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In what state was your disease when you had surgery?

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Posted 7/17/2013 11:36 PM (GMT 0)
I know some of you were very ill when you had surgery, but some of you were more like me. I have 15 - 20 cm of very active, refractory disease. I'm getting near the end of traditional medicine's options, and my GI now mentions surgery at every visit.

How bad was your colon when it was removed?
Posted 7/18/2013 12:44 AM (GMT 0)
My colon was so bad at the time of removal my surgeon said it was falling apart in his hands. He later asked me how on earth I lived day to day with that "thing" inside me. To this day I'm still not sure how I managed! Sorry you are still having a tough time. Best of luck to you...
Posted 7/18/2013 12:44 AM (GMT 0)
My surgeon said my colon was in terrible shape when it was removed. The pathology said that I had severe chronic UC throughout the entire length of my colon. Along with that I was totally drug refractory. My initial diagnosis was only 9 months before surgery....and at that time I had mild proctitis in approx. the first 20 cm of my colon. In the last 4 months my disease spread like wildfire. I was told that I definitely made the right choice in having surgery.
Posted 7/18/2013 12:49 AM (GMT 0)
I am at the opposite end of the spectrum. I was not able to achieve a full remission with meds except on high doses of prednisone, so I don't count it as remission. However, Remicade did lessen my symptoms, but not to a point where I was really happy with my quality of life. I had left-sided UC with about 35cm of moderate to severe inflammation. I made the decision to have surgery while on the healthier side.
Posted 7/18/2013 1:10 AM (GMT 0)
My colon was riddled with pseudopolyps, some of which were pre-cancerous. There were too many to remove individually (with an endoscope), so the whole colon had to come out.

Simultaneously, I have primary sclerosing cholangitis, which results in liver failure, and am on the transplant list. The colon surgery caused my liver to "decompress" and I developed ascites (fluid in the abdomen) and edema (fluid in the extremities) as a result. The brilliant team of doctors thought I just had a lot of "gas" that needed to be "walked off." I suffered through 11 days of agony before they discovered the fluid and drained it (4.5 liters) from my belly.

That was the most painful and difficult experience of my entire life so far. Can't wait for the liver transplant!
Posted 7/18/2013 2:48 AM (GMT 0)
Universal severe colitis was the finding of the pathologists. Unlike you special folks my surgeon had nothing special to say about the state of my colon, haha. I also had backwash ileitis but since colectomy my small intestine is totally clear.

I don't think an arbitrary classification of inflammation should make your decision. It should be based on quality of life. We have a member here (is it Sue?) whose only inflammation was a quarter sized ulcer in the rectum that wouldn't respond to any drugs and was not livewithable. When you're ready, you're ready. You don't have to prove it to the UC police.
Posted 7/18/2013 3:19 AM (GMT 0)
I had pancolitis and my GI quit a colonoscopy because my tissue was too friable for her to make the flexure turn last summer. Something, I suspect Imuran, has healed part of my colon. I have lovely pink tissue above 20 cm.

Nothing seems to get the last 15 - 20 cm though. I've never not bled since I got UC. I've never not had horrible urgency. I can't fart. It is mostly one big, bleeding ulcer down low.

I'm interested in those with persistent disease in the same area because I wonder how it affects potential pouch construction.

I also don't want to 'throw out' all of the hard work that healthy 90% represents, because it has been a battle and there is visible progress.
Posted 7/18/2013 12:25 PM (GMT 0)
For year after year my scopes showed just mild pancolitis, although I used low dose pred much of that time. Was largely med refractory although I got some weak benefit from biologics, which However gave me side effects that caused me to fail on them. Just prior to my surgery, confirmed by the removed colon afterwards, it was revealed that year after year of mild UC had removed the accordian like shape from my colon and instead it had the smooth appearance of a giant drain pipe. In spite of that, I vrtually never saw boood, had virtually no rectal symptoms (had LOTS of chronic pain deeper inside abdomen though) and most days I managed about 3-4 semi-formed BM's per day, mostly in the morning before and aftr breakfast. I was able to work, travel , be physically very active etc year after year but quality of life was low due to chronic gut pain, fatigue, and unpredictable urgency. Fortunately I managed to have surgery done during a full "mini-remission", which aided my recovery. I choose to stick with my end ileo, which is working fantastically, though I retain option of jpouch but if for some reason this ever doesnt work out I may opt for BCIR- I am not keen on jpouch.

Post Edited (Probiotic) : 7/18/2013 6:32:58 AM (GMT-6)

Posted 7/18/2013 12:54 PM (GMT 0)
You also want to ask yourself if you want to be on these strong drugs the rest of your life even if the stubborn part of your colon heals since UC is forever. The condition of your colon/rectum will not effect your potential j pouch. It's all removed with the exception of a centemeter or two. It is so important to have a highly skilled surgeon who has done lots of j pouches. I had pancolitis and my rectum was horribly effected. Knock wood....not a stitch of trouble in 3 years.
Posted 7/18/2013 1:29 PM (GMT 0)
My UC was pretty much limited to a quarter size ulcer in the rectum. I waged a two year battle that started with a severe flare but continued as moderate to severe over two years. The problem was that none of the UC drugs or enemas could heal that spot and I was prednisone dependent. I opted for surgery because I feared long term prednisone use AND I wanted my life back. That tiny spot of UC robbed me of a quality life. This was 12 years ago; I've never regretted my decision.

