as long as everything is closed up.

It took me about 6 weeks to learn what worked for me as far as bags and finding out that kneeling in front of the toilet was the best way to empty and then swish it out with water. While you are in the hospital, if you can, go to edgepark.com and request a catalog. I found it to be the fastest way to browse for new things to try and I used them to get all my stuff. then go to all the main dealers websites, coloplast, hollister, etc and order samples or call them to do so. You'll find what you're most comfortable with. and what works for your skin, but it takes some time just cause there's so much out there to try! And remember, leaks happen! You'll have a WOC nurse, use them to the fullest!

You won't be able to eat anything for at least the same day as surgery, maybe the next as well, then they will wean you onto fluids and soft stuff. Sometimes they mess up and give you food right off the bat. DON'T accept it! Insist on going through a day of fluids first. Hopefully that won't be an issue you have to deal with though. (A friend's mom who had never been in the hospital, had rectal cancer and was given a hamburger same day as her surgery, didn't know any better, ate it, and got a hernia from vomiting and then had a 6 week hospital stay to fix it.)

initially you may lose weight, but like the others said, you'll regain once your eating and may gain too much cause you're going to feel so much better!

Just a suggestion, but you may want to request a PICC before surgery if you can, because you will probably be in the hospital for about a week and they will mostly likely take blood everyday and if you are like I was and anemic, your not gonna give up that blood. I had one before all my surgeries and will never ever go to the hospital knowing i'm staying for more than a day and not get a PICC. I love them. Also, take your own pillow with you, stuff to keep you busy and earplugs. They are a godsend to blocking out all those noises. If you have a computer you can take with you you can browse around the forum and get some questions pre-answered, and see others' stories. You are not alone! We're here for you and you'll be in my prayers! Good luck to you!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 6/19/2011 8:49 PM (GMT -6)   
You'll be ok, don't worry! I know it seems very overwhelming now but like Shaz said, it's a learning curve and then you'll be fine. I was 28 when I had my surgery and had some of the same concerns as you.
 
I had my surgery laproscopically and was able to get up the next day (with discomfort, of course, but the sooner you can manage to get up the better, as walking after surgery will help you recover faster).
 
I was able to swim within 3 or 4 weeks. I was mostly concerned about my butt wound from having my rectum removed.
 
I wear the same pants for the most part. Just had to get rid of a few pairs of shorts that were very low rise. You'll have to see where your stoma is placed in comparison to the waist of your pants. If they can make it slightly below that is ideal. If you can meet with a nurse ahead of time that is a good idea.
 
I was only 92 pounds the day of my surgery and now it has been a year and I've gained about 40 pounds. Crazy! This is the most I've weighed ever in my life, but I'm 5'6 so I'm still pretty skinny. Plus I was sick for a good long while, so I think this is more like the weight I'm going to be for a while.
 
Let us know if you have any other questions! You really will be fine!!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted Yesterday 3:17 PM (GMT -6)   
Good luck with your surgery. These are all really great questions. It is too bad your docs haven't given you better answers. Yes, everyone is different, but there are definitely some "norms".


-how soon will I be able to sit up on my own? And the standup.
I had a lot of pain, but I still tried to sit and walk right away. Sitting did hurt some, but not too bad considering that I had staples in my bum (I had my anus sewn shut as my ileo is permanent) and the first night I had to have the nurse help me roll over in bed. Ouch! That, really really hurt. I got sort of spacey though and sometimes forgot to push my pain med button on schedule. Remember to push the button if you have a pump:)

I walked the first night and about 4 times a day over my entire stay. It hurt, but wasn't unbearable. I did have trouble standing up straight because it hurt my incision. I know this wasn't good for my back, but I couldn't help it. Eventually when the pain subsided I was able to walk straight and tall.

I had some incision complications (which I have posted on in some recent threads) so my pain was a bit up and down over 4 months. This is not the norm however.

-I am a small female, 26, 5'flat and typically 105-110lbs although I'm only at 95lbs at the moment :(. Will I stay my regular size or is it known to gain or loose weight?

I went into surgery on the light side. I am 5'8 and normally weigh around 130lbs. I went into surgery at 119 lbs. and didn't lose any after the operation. I weighed myself this morning at around 7 months post-op and I am 121lbs. I am not worried about being a bit underweight though because I feel really healthy and strong. Things will stabilize eventually.

