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Has anyone ever asked if a partial colectomy can be done for left sided UC?

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Ulcerative Colitis
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Burli
Veteran Member
Joined : May 2003
Posts : 1267
Posted 12/2/2009 10:10 AM (GMT -7)
Remove the lining...interesting...I was wondering that, fruitgirl. It does seem you would not want the rectum so that makes sense if that's what they do. In that case I could have a J-pouch or K-pouch just for sake of wanting to stay active running, swimming, etc. Partial for me would not be an option anyway. Do they still do K-pouch; guess that's an ostomy page question.

43, male, UC diagnosed in 1985

Flares occur after some illness: food poisoning, flu, mono...

Flares last 6 months to a year and lately involve several weeks of severe symptoms with lots of diarrhea, blood, pain, fever, dehydration.

Remissions last 1 to 4 years and are absolute with no symptoms 

Current Meds: 100 mg azathioprine, Colazal 9/day, Lialda 2/day,  60 mg 50 mg  60mg 80 mg prednisone

Xanax, Valium for anxiety

Tegretol XR for epilespy

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fruitgirl
Veteran Member
Joined : Feb 2009
Posts : 7150
Posted 12/2/2009 10:16 AM (GMT -7)
As far as I know, yes. The kpouch interests me, in case I can't have a jpouch due to poor rectal strength or something like that. I'm pretty sure it can be reduced due to pregnancy/childbirth, and I plan on having one more kid so long as my UC stays in check. I'm a little apprehensive about it, because pregnancy/childbirth is what triggered my first flare, and I'm scared about that happening again. I just have to remind myself that it's likely it won't be so bad the next time, because I'll know what to do to treat it (I wasn't diagnosed for a good while after symptoms started), and that even if I do flare badly, my son was totally worth it, and another child would be as well!
Co-Moderator, UC Forum

Status: Remission since May 2009!

Symptoms began in November 2008, ~4 weeks after giving birth to my son

Diagnosed with pancolitis on 1/30/09

Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.

Thread with links to UC resources and  information:

https://www.healingwell.com/community/default.aspx?f=38&m=1613482

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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5251
Posted 12/2/2009 10:55 AM (GMT -7)
Aside on additional pregnancy: a few months ago while waiting to see my gastro, who subspecializes in IBD treatment, I overheard 2 mothers with UC comparing notes. One told the other that she has 4 children & her UC flared after each childbirth! However, she looked very healthy & fit (ca. age 40) & seemed full of self-confidence-- so it appeared that she overcame those flares & got back to remission which was continuing. Interesting, no? / Old Hat (30 yrs with left-sided UC ... [etc.])
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fruitgirl
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Joined : Feb 2009
Posts : 7150
Posted 12/2/2009 11:05 AM (GMT -7)
That is, OldHat, and makes me feel better, so thanks! I mean, I'm in such a solid remission right now, and it seems that it just keeps getting better and better. A while back, I was pretty much having 2 BMs/day, then one or two, and now I'm down to once a day or every other day, which was more normal for me pre-UC. Maybe I'll be REALLY lucky and have post-childbirth flares be my only ones! ;)
Co-Moderator, UC Forum

Status: Remission since May 2009!

Symptoms began in November 2008, ~4 weeks after giving birth to my son

Diagnosed with pancolitis on 1/30/09

Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.

Thread with links to UC resources and  information:

