HealingWell
Search Close Search
☰

So happy with surgery!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/11/2015 7:17 PM (GMT 0)

notsosicklygirl said...
I cried an entire day when I was coming to terms with surgery.

I'm with you there NSSG! I cried all day today after discovering my calprotectin result. It felt like such a set back. I've spent months trying to prepare mentally for surgery, and have an appointment with a surgeon lined up to make a plan, but making that life changing decision is going to be tough.

I had high hopes for Humira, and it's not over yet. I could try other biologics but I need to work and earn money, and I decided after being in hospital in Jan 2014 absolutely no more steroids, because even IV steroids don't work for me, so there's no point taking them. I'm finding this sudden flare up difficult to come to terms with because only a few months ago I had a colonoscopy that showed I was heading towards remission.

UC is so frustrating and challenging!
Posted 12/11/2015 7:37 PM (GMT 0)
I was the same way.. Sick of the ups and downs, never knowing whether you will be well enough to work or how much you're going to spend this year on medical treatments. I also hated doctors appointments and blood draws. I was going to the GI every couple months and getting blood draws each time. Influsions included getting poked, it sucks, no way to live long-term. I had enough.

I refused prednisone at the end too. my calprotectin came back normal but I knew things were getting worse, my symptoms were bad. I had a final sig scope to check the status and things looked severe, even with entyvio and uceris. I knew I needed something to pull me out, either prednisone or cyclosporine and there was nothing left for maintenance. I could have tried imuran or maybe stelara or xeljanz, but I was over it. I knew the likelihood of response for someone with a resistant case like mine was VERY LOW and the amount of time I would get, if any, would be low. I needed an end.

Go to the best, most experienced surgeon you can find. I feel like, overall, I had it pretty easy with surgery. It was a tough procedure for sure, but, I haven't had anything unplanned happen thus far. Everything has been by the book. I had 3 steps. I would definitely recommend 2 if you're a candidate. I had a long history of steroids and I was ill at the time of surgery, I am happy I had 3 steps without complications. Better 3 steps without than 2 steps with. The best things for me right now are taking zero medications and losing my pred weight. I didn't expect to get my old figure back, what an amazing surprise. it is like a rebirth. I guess I shouldn't say those are the best things, the other best thing is being able to leave my house without worrying about pooping myself. Also, feeling the urge and ignoring it. I haven't done that in years. I had some remissions where I was "Normal", once a day, solid, but I still worried about a flare up all the time.
Posted 12/11/2015 7:38 PM (GMT 0)

NiceCupOfTea said...

ks1905 said...
The pouchitis is so much better than UC, it's not even close. I refer to it as UC-lite and it doesn't really effect my life except for the fact that I need to take medicine and I go to the GI still. If I stop taking meds then it flares up but it's been well controlled and has given me back my life. UC got to the point were it was just too much for me to handle. Like everyone who has surgery says, I only wish that I had surgery sooner.

I find this really hard to believe from my own personal experience, I'm sorry.

Just a wild guess here but maybe it's because you don't have a j-pouch?

missingcolon said...
I've also had pouchitis and Keith's right, it's so much better than UC that it's not even close.

I'm not the only one with an actual J-pouch who says that Pouchitis is nothing like UC. Stop being such a troll.
Posted 12/11/2015 7:40 PM (GMT 0)
I am not sure we can compare pouchitis to proctitis.

I haven't experienced both but I KNOW proctitis is HELL.
Posted 12/11/2015 7:46 PM (GMT 0)

ks1905 said...
Just a wild guess here but maybe it's because you don't have a j-pouch?

That makes absolutely no difference. If anything, my surgeon thought having your own rectum was superior to having a j-pouch. Certainly there is no need for the rectum to spend a year learning how to behave like a rectum after surgery, unlike a j-pouch.

ks1905 said...
I'm not the only one with an actual J-pouch who says that Pouchitis is nothing like UC. Stop being such a troll.

I'm not being a troll. I'm being 100% serious.
Posted 12/11/2015 7:49 PM (GMT 0)

notsosicklygirl said...
I am not sure we can compare pouchitis to proctitis.

I haven't experienced both but I KNOW proctitis is HELL.

Why not? Both are inflammation, only one is in an actual rectum and the other in a pseudo rectum.
Posted 12/11/2015 7:51 PM (GMT 0)
My rectum was always my worst part. I guess the question is whether a person with UC gets the same level of inflammation in their pouch (small intestine/TI) as they would with proctitis. It is possible. I have never heard any type of data either way. I know for sure, my rectum was always worse than the rest of my colon, so for me, a jpouch is way superior to my rectum. Of course a healthy person's rectum is always the best case scenario.

Technically with UC you shouldn't have inflammation outside the colon.
Posted 12/11/2015 8:00 PM (GMT 0)

notsosicklygirl said...
My rectum was always my worst part. I guess the question is whether a person with UC gets the same level of inflammation in their pouch (small intestine/TI) as they would with proctitis. It is possible. I have never heard any type of data either way. I know for sure, my rectum was always worse than the rest of my colon, so for me, a jpouch is way superior to my rectum. Of course a healthy person's rectum is always the best case scenario.