- they say I'll eventually be able to swim and whatnot, but about how long through recovery were y'all able to swim comfortably?
I swam at around 6 months, but again, I had incision healing woes and couldn't be submerged in water much before that. Now that I am swimming, I have absolutely no problems with my appliance sticking and can wear a tankini swimsuit without anyone knowing I have an ostomy. I am super active and do lots of outdoor sports. Once I hit 6 months post-op, I was able to get back to most of my activities (easing into them slowly of course). I will be able to do everything once I heal up a bit more. You can check out my blog to see the things I am up to post-op. There is link for it in my profile.

-how hard is it to change/empty your bag?
I think emptying the bag is pretty easy. I was doing it right away at the hospital once the nurse showed me how.
Changing is a little harder. It took me about 8 weeks to get it down and sometimes I still get frustrated because me stoma likes to output very unexpectedly which can make changing take longer. Still, it is pretty easy and a small price to pay for feeling utterly amazing again. It takes me around 30 minutes, but I am perhaps more meticulous than I need to be:)


-for all you FEMALES out there: and I going to need a whole new wardrobe? Will I still be able to war the same jeans (I'm not one who wears them skin tight but also not too baggy either)
I wear everything I did before and even have a pair of skinny jeans. My jeans are mid-low-rise also. Sometimes when I want to feel extra confident that my pouch isn't showing when I wear something tighter, I put on a pair of higher waisted undies that are designed for ostomates and hold my pouch really close to my body. Or I wear a wrap by the same company (Comfizz). Most of the time though I just wear my normal Victoria's Secret hiphugger undies. They rest below my pouch and I just let it hang over the top of them. I also wear a normal swimsuit (Nike Tankini) with an Ostomy Secrets swim wrap to conceal the top of the pouch since the swim bottoms are extra low-rise.

That said, it did take a while to get there. Until my incision was healed, I wore looser bottoms.

Stoma placement is key. Do not forget to bring your favorite jeans with you and put them on when you get your stoma marked. I imagine that when you are in the ER, you will be in a hospital gown, but insist that you put on your regular pants for this meeting!!! Insist!!! It is the most important thing you can do if you want your clothing to work with your stoma.

Please help!! I am terrified and am looking for as much info As possible before hand.
It is natural to be terrified. Let yourself feel the fear and grief while looking forward to a healthy future. I can't even put into words how much better I feel after this surgery. It is unbelievable and beyond all my expectations. Even with slow healing and complications, I am so, so, so glad I had this surgery.

My biggest advice is to live in the moment while you are healing and try not to worry too much about the future. Even with complications, with the help of your doctors and nurses, things work out in time. Be patient. There will be lots of opportunities to figure things out, find the right appliance etc. No need to stress yourself out trying to figure it all out at once.

Keep asking questions and good luck!
Please add anythng else that I may have forgot as I'm sure there are a billion more questions that will pop up
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Yesterday 6:55 PM (GMT -6)   
well everyone already answered everything!
But i'm going to add that when you wake up you will have a clear bag, and your output will probably be this swamp green stuff that smells worse than death! BUT don't freak it will change after you eat a little, and you can wear a different bag at home, that isn't see through!
Just remember that life will be better after surgery! Good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted Today 2:24 AM (GMT -6)   
Thank you everyone!! All of your answers are helping more than anyone else can!

Blueheron- there aren't enough words to thank you for your response and link to your blog. I am (was) a very active and outdoors person. Not really backcountry and hiking but riding horses, snowboarding, wakeboarding, softball and much more is what my life consists of and what I plan and will push for to continue. So reading your blog has helpled me a lot thinking into my future. I actually work at a ski resort and was very scared of how that might go with my situation but after seeing the video and reading about your trips, im not too worried now!! I have a few more questions for you. You said the placement of stoma is key. I have heard that a lot but no one really says where. All of my jeans rest about the same place. Considered low rise but because I'm so short they rest a little below my belly button. Where do you recommend the stoma actually be placed? Higher up or low (like an inch or so higher than where the pants rest)?

Thank you so Much in advance!!
26 year old Female
Diagnosed w/Crohn's Disease 1995 @ age 10
Flare ups & hospital says: Yearly
Prednisones the only drug my body hasn't rejected yet.
3 Seperate PICC lines - several mos each
Prev Meds: Remicade (anaphylactic shock), Cimzia, 6mp, pentasa, asacol, humira + many more. I've been told I have no other options than surgery, "all or nothing" they say.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted Today 2:25 AM (GMT -6)   
Everyone has already answered your questions, so I just wanted to let you know that I'm thinking of you and wishing you all the best with your surgery. Yeah, it's going to hurt at first, but the pain medicine takes care of that, and the surgery pain is temporary. It takes about 6 weeks to fully heal up, but once you are, get ready to experience a whole new, healthy life! It's so incredible to have energy and not be sick anymore. I'm so excited for you!!! :-)

Cece
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted Today 6:42 AM (GMT -6)   
You will be just fine! Everyone here is so supportive and wonderful. I couldn't have made it without such wonderful advice I received here.

