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So happy with surgery!

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Ulcerative Colitis
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Posted 12/5/2015 7:17 PM (GMT 0)
I am 16 months post takedown and doing great. I have my life back as the saying goes, but really that's how it feels. I think I go about 7 times a day, usually sleep through night, eat whatever, the consequences are temporary, have no urgency, pass gas😊 which actually feels nice to do lol. I can be noisy in the bathroom, but not bad. I can actually kinda. Control that. Bathroom trips are quick! I could prob go less if I tried harder. Any questions feel free.
Posted 12/5/2015 7:34 PM (GMT 0)
Glad to hear you're happy with your surgery. Feels good to say goodbye to uc for good, huh?
Posted 12/5/2015 9:30 PM (GMT 0)
Congrats and thanks for the update! I am just a couple of weeks post takedown and feeling far better than I imagined I would. Surgery has been a big relief for me as well.
Posted 12/5/2015 10:01 PM (GMT 0)
Congrats to you both. Having this procedure certainly changed my life for the better. yeah :-)
Posted 12/6/2015 4:27 AM (GMT 0)
Glad you are doing well after the surgery. Do you get urgency with those seven trips? Would there be a problem holding it for an extended period?
Posted 12/6/2015 2:56 PM (GMT 0)
I have not experienced any urgency with my post-surgery BMs. I am able to hold it until it's convenient to go to the restroom and have found that most of the time my need to go is primarily because I have to pee.
Posted 12/6/2015 3:22 PM (GMT 0)
Did you also say "goodbye" to fatigue? I am considering surgery partly because I'm losing my hair, possibly due to Humira, but possibly the one dose of methotrexate I took (hair came out in handfuls after one dose), but mainly because I want to get on with my life without further setbacks.

However, Humira gave me my "life back" by giving me my energy back even though I haven't fully reached remission. I can function on 4-6 hours sleep if I have to. This would not have been possible before Humira as even when in remission I had major fatigue problems and needed a lot of sleep to function.

If I have my bowel removed I will no longer have Humira, and if the fatigue returns (as it is probably linked with how my immune system operates) I will lose my quality of life again. This is what worries me. Also as other autoimmune diseases run in my family, removing part of my bowel probably won't solve overall health issues.

....but I don't want to lose any more hair :-/
Posted 12/6/2015 3:37 PM (GMT 0)
all swell - Good to hear your surgery went well. So are 7 bowel movements the expected for where you should be at this point? Does it go down even more after time?

UCyousee - the hair loss had me seriously considering surgery too. I am amazed that the hair loss just doesn't seem to stop either. I kind of thought it would level off eventually. So I recently bought a wig because my kids were starting to notice the bald spots. I have to say....I am now a wig addict. No one can tell I am wearing a wig and it looks great.

I think the fatigue bothers me more than any of the other UC symptoms. I would skip to surgery if I could be guaranteed more energy.
Posted 12/6/2015 3:55 PM (GMT 0)
OT - Elpisunbreakable. I suspect my hair loss could be related to Alopecia Areata...an autoimmune disease! It fits with the photos I see online with women who have this :-/

EDIT - or it could be down to Humira or that one dose of Methotrexate. Time will possibly tell.

Post Edited (UCyousee) : 12/6/2015 8:59:46 AM (GMT-7)

Posted 12/6/2015 4:00 PM (GMT 0)
Have you tried a wig yet? The first time someone suggested it to me, I wanted to punch them in the face. (Don't do that to me :) But then I tried one and realized that it is only bad wigs that look fake. I got one to match my hair color so I leave part of my hair out to blend in with the wig. It is surprising comfortable and warm! (You don't think about these things but hat hair loss causes your head to get cold.) The wig I got is a lace cap so that it looks like your hairline. You also want a monofilament wig so you can part it anywhere. The best part about it is that it takes seconds to get ready now....just pop on the wig and out the door.
Posted 12/6/2015 4:27 PM (GMT 0)
Great to hear you're doing so much better!!!
q
Posted 12/6/2015 4:42 PM (GMT 0)

dusty8105 said...
Glad you are doing well after the surgery. Do you get urgency with those seven trips? Would there be a problem holding it for an extended period?

I never have any urgency and average going around 4x a day. Even though it can get uncomfortable, I can hold it for a really long time if need be. Like when I'm at a beach, boat, concert, ect. That sort of situation.
Posted 12/6/2015 5:27 PM (GMT 0)
I can hold it too. I am only a few weeks since my 3rd step and I have been going a lot but I can wait if I need to or want to. I was out shopping and I felt the urge and I kept doing what I was doing, the urge went away. I didn't rush to get to the bathroom when I got home. At the same time, surgery is not easy. It has the potential for huge benefit and also the potential for huge risk. It should be a last resort, I don't know if hair loss would be a reason that would drive me. Hair loss with severe symptoms, yes, but well managed UC, I don't know if I would go to that extreme. I would try to find the root of the hair loss - surgery may or may not help depending. I am still tired. Always was, probably always will be. I was tired for many years before I was diagnosed with UC.
Posted 12/6/2015 8:57 PM (GMT 0)