My surgeon was talking about a healthy j-pouch vs. a healthy rectum, not a healthy j-pouch vs. an unhealthy rectum.

I can't find any direct comparisons of proctitis vs. pouchitis, but one thing which is clear to me is that pouchitis is a pretty complex condition in its own right.
Posted 12/11/2015 8:10 PM (GMT 0)
that it is. I don't think there is much understanding of it at all. They don't know whether it's crohn's or colitis of the pouch. I don't think they know much of anything :( I would think the inflammation could be varied, mild/moderate/severe. Oddly, often it responds to antibiotics, which is uncommon for UC. Healthy rectum would be a dream!!! None of us seem to be that lucky, haha.
Posted 12/11/2015 8:32 PM (GMT 0)

NiceCupOfTea said...


ks1905 said...
I'm not the only one with an actual J-pouch who says that Pouchitis is nothing like UC. Stop being such a troll.

I'm not being a troll. I'm being 100% serious.

You do this in every j-pouch surgery thread and then the thread gets off topic.
Posted 12/11/2015 8:32 PM (GMT 0)
I have never had a bout of pouchitis so i can't comment on what that feels like but i have talked to enough j pouchers over the past five years to safely say that a bout of pouchitis is NO WHERE near as bad as a UC flare (proctitis or otherwise.)
Posted 12/11/2015 8:54 PM (GMT 0)
I know there are many different results out there, but I think considering the amount of fear an trepidation I had for at least two years before I did it, and all the questions I had, I would be remiss if I didn't share my success....so far. Not that anyone said I shouldn't.
Posted 12/11/2015 10:54 PM (GMT 0)

ks1905 said...
You do this in every j-pouch surgery thread and then the thread gets off topic.

I do have direct experience of what you are talking about. And you can tell me I don't have a j-pouch 'til you're blue in the face, but I have the next closest thing to it: a rectum connected to the small bowel and no colon.

I don't have fistulas or abscesses or probably even a stricture. (My flex sig report didn't mention one, but I won't completely rule it out until I've asked my surgeon or GI.) I just have proctitis, which may not even be Crohn's. (It's a long story, but my surgeon cast doubt on my Crohn's colitis diagnosis at our last appointment.) What I'm trying to say is, it's not Crohn's-related complications which has been making my life utterly miserable, it's rectal inflammation.

And it's not Crohn's or UC 'lite'. As far as I'm concerned, it's the full thing.

notsosicklygirl said...
that it is. I don't think there is much understanding of it at all. They don't know whether it's crohn's or colitis of the pouch. I don't think they know much of anything :( I would think the inflammation could be varied, mild/moderate/severe. Oddly, often it responds to antibiotics, which is uncommon for UC. Healthy rectum would be a dream!!! None of us seem to be that lucky, haha.

Pretty much sums it up.

allswell said...
I know there are many different results out there, but I think considering the amount of fear an trepidation I had for at least two years before I did it, and all the questions I had, I would be remiss if I didn't share my success....so far. Not that anyone said I shouldn't.

Sorry if I derailed your thread. It wasn't your original post I had any contention with at all. Well done on having a success story.

I could only wish everyone could have a similar success story.
Posted 12/12/2015 3:02 AM (GMT 0)
I think the important difference is that Keith's pouchitis is well controlled with meds. For those of you who ever had any meds work, I think we can all agree that any kind of -itis, when it's well controlled with meds, is easier to live with than uncontrolled inflammation of any kind.

To the person who asked a ways upthread about rectal inflammation -- I had very bad rectal involvement before surgery and even after the first operation. My rectal cuff is what I would call "sensitive." It doesn't cause symptoms for me on a regular basis (as far as I know it is not inflamed), but if I irritate it with a lot of high fiber foods in a short period of time, I will have some urgency and increased frequency for a few days. It goes away by itself (no meds). Popcorn, nuts, salad don't cause problems for me. "Woody" veggies like asparagus and squashes can be an issue if I make a whole meal of them. Otherwise the past rectal inflammation has not been an issue.
Posted 12/12/2015 6:13 AM (GMT 0)
I also started this whole thing with proctitis that progressed up to uv so my rectum was the worst. I know after the surgery she said she left as little as possible because it was so bad. That being said I'm doing well. I do get butt burn, i but more itch at night, especially if I slack on the 1/4 teaspoon of Metamucil twice a day, and two loperamide like Imodium. I'm urge some foodstuff don't sit well, but it's 36 hrs at most.. I do worry at those times that I might be getting pouchitis but do far so good. Sorry it's late and I'm too lazy to fix my typos😬
Posted 12/12/2015 3:21 PM (GMT 0)
Cup of tea, can you get rid of rectum and get a jpouch if you want?
Posted 12/13/2015 1:42 AM (GMT 0)

allswell said...
Cup of tea, can you get rid of rectum and get a jpouch if you want?

No, I had Crohn's in my terminal ileum. No surgeon would touch a j-pouch with a bargepole in my case.
✚ New Topic ✚ Reply
12