I had a rough month or so, I had a colectomy, ileostomy, hysterectomy, and a diagnosis of ovarian cancer, stage 3C. Wasn't prepared for the last two...when they started my surgery, 30 minutes into it they came out and told my family. All that said, I feel SO much better than I have felt in years. I am going to beat cancer, and enjoy my life for a long time! I LOVE having a bag and being able to control when i go to the bathroom! I have a new life...and you will too!!

Mollie

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted Today 7:00 AM (GMT -6)   
LltMissT-

I am glad my site helped. I know has scary it is. From my bed in the hospital when first facing the possibility of surgery, I searched out every outdoors person on the internet with an ostomy that I could find and emailed them. It felt strange to be emailing strangers with my medical woes, but they all helped me so much.

My stoma is 2 inches to the right of my belly button and then 2 inches down. The top edge of my stoma is in line with the most bony part of my hip bone. I had no idea where my stoma would be. I wore my favorite jeans (and brought my climbing harness and backpack which had waistbands I also wanted to work with my stoma) with me to my meeting with the stoma nurse and she figured out a good spot. You don't want the stoma to be right under a tight waistband or above it. If the stoma is above your waistband, the waistband will cut off the pouch mid-way so that output can't slide to the bottom. This can cause blowouts. Overall, you want your stoma to be below your waistband/beltline.

With my usual mid-to-low rise pants, the bottom edge of my waistband falls right at the top edge of my stoma. So the pants do overlap the pouch, but just at the very top. Once in a while, the waistband of my pants sinks down so that it is right over my stoma. However, I am thin so when this happens, my jeans are actually more resting on my hipbones than my stoma. Even when my waistband ends up positioning over my stoma, because of the hip thing it is not tight or cinched over my stoma. Nothing is constricted and things flow just fine. Hard to describe in writing. Hope it makes sense. Everyone is built so differently, which is why it is hard to say exactly. That is why that meeting with the stoma nurse is so crucial!

Also, I am not sure if you are getting a reversal or not, as stomas can be a bit different with the different types of surgery (can be loop or end). I am not clear on the difference, but someone else on here could chime in. My ileostomy is permanent so I have an end ileostomy. One of the key things a GI nurse told me was not to get a stoma that is too short or flush with the skin. Flush stomas can pump stool under the wafer. I had forgotten to ask my surgeon about this at the consult, so right before I was wheeled back to the operating room, I asked him to please make sure my stoma was long enough. He laughed and said not to worry and that he made them all a good length. My stoma ended up being great! It roughly 1.25 inches tall and points toward the bottom of my pouch. Because of this, I have only had one leak in seven months (which was more due to incision drainage a couple of days after surgery getting under my wafer).

Best wishes and let me know if you have any more questions.

-Heidi
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 6/21/2011 7:04:33 AM (GMT-6)


LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted Today 7:24 AM (GMT -6)   
Thank you again everyone!

Yes Heidi, the explanation of the stoma and hip bone makes perfect sense since I a fairly thin as well (too thin for what I'm use to right now. Hoping that changes a little once the healing begins :)

My surgery will be permanent as well, no chance for reversal. At this point that is ok because I am so sick and tired of being so sick and tired all of the time. Finally ready to actually enjoy the rest of my twenties and beyond without the daily fight!!!

I'm sure there are so many more questions that I will come up with but between you and everyone else, I am feeling more and more at ease going into this along with recovery and a positive life after healing!

Thank y'all so much. It means so much to me!!

xOXo,

Tracy B.
26 year old Female
Diagnosed w/Crohn's Disease 1995 @ age 10
Flare ups & hospital says: Yearly
Prednisones the only drug my body hasn't rejected yet.
3 Seperate PICC lines - several mos each
Prev Meds: Remicade (anaphylactic shock), Cimzia, 6mp, pentasa, asacol, humira + many more. I've been told I have no other options than surgery, "all or nothing" they say.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Today 8:01 AM (GMT -6)   
thats about where mine is too, but its different for everyone, so it might not be the same for you.
If you can, have them put a bag on you, and wear it around a bit, see if its in a good spot.  you could fill it about a thrid full with applesauce to give you an idea of where it is and if it's good there.
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