ileostomy/pouch

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lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/7/2008 11:30 AM (GMT -7)   
hi,every1 i'm new to this site. reading thru the messages and question i was happy to read that other people r going through the same thing. i sometimes feel i'm exagurating my symptoms. i was diagnozed with UC in june 2001. things have not improved even with takind the meds. it shows i have UC in the whole of my colon,so the doc has recommended to have an ileostomy.i was due my opp on 3/01/2008 but was cancelled cos had no beds availble. i'm waiting anyday for my opp,am really scared but i will have to go thru the opp soon anyway so i decided to have a planned opp rather than an emergency. i bleed so much and take strong painkillers,very tired all the time very anemic.i've also got underactive thyroid. i have three young children and can,t put them thru this anymore. i don't have any energy to do anything,just taking my daughter to school is a mission can't even cook cos i be so tired.
sorry to bore u with this but i feel i can tell everyone how i feel cos u'll understand.
is there anyone who's had this opp please let me know i'll really appreciate it.
 
30 year old mum to 3 children.xxxxxxxxxxxx

redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 1/7/2008 11:46 AM (GMT -7)   

Hi there,

I just had an emergency ileostomy over the holidays - it hasn't been easy and it is sometimes tough adapting to life with an ostomy bag, but I keep reminding myself that at least I'm recovering now and on my way to good health and not struggling to work through my UC anymore or waiting for the next flare to hit.  I was also at a point where I was sick all the time and it was getting really hard to take care of my 17 month old daughter because I was so tired and in so much pain all the time.  It is great that only a couple of weeks post-surgery my UC pain is gone and the only meds I'm on are the prednisone I'm trying to taper off of still that I was on before the surgery.  I have a lot of support from family and my husband and help with the baby, but recovery is going pretty well and I'm up and able to do lots of stuff now.  I will need time off work and help again when I have the second surgery to have the jpouch (hopefully) created.

Check out the jpouch.org website and the ostomy board here on Healingwell.  Do some reading before you make your decision.  For me, even though it ended up being emergency surgery, I knew it was coming and I am really glad I've had it done.  Hopefully I've been through the toughest part!

Good luck to you,

 


RedHeadedMama
32-yr old female, diagnosed with left-sided UC in 2004, likely pancolitis, maybe Crohn's
1st severe flare started post-pregnancy in December 2006 and never stopped
Was steroid dependent, tried Remicade, didn't work
Sub-total colectomy December 24, 2007
Recovering and waiting for j-pouch surgery . . .


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/7/2008 12:19 PM (GMT -7)   
I had elective j-pouch surgery 7 years ago. I have never regretted my decision. Recovery is long but at least you will immediately feel healthy.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/7/2008 12:37 PM (GMT -7)   
thanku so much for ur reply.
firstly i want to say good luck with ur recovery, i also started or with left sided UC but a camera in october confirmed that all my colon had colitis,no wonder i was bleeding all the time, with painkillers i go to bathroom at least ten times and without them mybe upto 20. seeing blood in the toilet seems normal ,i also have lots of clotting. i'm so tired all the time.doctors recommend surgery when my colon was 10 inches effected then i thought am i doing the right thing but now that it's totaly effected i think i'm more prepared.
1; i'm young so i can have the pouch
2;if left it can turn to cancer
3; i have no quality of life
i ly down all day doing nothing, the slightest work i do gives me aches and pains.
my kids are also suffering.
my sister had the same surgery 14 years ago and she says she should have got it done sooner.she's got a much beeter life now.the only thing that worried me was if the pouch went wrong i would be left with the bag forever,but like someone said on this site the colon has given nothing but pain so why keep it?
so i'm ready to have the bag than the diseased colon.
when did u have ur opp and how long did u stay in hospital.here in england we have a choice of painrelief thru a drip or an epidural.i want to avoid the epidural,wat did u thave.
take care of ur self and let me know how ur doing.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/7/2008 1:00 PM (GMT -7)   
I was in the hospital for 7 days and back to work 3 weeks later. I opted for the standard morphine drip, the thought of an epidural scared me more than the surgery!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4811
   Posted 1/7/2008 2:24 PM (GMT -7)   
The surgeon that I am planning on using said that he could do a 1-step J-pouch on me and ontop of that he could do it Laproscopically. It would require me to be in the hospital for 10 days and I would be fully recovered in 2-3 months. He said that the pouch would be 100% of what I should expect after 12 months

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/7/2008 6:43 PM (GMT -7)   
Keith - where are you having your surgery done?