https://www.healingwell.com/community/default.aspx?f=38&m=1613482

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rdm
Regular Member
Joined : Apr 2006
Posts : 229
Posted 12/2/2009 12:12 PM (GMT -7)
I personally would not reject a partial removal out of hand, though I think it would be the rare individual that would benefit. If I had only proctitis and had had it for many years then I could see that doing a colonic pouch as opposed to a small bowel J pouch might be an option. The colonic pouch would likely give better function. Personally I probably would not choose this but I definitely would consider it. There probably is not a lot of data out there as the standard surgery protocol for UC is a proctocolectomy. In Chrons they do partial removals but Chrons can involve small and large bowel and the surgical options for total removal are more restricted. However, if I had to remove the entire left side and rectum this would negate some if not most of the benefit of having almost my entire colon remain plus the fact that the disease has already involved a large part of my colon would give me pause that it might recur in what is left. As far as removing a section of the left side and leaving the rectum this might give decent function but a high risk of future UC problems.
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summerstorm
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Joined : Aug 2006
Posts : 6575
Posted 12/2/2009 12:52 PM (GMT -7)
Burli-regardless of what type of surgery you have, kpouch, jpouch or perm ileo, you can still do all those things with no problems.
As for the k-pouch they do still do them, however there are only two or three hosptials in the country (US anyway) that do them, and if you have trouble with it then you have to go to one of those hosptials for treatemnt. Which if you lived near there it wouldnt be a big deal. I looked into it, and the closest one to me was in Lousiana, and im in NC, so thats a drive!
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-

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fruitgirl
Veteran Member
Joined : Feb 2009
Posts : 7150
Posted 12/2/2009 12:55 PM (GMT -7)
Thanks for the info about the kpouch, summerstorm. One reason I have hesitations about an ostomy (yeah, I know that I don't really need to think about these things yet) is because I have really sensitive skin, and adhesives, even on something like a band aid, irritate my skin if I have it on for more than a day or two. So I just don't know if my skin could handle the bag or not.
Co-Moderator, UC Forum

Status: Remission since May 2009!

Symptoms began in November 2008, ~4 weeks after giving birth to my son

Diagnosed with pancolitis on 1/30/09

Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.

Thread with links to UC resources and  information:

https://www.healingwell.com/community/default.aspx?f=38&m=1613482

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Collicat
Veteran Member
Joined : May 2009
Posts : 827
Posted 12/2/2009 1:51 PM (GMT -7)
I wonder why all the best colorectal surgeons at the best centres only do complete colon removal and not partial? That would tell me that they know something we don't. My suggestion is to meet with a few very good doctors and ask that question specifically. They will tell you their reasons. I am sure that it is that this is really major surgery that comes with many risks and the odds of your UC coming back in a colon that is only partially removed is very high. It all comes to weighing risks. My guess is that you could find a surgeon who would only take out part of the colon but are they really looking our for your best interest?
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suebear
Veteran Member
Joined : Feb 2006
Posts : 5698
Posted 12/2/2009 2:15 PM (GMT -7)
The k-pouch is widely practiced around the country; it's the BCIR that is limited to 2-3 hospitals in the country. They are the same surgery but the BCIR uses a proprietary valve.

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

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summerstorm
Veteran Member
Joined : Aug 2006
Posts : 6575
Posted 12/2/2009 8:37 PM (GMT -7)
oops sorry for the mis info, i thought they were the same thing!

When i was meeting with my surgeon, i asked him what the differnece between a colostomy and an ileostomy was and he said the former leaves part of the colon and the latter leaves none.  And that the former isnt done for UC because the UC will just come back elsewhere.

Fruitgirl-if you start to think seriously about surgery, ask the companies for samples and see how it does on your skin!  Or if you want next time i cycle out my bags from the car (its hot down here so i dont leave them in there too long) i will send one to you. 


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-

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fruitgirl
Veteran Member
Joined : Feb 2009
Posts : 7150
Posted 12/2/2009 10:01 PM (GMT -7)
Thanks for the offer, summerstorm! I'm a long way away from surgery right now, though, I think. I'm in a pretty darn good remission, and I've got quite a few drugs to run through before I'll contemplate surgery! But if it comes to it, I hope you're still around and I'll take you up on the offer! ;)
Co-Moderator, UC Forum

Status: Remission since May 2009!

Symptoms began in November 2008, ~4 weeks after giving birth to my son

Diagnosed with pancolitis on 1/30/09

Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.

