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kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 6:57 PM (GMT -6)   
Hi everyone, i was diagnosed with ulceritive colitis almost 5 years ago (i am 15 btw) and i have honestly run out of options. My doctor has said ive tried every medication they have out there. Has anyone done the surgery or have any information about it that they could share with me please?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/7/2008 7:53 PM (GMT -6)   

I had surgery for refractive UC 7 years ago.  Life for me is much better sans colon and hopefully it will be for you too.  You have several surgical options and I encourage you to learn more about them so you can make an informed decision.  I had jpouch surgery which basically leaves functionality the same as with a colon.  There are other choices though.  You might want to start at www.jpouch.org  That site has threads for the jpouch; kpouch; and permanent ostomy.  Good luck!

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


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 7:55 PM (GMT -6)   
how has it changed you if you dont mind me asking?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/7/2008 8:16 PM (GMT -6)   
Surgery has given me freedom from taking medications, freedom from knowing where every toilet in town is; freedom to exercise and travel at will.  Also there is no more urgency, accidents, discomfort, and embarrassment.  It comes with trade-offs; increased frequency and a tough first year of adaption.  I have never regretted my decision. 
 
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


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 8:20 PM (GMT -6)   
how long did it take for you to recover??

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/7/2008 8:33 PM (GMT -6)   

I went back to work 3 weeksafter surgery but it took about one full year for the pouch to fully adapt.  That wasn't a year of lounging.  I went camping 6 weeks post surgery; traveled through Europe 3 months post surgery; and did a half marathon 6 months post surgery.  But still the fatigue left over from 2 years of chronic illness, from being anemic, and surgery itself took its toll.  Typically it takes about a year for everything to fall into place.

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


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 9/7/2008 8:51 PM (GMT -6)   
I've had my ileostomy for 32 years due to UC (I had it done when I was 10 years old). Like Suebear said, life is so much better afterwards. No more pills, no more pain, no more running to the loo and hoping I make it on time, I can eat anything I want (and it shows!). I've travelled the world, ridden elephants and camels, been rock climbing, swim regularly every summer, life is great!
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/8/2008 3:25 AM (GMT -6)   
i saw a colorectal surgeon today in preparation for surgery.
 
He said the same thing that Suebear said in that it takes about 12 months to recover/retrain whats left of your bowels to be able to stretch to hold enough fecal matter to last 5-6 BMs a day, but judging what he said about normal recovery times (in hospital 7-14 days, back to work 6-8 weeks) I think Suebear is a rather special exception!
 
One of the interesting points he made was that the first stage of the j-pouch operation leaves you with an ileostomy. This gives you a change to find out what it is like having a bag. Apparently some patients opt to keep it, some complete the operation and some decide to go back to the ileostomy because they feel it offers a better quality of life over the j-pouch.
 
I'll probably end up having a 2 stage operation as i am healthy enough so that i won't need 3 but as i haven't had any previous colorectal surgery, i can't have it in 1 (If i got that bit wrong i apologise). The second stage is fairly minor but will normally be done 3 or so months after the first part (3-5 days in hospital, back to work 2-4 weeks).
 
The first thing he said was that the op makes BMs more predictable!! and as well you are no longer sick!
 
turn  
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/8/2008 7:13 AM (GMT -6)   
You might go to the ostomy board and give a shout out for Bennie. Her daughter, Bratcat, is close to your age and just had the first stage surgery. Bennie is around a lot, and Bratcat posts on occasion.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/8/2008 9:50 AM (GMT -6)   
I talked to a colorectal surgeon in July. He told me that he rarely does one-step, and since I've spent nights in the hospital before, I would at least need 2 steps. He said that it takes about a year for the pouch to adapt, and the number of BM's after that is 3-10 w/ an average of 6. Surgeries can be done laparoscopically (which is less invasive than open surgery), and it should lessen hospital stay by a couple days and leave smaller scars. There is about 95% success rate for jpouch.

jpouch.org is a good resource, but don't let it scare you--the people who post there are the ones in minority that need help; there are plenty of success stories. Also check out ucstory.wordpress.com.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 10:31 AM (GMT -6)   
I guess what throws me off about the surgery, is people keep talking about 4-6 times a day STILL, but that it's ok and so much better..