RedHeadedMama - if you don't mind me asking, why did you have emergency surgery as opposed to scheduled surgery? I have heard of emergency surgery before but never known why/when it is required.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 1/7/2008 7:14 PM (GMT -7)   
It was emergency surgery because my body wasn't taking anything in and I was loosing weight so rapidly  - they were also worried my colon would perforate it was so diseased.  I'm very glad I had it done before perforation!
 
RedHeadedMama
32-yr old female, diagnosed with left-sided UC in 2004, likely pancolitis, maybe Crohn's
1st severe flare started post-pregnancy in December 2006 and never stopped
Was steroid dependent, tried Remicade, didn't work
Sub-total colectomy December 24, 2007
Recovering and waiting for j-pouch surgery . . .


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/7/2008 7:16 PM (GMT -7)   
wow. thanks for telling me. I am glad you had it before the perforation also... :)
good luck recooperating. sounds like it is going well.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/7/2008 9:34 PM (GMT -7)   
i had my surgery in April, i had elective surgery for a perm ileo, i was in the hospital for six days, and i was pretty much useless for the first two weeks, but after that it wasn't bad. I was back to normal, actually much better by the end of May, I started walking and doing all kinds of stuff, i walked two miles today. I go shopping and all kinds of great stuff now, and I eat all the time, lol.
I think you will be much happier. I chose the perm ileo because i didn't want to have the recovery time after the j-pouch, where your body gets used to it, and i didn't want the worries that it might fail, but that doesn't happen to everyone, and most people are really happy with the j-pouch, and the good thing about that surgery is, if it doesn't work, you can go back to the bag, which you will have temporarily, and it really won't be bad, i promise!
Good luck!

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/8/2008 5:38 AM (GMT -7)   
thanx for all your tips, really.
i was also wondering do you all ways have to worry about what to eat and the fact that some food give you blokages.
i am a bit concerned about that.
another set back of my opperation being delayed is that i have booked a holiday with the kids aboard in the easter holidays,(call me silly ) thinking i'll recover in ten weeks but now that my date is on hold untill i get a bed i was wondering how long it took you to recover.
tanx again. samiexxx

P.S i love this site.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4811
   Posted 1/8/2008 2:17 PM (GMT -7)   
UCinNC said...
Keith - where are you having your surgery done?

RedHeadedMama - if you don't mind me asking, why did you have emergency surgery as opposed to scheduled surgery? I have heard of emergency surgery before but never known why/when it is required.

Mount Sinai in NYC....there are a few surgeons there that will do 1-step laproscopic J-pouchs @ Mount Sinai.  They prefer to do 1-steps because the patient only has to go under once.
 
One of the requirements is that you haven't been on Prednisone recently, otherwise you need to go for 2 steps.  I haven't been on Prednisone in a couple of years.
 
--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/8/2008 2:33 PM (GMT -7)   
Hi Keith - I have another question for you, if you don't mind. It sounds like you've elected for surgery, as opposed to having to do it... am I correct on this or is Cyclosporine not a long term option? If your decision is by choice, can you tell me a bit about why you're doing it, please (if you don't mind)? are you sick of the meds? I ask because part of me is interested in surgery, and am wondering how people make the decision. thanks.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 1/8/2008 3:10 PM (GMT -7)   
HI lIPGLOSS AND WELCOME TO hEalingwell. You've found a great site here with many good people.I hope your surgery goes well. Its a pity that its got so bad that you have to go though with the surgery.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


headphones
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 1/8/2008 4:43 PM (GMT -7)   
lipgloss~ i have a situation similar to redheaded mama's. i was hospitalized 4 times over the last couple months trying to get a flare under control (had pancolitis) and i ended up having emergency ileostomy surgery right before thanksgiving. unfortunately i did perforate, which was unbearably painful. besides all of this i was in my 2nd trimester of pregnancy. the baby and i are fine now, but i've had a little bit rougher recovery than most, which the docs contribute to being pregnant. i can't seem to keep my potassium levels up and kept getting dehydrated which made me not be able to keep down any food because i would get nausous. it's almost 2 months out now and i'm at home and starting to feel more normal. the good thing is the UC pain was gone immediately. of course there's the pain from the surgery to contend with but painkillers help. i had to get off ASAP because it's not the best for baby of course, but i definately needed them at first. my incision wound has healed slower than most because of my growing belly. it was left open as opposed to being stapled/sutured close because the surgeon was worried about infection. i'm having a little bit of a hard time dealing with the bag because i really didn't have any time to mentally prepare for all of this. i am hoping to get the j-pouch surgery some time in the near future but i think the doctors agree i should wait until we're done having kids so we'll have to decide on that.
i'm eating everything other than real fibrous things like raw veggies, etc and haven't had any problems so far. oh, i've tried asacol and all the other 'first resort' meds, then rowasa enemas and prednisone, nothing put a dent in my uc, i just kept getting worse. hopefully this is helpful in some way and good luck with your decision.
headphones
29 yr. old female
diagnosed with pancolitis uc 7/05
emergency ileostomy 11/07