Thread with links to UC resources and  information:

https://www.healingwell.com/community/default.aspx?f=38&m=1613482

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Shan2013
Regular Member
Joined : Jan 2012
Posts : 56
Posted 6/29/2012 12:21 PM (GMT -7)
"Sorry but the entire colon and rectum have to go or the disease will return to the remaining parts. You don't need to opt for jpouch surgery, you can get a permanent ileo or a k-pouch. Hopefully you won't have to make the choice but it's good to know your options. My UC was primarily limited to my rectum but the entire colon had to go too. Good thing too as the disease would have come back."


There is no proof that colitis is spread after a partial surgery. Post a scientific link stating this and I will believe you. The spreading is based on an assumption that COULD occur.

ex. It's like saying someone has cancer and they get it removed and then it spread to a different body part.


The fact is that the industry prefers to remove the entire colon. I believe that people who have had UC in a certain spot for +5-10 years and it hasn't grow should try for a partial first because you really have nothing to lose.

Post Edited (Shan2012) : 6/29/2012 1:26:17 PM (GMT-6)

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kob.
New Member
Joined : Aug 2012
Posts : 3
Posted 8/23/2012 8:43 AM (GMT -7)
+1 shan2012

Bit late on this thread, but I'm in the 'no remission' - tried a lot of stuff and and unwell most of the time with BMs 10-20 times per day. None of the conventional or trial drugs now seem to have any effect. Had left side UC for 28 years. Talked with surgeon and am about to see another.

My UC has been confined to the lower 25cm with some evidence to 35cm. So in nearly 30 years it hasn't progressed further up the colon. There is no evidence I can find that says if you remove the affected part UC will reappear elsewhere. In fact the understanding of UC in general is very limited, ie. how it is caused, how to treat it (this seems to be on a case by case basis where one person will have very positive response to a drug and another no response). The evidence WRT recurrence after partial removal is not conclusive.

Yes - complete removal of the colon is a guaranteed cure, but that is not an argument for complete removal of the colon IMHO. This is about risk management and all the risk is with the patient - me. So if I am willing to have a partial removal of my colon, what's the worst thing that could happen - yep, have to remove the rest of it at a later date. For me, and I stress - for me, that's a risk I would be/am willing to take.

Further, whether a surgeon does only full or will do partial colon removal does not reflect on whether he is 'good' or not, I just cannot follow that line of thinking.
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ItsAlwaysSomething
Veteran Member
Joined : Oct 2011
Posts : 1414
Posted 8/23/2012 11:07 AM (GMT -7)
I've been told that dysplasia cells were identified a couple of colonoscopies ago. If I am faced with the "certainty" of the presence of cancer, I will definitely explore the possibility of a partial removal. I'm going to be 70 years old and, according to the doctors I've spoken with, am too old for a j-pouch so I would be stuck with a bag. :-(

As the lawyers say, it's all a matter of "facts and circumstances" (e.g. your age, degree of suffering from UC, risk tolerance, etc.).
As my GI's office assistant so sensitively put it "Your cancer is slow-growing so don't worry if you have to wait months for an appt with a surgeon".
So....I'm holding out for as long as I can and see what new procedures are developed.

By the way, did anyone else watch NYMed last night? The surgeons did a partial removal for an 18-year-old crohn's patient.
Female, USA
Diagnosed pancolitis 12/2003, Colazal generic (balsalazide).
Benebiotic probiotic, multi-vitamin with iron, Starwest organic slippery elm powder, L-Glutamine, fish oil, whey shakes and transdermal LDN. Avoid lactose and most gluten products.
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CarolinaKathy
New Member
Joined : Feb 2014
Posts : 2
Posted 2/8/2014 1:20 PM (GMT -7)
My sister has UC and is looking for surgeons that will do a partial colectomy rather than a total. Please let me know of any surgeons. Thanks.
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Tornado6
Veteran Member
Joined : Mar 2013
Posts : 1155
Posted 2/8/2014 1:32 PM (GMT -7)
Hello, old thread.