And what I don't understand is that I have 4-6 on a REALLY GOOD DAY anyway, and I hate it equally. Can someone present some pros / cons, or equate / explain the way BMs are so vastly different post-op that this would be considered 'better'?

I wish to god that I could just go back to my old world of once a day, or once every two days. People take pooping for granted man, I swear to god they do.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/8/2008 11:15 AM (GMT -6)   
Isn't 4-6 times a day normal? I could be wrong, but it sounds normal...can someone help me out on this?

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 11:36 AM (GMT -6)   
No, and I am curious if you are being facetious. Regular BM frequency for humans is between 3 times per day to 3 times per week, formed. Before this hellacious disease I was a 1 a day to 3 a week person, depending on diet, etc.

Normal, as I would call it, is whatever you were before you got the disease. Remission, as I see it, is a return to THAT normalcy.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/8/2008 11:48 AM (GMT -6)   
It's better because:

a. no urgency or pain
b. no prolonged periods on the toilet. Emptying a jpouch is as quick as urinating.

So although frequency is higher it's easier and faster to empty.

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


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/8/2008 2:30 PM (GMT -6)   
Lucky777,
 
I really wasn't sure...but it does vary from person to person; so 4-6 maybe normal for some but not all and visa-versa.

NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 9/8/2008 5:34 PM (GMT -6)   

Thanks Judilyn for the vote of confidence wink

Hi kazzaz! My daughter (Bratcat) is now 17. She got sick in September 2006 and was diagnosed in October 2006. She went through all the usual meds (asacol, rowasa, cortenemas, 6-mp, remicade, prednisone). They would work for a bit but she would flare again. She never had small flares. Only 3 big flares in 1-1/2 years. She was out of school for 2 months at a time.

She was in remission when she had surgery which is healthier but hard because she was feeling well. We decided it would be best for her to have surgery at the beginning of the summer so she could have the whole summer to recuperate and adjust to her new, improved body.

Bratcat had step 1 (of 2) surgery on July 3. The surgeon removed her colon, created a j-pouch with her small intestine, and created a temporary ileostomy. She had a full incision (although many surgeons will do it laparoscopically). Her doctor prefers to do it that way. She was in the hospital for 6 days. She had an epidural to relieve the pain for a few days. For her, the first few weeks were tough. Her incision hurt (until the staples were removed). She really didn't have alot of other pain. She did take a pain pill at night once in awhile to help her relax enough to sleep.

She has adjusted pretty well to her temporary ostomy. She has had a few leaks. It is trial and error to find what works best and for how long. She has no problem emptying her bag. She is fairly comfortable around people. She prefers wearing looser shirts so she can let her bag hang down. Luckily, baby doll shirts are hot right now!

Bratcat went out with me during the summer when I ran errands. At first she got tired easily. She decided (on her own) to use the motorized wheelchair carts they have in the stores. It never embarrassed her and it gave her freedom to join me. She went back to work (she works part-time at the library) about 6 weeks after her surgery. She probably could have gone back sooner but, hey, it's the summer! She hangs out with her friends. If anyone asks, she will usually tell them what she has gone through. She has had no problems (knock wood). She gets a bit lightheaded if it gets too hot out and she doesn't drink enough (and she drinks alot!). Small aches and pains but nothing that tylenol won't help. Her biggest problem this summer was lack of energy and strength and having to build it back up.

She started her senior year last week. She is doing well. A little more tired than before but her days are much longer. Each day gets better. And she tries to get more sleep.

She is scheduled for her last surgery on November 10. The surgeon will "push" her temporary ileostomy back in and reconnect to her new j-pouch. She should be in the hospital 3-5 days. The doctor says she should be able to be back to school within 2 weeks. We worked it out so she probably won't return to school until after Thanksgiving. It gives her a bit more recuperation time. Bratcat is very excited about her upcoming surgery (who would have thought you could be so happy to have surgery). We expect her to have many BMs in the beginning. She knows it may not be easy. But we have been looking at the whole surgery process as a yearlong thing. She will continue to get better. She will hopefully feel great by next year (they say it can take a year for the small intestine to adjust to its new job).