vitamins, TPN
pregnant~ due in march


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4811
   Posted 1/8/2008 8:06 PM (GMT -7)   
UCinNC said...
Hi Keith - I have another question for you, if you don't mind. It sounds like you've elected for surgery, as opposed to having to do it... am I correct on this or is Cyclosporine not a long term option? If your decision is by choice, can you tell me a bit about why you're doing it, please (if you don't mind)? are you sick of the meds? I ask because part of me is interested in surgery, and am wondering how people make the decision. thanks.

I don't mind answering your questions.... yes it will probably be elective surgery for a couple of reasons.  I've dealt with UC for 3 years and I am just sick of it and want to move on with my life without the meds and uncertainty.  I've had two long hospital stays during that time and it's just been enough!!!!   I have severe UC and I do not respond to steroids (never did) and 5ASAs just make me worse.  The other reason is that my chance of colon cancer is higher than most others with UC; I have Pancolitis and both of my grandfathers had Colon Cancer.  So it doesn't make sense to me fight this disease my whole life to maybe have my colon removed for cancer (I guess I'm a glass empty type of guy when it comes to UC).   
 
Right now I just need to figure out how I am going to get my insurance company to pay for this surgery.... basically none of the surgeons @ Mount Sinai take insurance.  Which is typical of most NYC doctors.  I will add more insurance or switch insurance companies if necessary.
 
Cyclosporine is very fast acting....they usually use it in the most severe UC flares.  It is used either to save the colon or to get the patient healthy enough for surgery.  I was at approximately 30 bms a day, somedays less, other days more.  After about 10 days on IV Cyclosporine I was down to about 5 bms a day.  Cyclosporine usually requires a hospital stay.  My GI calls it the Atom-bomb of UC treatments.  It is more effective than remicade but it requires a hospital stay.  http://www.ccfa.org/info/treatment/immunomodulators
 
--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/8/2008 8:38 PM (GMT -7)   
Hi keith - thanks for the reply. you know, I have only had UC a year (roughly) but I actually feel quite similar to you in the sense that I am already high risk for cancer due to hereditary issues, and this disease and the drug regime just make me unhappy. so, i appreciate hearing your thoughts. I told myself I'll give it another year, not do anything too quickly, but that if I still feel lousy at the end of 2008, then I may just need to part ways with my colon. I just feel like adjusting to no colon would be eaiser for me than UC, personally.

sorry to hear that NYC doctors don't take insurance. I have never heard of such a thing. do you have relatives near any other place where you would feel comfortable having surgery? if so, perhaps you could get the surgery at another hospital? I ask only because surgeons at both Duke and UNC do take insurance (I live by those 2 hospitals), so I would think that either a) other universitiy hopsitals, like columbia, might take it, or b) this issue is unqiue to NYC (I guess everything else is so expensive in the city, why should surgery be any different, huh? just a thought, not that you asked...

you sound very calm about your decision to have surgery. that's probably a very clear sign that it is the right decision for you. when is it scheduled for?
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4811
   Posted 1/8/2008 9:14 PM (GMT -7)   
UCinNC,

I've done my research on the surgeon that I want to use and made my decision....he is highly recommend and I like him too; he has a good bedside manner which is very important to me. He has a very good success rate with the surgery....he was giving me the stats and they were much better than I have heard elsewhere for the j-pouch surgery. about 1% for pouch failure and 1% for reproductive issues.

