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Ulcerative Colitis
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Posted 3/7/2008 6:27 PM (GMT -7)
so I am back from the drugged sleep of the colonoscopy patient... wow, was I worried about nothing! The Demerol/Versed cocktail rocks! Unfortunately, my scope results do not rock. My GI told me that there is about 10 inches of inflammation, & that the rest of my colon is filled with hundreds of pseudopolyps. I looked up pseudopolyps- they are inflamed masses of tissue that resemble a polyp, but are caused by iflammation & ulceration in the tissue. Has anyone else on here had these show up? Per usual, my GI votes for surgery. We did talk about Humira- he's willing to give it a shot but is not expecting any miracles. Neither am I.... I'm going to call him next week to figure out when I can start it. And we both decided that Humira is truly my last gasp- after trying this, there will be no drugs out there that I haven't been on, with little improvement. Soooo......I'm hoping Humira will buy me a little more time, but in all likelihood, surgery is in my near future. Which is sort of a relief, in some ways. I am very tired of this disease, & the med fatigue, & the other side effects from the drugs. It would be very nice to be free of it all, & to be able to eat what I want when I want, not take meds, etc. And the scope result has made it easier for me to go into a surgery such as this. Still sucks, though. Soooo- that's all, folks!
Posted 3/7/2008 7:37 PM (GMT -7)
I'm sorry to hear about your results. That sounds very painful. I wish that you could get better.
Posted 3/7/2008 8:00 PM (GMT -7)
Gotta love those scope drugs eh??? :) I'm glad you made it thru the scope ok, just sorry about the results. At least if you were to try the Humira and it doesn't work for you, then you can honestly say that you gave it your best shot right? We all fight the good battle everyday and sometimes we win and sometimes we don't - it's just the draw of fate I guess. Hopefully the Humira will help you!
Posted 3/7/2008 8:10 PM (GMT -7)
Eva Lou--you sound very optimistic to me and it sounds like you also have a very understanding and "on top of it" GI--who lets you have information galore about your colonoscopy and results as well as treatment. I pray the Humira works and if not, you truly do deserve to get off of this rollercoaster ride and go for the surgery. UC is just so different in each of us and I'm beginning to realize the meds are, too. You hang in there and keep us posted!
Posted 3/7/2008 8:33 PM (GMT -7)
Lets go Humira!
Posted 3/7/2008 11:11 PM (GMT -7)
Congrats on making it thru the c-scope!!!!!!!! RE many tiny pseudopolyps-- I know a UCer who has that condition going back many yrs, even though her inflammation has been under control with Colazal for the past three. She gets an annual c-scope, but in the absence of other symptoms her gastro is calm about that. Best wishes for Humira to bring the relief you need. Please keep us posted. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 3/8/2008 12:47 AM (GMT -7)
Hi Eva Lou...yeah, the meds are pretty good...great it went OK.

Regarding the results...I guess if the Humira doesn't get you to where things are improved, you have a difficult decision to make..or maybe it will be easier to talk surgery then than it is at this time.

How long would you be on the Humira before it's nixed?

I do hope it works for you.

quincy
Posted 3/8/2008 3:21 AM (GMT -7)
thanks everyone... I don't know how long one gives Humira a shot, before calling it quits. I'd imagine the failure protocol similar to Remicade's- you can't last the 6-8 weeks between shots w/out becoming badly symptomatic, or you have a bad reaction to the drug. I will try it, since my GI is willing & he tells me insurance will cover it as long as he does the legwork. It sort of feels like a roller coaster & I'm just on the ride, like I don't control the outcome. I know at heart I do, but it just seems like I'm barreling down a scary road. Although UC can be pretty scary too, the meds, the accidents, the daily hassle of living while flaring. So... whatever happens, you know I'll post about it! Oh, & princesscolon- no, it's not painful- I feel like my normal old self. Although it's totally gross looking- don't google it! nono
Posted 3/8/2008 8:48 PM (GMT -7)
Hi Eva!

Regarding the pseudopolyps - I don't think you should be worried. I've had them for years and the only thing my GI has said about it is that their presence means the inflammation has going on for a LONG time, most likely more than 10 years. Now, seen as I've been diagnosed 5 years ago, it means this DD has been with me very long indeed, and that is most likely the case with you as well. The only trouble with that is it raises the statistical risk of colon cancer but with proper monitoring (like getting a colonoscopy every 2 years or less) it really shouldn't be a cause to get your bowel removed over...
Posted 3/9/2008 6:11 AM (GMT -7)
nah, the pseudopolyps aren't a reason for surgery- it's the constant flare for the past 2+ years, despite the heavy-hitting meds. That's interesting though, the fact that the polyps mean the disease has been present for a long time. My GI didn't seem too concerned about them, he bascially indicated the same thing you just told me. I... ummm.... well I've decided against Humira- for a number of reasons. I'm calling my surgeon on Monday to get the ball rolling, once and for all. Will keep everyone updated, per usual.

Posted 1/25/2012 1:17 AM (GMT -7)
hi eva lou! i realize this post was like 4 yrs ago but i just typed in pseudopolyps and yours came up... i hope u still check the forum. well, i am now in the same boat... uc healing but those darn pseudopolyps are giving me a high risk of colon cancer so doc wants my colon out :/ i'm freaking!!!! so just wondering how it all went for u and if u have any advice? pros/cons? thx!
Posted 1/25/2012 7:07 AM (GMT -7)
I think your are making the right decision; you've tried a lot and I think, don't get mad at me, you have been in denial about how much you have compromised your life thus far to UC. No one has fought harder than you to keep a colon and I'm amazed at your tenacity. Why continue polluting your body with chemicals when it's likely you will ultimately need surgery. Welcome, a bit early, to the other side :)

Sue
Posted 1/25/2012 7:25 AM (GMT -7)
hi there! Interestingly enough I had a scope done in August, which showed similar results- inflammation, pseudopolyps, etc. My GI still recommends surgery. I met with the surgeon of my choice the beginning of this month, & am still not convinced surgery is the best option at the moment. My GI & my hematologist both recommend surgery for the colon cancer risk- I asked the surgeon if this type of surgery is done strictly as a cancer preventative, & he replied NO. It is done for that reason occasionally, but the vast majority of times it's quality of life, or an acute situation. The surgeon told me that since none of my biopsies showed dysplasia way back in 2008, & none of them show dysplasia in 2011, that my chances of developing colon cancer are really not much higher than the average persons. Which was a big relief... I'm still on Humira & doing alright- not great, not symptom free, but alright. My quality of life is not bad these days. Surgery is still on hold for me- the surgeon I met with is very understanding of my hesitation, but also a voice of reason in that if I do wind up with a total proctocolectomy, my life will be much the same as it is now. Aside from crapping my pants occasionally! tongue
Posted 1/25/2012 9:22 AM (GMT -7)
I think the longer you can keep your colon, the more chance you have that new therapies will be able to help. Lots of stuff in the pipeline.

Glad you quality of life is OK'ish. Do you think some of this is from your iron infusion(s)? How did those go?
Posted 1/25/2012 9:46 AM (GMT -7)
well, the iron infusion sure didn't hurt. It did nothing for my UC, but gave me back some much-needed vim & vigor! When I last saw the hematologist, about 4 months ago???, my levels were still decent, but dropping slowly. I get labs done again in May, & will most likely need another infusion by the summer. I tend to agree with you, the longer you can hold on to your colon, the better- not that there are many new therapies I can see (mainly variations on the existing biologics), but I just can't shae the feeling that someday my UC will go back in remission. And as long as I'm not home in bed, miserably ill, well why not keep it?

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