Bratcat knew exactly what the surgeries entailed but she never looked at a picture/photo of any of it prior to her surgery. I did. The best thing about surgery so far is no meds. She only takes a multivitamin. She no longer has to take prednisone. This last flare in the spring caused her to gain 40 lbs. She has lost it all (she isn't trying). She eats well. It is exciting to know that she won't have to worry about flares ever again. She isn't too concerned about the number of times she will have to go to the bathroom. She figures she goes to the bathroom to urinate many times during the day, so what if she will have to poop also. There won't be urgency or pain.

I hope some of this helps. Feel free to ask more questions. I am sure Bratcat will chime in. If you want to talk to her (or me), just holler. We also go on the ostomies thread on this forum and on j-pouch.org. We (I) asked lots of questions (big and little ones). Everyone has been very supportive.  


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 6:20 PM (GMT -6)   
Bennie, thanks for the run-through. That was very informative. I am glad she is doing well.

NBT - I can't see 4-6 times a day being "normal" for anyone. But perhaps. 3 times a day to 3 times a week that is common frequency doesn't lend itself to 4-6 times a day.. if it is that much, there is probably something wrong (like UC, etc).

But perhaps.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/8/2008 7:06 PM (GMT -6)   
Lucky777,

you might be right about something being wrong...there are some people at work who use the bathroom as often as I do...so maybe they have UC, IBS or Chrons...or maybe they have a j-pouch or a bag that needs to be emptied. It is very possible indeed. I think sometimes we underestimate just how many people suffer with conditions like ours...last I heard there were 700,000 UC sufferers in the USA alone with numbers increasing annually, so you maybe right about that.

Still, everyone is different and we should allow exceptions for those cases...bearing in mind that bm's and frequency have a lot to do with diet as well.

NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 7:09 PM (GMT -6)   
True statement.

And even 700,000 is a huge number, considering 330,000,000 in the US. I would bet that the number is higher counting those misdiagnosed/undiagnosed/acute cases.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/8/2008 8:53 PM (GMT -6)   
ok well, i have a permanent ileo, i didnt' opt for j-pouch, i just didn't want to go that route.
Life is great now!  i am right this minute at the beach, the first beach trip i have taken in years without being sick, well i went last year but only a few months after surgery so i was still a little tired!  This year i have plenty of energy and am going to the water park and the ocean tomorrow!  woo hoo! 
Noone will notice if you don't tell them, the bag doesnt' smell or look funny or anything.  You can wear whatever and do whatever. 
It's freedom!  finally!

kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/8/2008 9:05 PM (GMT -6)   
how would they see the pouch..? isnt it inside your body?

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 9/8/2008 9:23 PM (GMT -6)   
Lucky777 said...
I guess what throws me off about the surgery, is people keep talking about 4-6 times a day STILL, but that it's ok and so much better
Basically, you'll never be back to what a bowel intact person considers 'normal'. However, I empty my bag whenever I pee (ie 4 - 6 times a day). There is no pain, no cramps, no urgency and it only takes me 2 minutes and I've emptied and am out of there. Heaps better than the hours I spent in the loo with UC in pain.
 
2 minutes x 6 times a day = 12 minutes a day spent in the loo. I would spend more than that time in one sitting when I had UC, this way is heaps better :)

Kazzaz said...
how would they see the pouch..? isnt it inside your body?
A J pouch is inside your body, but Summerstorm and I have an ileostomy which is outside :)  No one knows we have an ileostomy unless we tell them as it's not able to be seen from under your clothes (unless someone has x-ray vision).

I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

Post Edited (Shaz032) : 9/8/2008 9:26:19 PM (GMT-6)


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/8/2008 10:02 PM (GMT -6)   
Ohh.. im not gonna be getting a ileostomy then if i even have the surgery, im going to see the surgeon in novemeber.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 9/8/2008 10:04 PM (GMT -6)   
I think Bratcat's feeling is, I'll pee, I'll poop. The difference with the frequency of the j-pouch vs UC is, hopefully, she'll be able to control when (within reason) she goes to the bathroom to do her business. No cramping, no urgency. With UC in full flare, she was going 40-50 times within the first 4 hours of waking up. Even as the prednisone finally kicked in (and it would take weeks), she was still going 10+ times a day. It took weeks (almost 2 months) for her to get into remission where she would go only 2-3 times a day (with no urgency). Her attitude is what was normal before will never be again. She will have a new normal.
--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/8/2008 10:09 PM (GMT -6)   
OH wow 40-50 times.. cant you suffer from malnourishment from that? the most I have gone is 20 a day
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