You really only get one shot at surgery so finding the best surgeon possible is critical. I will probably have to pay 20%-30% off the cost of the surgeon, insurance might pick up the rest. The hospital stay would be covered by my insurance but the surgeon's fees may only be partially covered because he doesn't accept insurance. Plus there are not too many surgeons out there right now who will do a 1-step J-pouch Laproscopically.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/9/2008 2:24 AM (GMT -7)   
tanx Marty and Headphones.
Headphones i really do pray u get better and have a healthy baby. I'm so sorry you had to go through all that during your pregancy. But look on the bright side it will make your life alot better,i don't know wether this is your first child or not but the last thing you want to have is UC and a baby. It's so much harder. Especcailly as they grow up. Some times when i go out with my 4 yaer old, (which is not that often),and i need to go to the bathroom and i quickly get in the car and drive while breathing very heavily trying not to have an accident, she says go mummy go or she tells my other children to be quiet cos mummy has a bad tummy ache. She has a big list of things she wants us to do when i get better. It makes me very sad that they have to go through this. I wish i get better for them.( sorry to bore you all) but it's so fantastic to talk to people in the same boat. take care xxx

Hi Keith, tanx for the mail.
i'm sorry to hear you have to pay for your sugery, but you know what it will be well worth it.
Also i think your very brave to have a one stage opperation, when my doc first suggested i had a three stage opperation i was scared, then when we decided to go ahead with surgery he said that i was young and fit enough to go with the two stage opp. i was so scared that they were going to form the pouch and give me a bag at the swame time. But honestly this site has helped me so much.
The only problem is that i have to wait a day for your replies cos here in england it's 9;18 am while where ever you all are it's night and you must be sleeping.
But hey i'll never complain!!!!

Also tanx to everyone else who replies, i do apprecciate it.

samie xxxx

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/9/2008 2:39 PM (GMT -7)   
hey Keith - your surgeon sounds great. I am glad you have somoene you are pleased with. I didn't mean to imply you should search unless the financial burden was too great. but sounds like you're in great shape. but I just thought of it because I was actually at an appointment yesterday with a high-risk OBGYN, and I mentioned to her my interest maybe in surgery at some point and she mentioned that UNC does it laproscopically, which is why I thought of it.

anyway, sounds like our philosophies are very similar. I am kind-of jealous of you for being able to know what you want with such certainty. I am not there yet, for sure. but, I guess there is no rush. anyway, thanks so much for sharing your thoughts. I appreciate it.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4811
   Posted 1/9/2008 3:15 PM (GMT -7)   
Part of my thinking is that it is only a Colon.... you don't need a colon to live and if you aren't living a Happy and Productive life because of your colon (UC) then you need to take it out of your body.

I really don't understand why GIs try so hard to "save the colon"..... for me it is not worth it. I am done with it and I am not waiting around for another cure. Even if they found a pharmaceutical cure today it would probably take at least 6 years before the FDA approved it.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/9/2008 4:15 PM (GMT -7)   
keith, that is what i think, i don't know why doctors are so adamant about that either. Or people for that matter, even though i was for a while.
but anyway, you can eat whatever you want, just be sure you chew! My dr told me it would be fine just not to eat a whole cabbage at one time, who would do that anyway? I stay clear of seeds and nuts, because seeds cannot be digested, and nuts are hard to digest, but you can eat them, just be careful with then. I eat salad and fruits and meats and pizza, everything. You may notice that some foods cause more gas, you will learn what you can eat without getting alot of gas

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/10/2008 9:18 AM (GMT -7)   
hi summerstorm, just wanted to know what surgery you had and how long did it take you to recover?
That's if you had surgery.
Anyway got a date for my surgery to get rid of my colon. They've booked me in for the 24th of january, hope everything goes well.

samie xxx

lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 1/10/2008 10:40 AM (GMT -7)   
so sorry summerstorm.
i already know the answer to that i guess i forgot who u were.
sorry once again.
anyway how are u doing after your surgery are you feeling alot better?
and has the surgery helped and what are you up to?

take care.

samie xxx

elishasummers
Regular Member


Date Joined Jan 2008
Total Posts : 29
   Posted 1/10/2008 2:35 PM (GMT -7)   
hey everyone i am a new member and i have joined bcoz of my sister she also has uc u all may know her, i wuld like to say that you all are and have been so brave i don't know how i would have coped with this. seeing my sister go through it is hard enough bcoz her pain is something i can't help with, by joining this site she seems so much happier thanks to you all her opp is on the 24th jan truthfully i'm so scared 4 her i just hope all goes well she is really brave and has coped soo well. if anyone can tell me, how to help her after the opp and how she would feel so that i would now what to expect. thankyou yet again confused
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