So my non-quack IBD Specialist and surgeon DID offer me a resection. On 2/4/2104. I have well-controlled UC, but two strictures at about 15-20 cm. If I opted for this surgery, I would need to stay on my current meds, because the remainder of my colon would still be subject to active disease otherwise.
Ulcerative colitis / 36 / female
Two large bowel strictures requiring surgical intervention.
Trying to hold out until June.

Allopurinol - 100 mg
Imuran – 50 mg M - F / 25 mg weekends
Remicade - 7.5 mg / kg @ 8 weeks
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SombreNote
New Member
Joined : Jul 2012
Posts : 1
Posted 10/15/2014 10:11 AM (GMT -7)
I had a chance to talk to the surgeon (at University of Michigan) who is preparing to preform my ileoanal anastomosis (J pouch) surgery if the current meds I am on don't work.

I asked about partial colectomy because of the fact my inflammation is so left side oriented. She said that there was no real evidence either way whether my inflammation would reoccur if the inflamed portion was removed. Yet, she explained that the reason such a procedure would be impossible is because the colon's blood vessel sources are arranged in such a way that if I wanted to attach the high descending (or left most transverse) part of my colon to the rectum (cutting out the inflammation from the rectum) the lose end could not stretch anywhere near as far as would be necessary. Apparently, the blood vessels the feed the colons top stretch make a juncture in the very middle, and there is just no wiggle room for the cables to be pulled down. Theoretically, if I did not have to have the it cut out so high it would be possible. There are also blood sources that come into the low-ish side around the sigmoid region, and those would not need to be stretched as far to cross the distance of rectum.

Resectioning is possible as long as the portions of the reconnections do not have to be stretched outside of the range of the blood sources.

Background:

I have rectal and sigmoid focused UC which flairs spring and fall seasonally.

My disease had been relatively mild until very recently, and was well managed with mesalamine suppositories and enemas. After a while the disease progressed a little higher in my colon, and become resented to steroid treatment. So now I sit in the hospital, and I am going to try to remicade for the first time to see if it will reverse the course of my flair. If it does not, I am going to start the surgery progression to a J-Pouch.
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fightUC
Regular Member
Joined : Jun 2011
Posts : 497
Posted 10/15/2014 12:00 PM (GMT -7)
Out of all the medical specialties, surgeons have my highest respect.

My issue has always been mild inflammation in the proctosigmoid region.

The issue it seems is that most GI docs do not support surgery for IBD, because that would mean the entire GI specialty has failed to provide a solution for IBD.

Surgeons cure disease, GI's treat it with their medicine.

I would love to know of a surgeon who does partial colectomies.

My grandfather had a partial colectomy for stage IV colon cancer at te age of 84, and has been doing well after the surgery. They did not remove his entire colon, however the cancer did already metastasize to the bones it seems. The tumor was approximately the size of a golf ball - tennis ball.
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DBwithUC
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Joined : Feb 2011
Posts : 4529
Posted 10/15/2014 1:57 PM (GMT -7)

fruitgirl said...
I think that in j pouch surgery the lining of the rectum is removed, which would mean UC woudln't be an issue in the rectum anymore, I believe.

I was hoping someone would come along who has full access to one of those journals. I'm sure in the full text it breaks down the chance of additional surgeries for each type of first surgery.

sent article in email
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DBwithUC
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Joined : Feb 2011
Posts : 4529
Posted 10/15/2014 2:19 PM (GMT -7)

CarolinaKathy said...
My sister has UC and is looking for surgeons that will do a partial colectomy rather than a total. Please let me know of any surgeons. Thanks.

I think after 50% or so of the colon is removed, there would not likely be solid stool. If the sigmoid part is gone, some sort of reservoir would likely still need to be created.

I am also unsure if insurance would cover a partial if the standard of care is full.

www.fascrs.org/patients/conditions/ulcerative_colitis/
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