Sue
Posted 7/18/2013 1:29 PM (GMT 0)
It is not a matter of "how bad is your colon". It is a matter of "quality of life". And risk verse benefit in terms of "quality of life".
Posted 7/18/2013 7:21 PM (GMT 0)
I was on my way to Pan Colitis when I had mine.

The low end meds didn't help and it was starting to effect my panreas so I was throwing up alot. it was more due to the meds not working and side effects. If the low end stuff did this too me there was no point of trying the higher end stuff that had even worst side effects and complications.

I'm glad I did it!

Posted 7/18/2013 7:46 PM (GMT 0)
Just to echo Pluot, the surgery decision is not about how far gone your colon is. I had left-sided colitis, that while it wasn't the worst, it was not responding to pred. To make thing really complicated, I had a twisting fibroid stricture around the inflamed sigment, which was going to simply close up the works for good. I had the choice of waiting a couple of months for that to happen and get rushed into ER for an emergency colectomy by whatever surgeon was available - who may or may not have had much experience doing it, or, planning it and having the top surgeon in the city.
Posted 7/18/2013 9:33 PM (GMT 0)

Pluot said...
When you're ready, you're ready. You don't have to prove it to the UC police.


Somedude where are you?!?!?!
Posted 7/19/2013 2:17 AM (GMT 0)
Question, I was recently dx with UC. My mom had it for 20 yrs and then got a j-pouch. I too am concerned about the "quality of life" factor. (aka - living with UC for the Rest of my life!?) My mom is now considered disabled, but feeling great for the most part. Can eat and drink whatever she wants, just has to use the bathroom a lot. Can most people work when you have a j-pouch?

Thanks - Em
Posted 7/19/2013 2:38 AM (GMT 0)
Hi Emily,
Sorry about your UC dx. Just curious as to why your mom is considered disabled if she feels great. I think it's safe to say people carry of with their lives as usual after surgery and work, play, ect.
Posted 7/19/2013 8:06 PM (GMT 0)
     My disease was in New Jersey along with me...just joking about the title.   Actually, my colon was not in bad shape, only minor diverticulosis.  My rectum was a mess.  Not sure exactly the extent of the disease, but my surgeon said it was BAD.  My GI doctor only wanted me to try more and more meds but I had become prednisone dependent for far too long.  Tried 6MP (seven years on that and it did NOTHING), Remicade (built up antibodies and it failed after 3rd infusion) and then Humira (no change after three months). 

     I suffered for twelve long years and had enough. I was 63 at time of surgery, total colectomy with end ileostomy.  I will be 67 next month and feel great!

 

Posted 7/19/2013 9:42 PM (GMT 0)

Probiotic said...
it was revealed that year after year of mild UC had removed the accordian like shape from my colon and instead it had the smooth appearance of a giant drain pipe.

Apparently, mine looked like this only a month after becoming symptomatic :p.
Posted 7/19/2013 10:12 PM (GMT 0)

Silent Lucidity said...

Pluot said...
When you're ready, you're ready. You don't have to prove it to the UC police.


Somedude where are you?!?!?!

LOL!!!

Emily89 I gotta ask the same question about your mom that Marianne did. There's no reason in and of itself why a functioning j-pouch would lead to disability or an inability to work. There is probably an underlying or unrelated issue... would be curious to hear what it is. I'm 26 and I intend to work (and play and do sports and travel etc) with my j-pouch for the rest of my life!
Posted 7/20/2013 12:24 AM (GMT 0)

TheDuque said...
Apparently, mine looked like this only a month after becoming symptomatic :p.

I had that, too, as far back as 2006/7 at least. It was called a 'featureless' colon. At the time, I didn't recognise it for what it was, but now I know better. Ah, the benefit of knowledge in hindsight: absolutely love how I learned everything about my disease years too late, literally akin to closing the stable door after the horse has bolted.
Posted 7/21/2013 6:03 PM (GMT 0)
My colon fell apart before the life-saving surgery.
Posted 7/21/2013 10:26 PM (GMT 0)
Colon cancer and Colitis. A ileo was not discussed ahead of time. A small amount was to be taken out and I would be on my way. Woke up in the hospital room with a permanent ileo. I didn't know what an ileo was. But I was told I had two years to live due to the amount of cancer. Thank goodness for the internet and forums like this one. I got up to speed as fast as I could. It's been a year and a half and I do everything I did before. I do have to keep an eye on it, especially when I'm out and about. Life is actually easier then before. Having Colitis is harder then keeping an eye on the appliance. And cancer would have taken me out.
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