notsosicklygirl said...
I can hold it too. I am only a few weeks since my 3rd step and I have been going a lot but I can wait if I need to or want to. I was out shopping and I felt the urge and I kept doing what I was doing, the urge went away. I didn't rush to get to the bathroom when I got home. At the same time, surgery is not easy. It has the potential for huge benefit and also the potential for huge risk. It should be a last resort, I don't know if hair loss would be a reason that would drive me. Hair loss with severe symptoms, yes, but well managed UC, I don't know if I would go to that extreme. I would try to find the root of the hair loss - surgery may or may not help depending. I am still tired. Always was, probably always will be. I was tired for many years before I was diagnosed with UC.

NSSG,

You are only a couple of weeks out from surgery, with any surgery it takes time to recover from and regain your energy. You should be judging your energy levels 3-6 months out.

You should monitor your B-12 levels it can be an issue with J-pouch patients. My b-12 levels are normal but when I get a B-12 shot I feel great for a few weeks. I just wish my GI would write me a script for it; I need to push a little harder for it the next time I see him.
Posted 12/6/2015 9:03 PM (GMT 0)

UCyousee said...
OT - Elpisunbreakable. I suspect my hair loss could be related to Alopecia Areata...an autoimmune disease! It fits with the photos I see online with women who have this :-/

EDIT - or it could be down to Humira or that one dose of Methotrexate. Time will possibly tell.

Methotrexate is infamous for hair loss. There can be lots of reason for hair loss, it may not just be one thing but a combination of things.

I am also 16 months out from my take-down surgery and over Thanksgiving my mother told me that my hair is looking thicker than it has looked in a long time; I've noticed it too. I've always had thick/full hair but sometimes when I got really sick I would lose some of it.
Posted 12/10/2015 3:33 AM (GMT 0)
Thanks everyone! I think some people go less but I'm ok with where I am at. Once an awhile the feeling comes on a little strong all the sudden, but I can easily hold it. Sometimes I forget or get distracted and the feeling subsides for quite awhile. Food robably has something to do with it. When I go it's quick painless and done. It did take a while for me to settle on though. about 8 months -12 months. I was a little worried at first. I think I had a fissure.
Posted 12/10/2015 6:04 PM (GMT 0)
Did any of you have significant rectal issues (inflammation etc) before surgery? What about now?
Posted 12/11/2015 4:01 AM (GMT 0)
I did. my rectum was in terrible shape since I developed UC practically. I had a few breaks but it was always almost completely unmanageable. I plan to write a much longer account of everything from start to finish after I get a better handle on the final outcome. I am still at the point where I have good days and bad days, but having the ability to wait to use the toilet would have been impossible for me before surgery.
Posted 12/11/2015 3:27 PM (GMT 0)
Allswell,

Like your subject says I'm so happy with surgery too. But my outcome wasn't as good as yours. I have everyone's worst fear that they end up with chronic pouchitis and a diagnosis of CD after the surgeries.

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.
Posted 12/11/2015 4:54 PM (GMT 0)
Uniform Charlie, I had surgery over 20 years ago, as a child, and still have rectal inflammation (cuffitis).

Surgery was a phenomenally positive experience for me that restored my quality of life, but I think it's important for anyone considering surgery to be realistic about the fact that it's not exactly a cure for UC, it's more like the ultimate treatment since it removes the primary target of the disease's attack.

I'm still considered a UC patient by doctors and insurers, still can't donate bone marrow, etc., because the disease will always be there (and now rears its ugly head via skin and joint problems, which are common extraintestinal manifestations of UC). I've also had pouchitis and Keith's right, it's so much better than UC that it's not even close.
Posted 12/11/2015 5:21 PM (GMT 0)
It's tough to say how it will work out for another person. I feel like if I got pouchitis or cuffitis, I would be in a worse situation than you are ks, simply because I have never responded to any of the available treatments. What would work for me? Probably nothing. Not to be negative but I've tried and failed everything. You responded to antiTNF so that's more likely to work for you. For nonresponders, inflammation could be much less controllable. I don't want to find out.

I had my cuff stripped, hopefully that helps to prevent cuffitis.
Posted 12/11/2015 5:25 PM (GMT 0)
I'm edging closer to joining you all in the surgery camp after 6 months of Humira which was positive in giving me loads of energy, but didn't put me fully in remission.

I thought I was on the mend but I took a turn for the worse last Friday. I thought it might be gastro but my Calprotectin levels are 5000 today and I'm running out of options. I'm scared to face the decision to have surgery in case I regret it, but I'd rather elect to have surgery than end up having emergency surgery due to bowel perforation.
Posted 12/11/2015 5:33 PM (GMT 0)

UCyousee said...
I'm scared to face the decision to have surgery in case I regret it, but I'd rather elect to have surgery than end up having emergency surgery due to bowel perforation.

At the very least may I suggest thinking about where you might have the procedure done and who you want as a surgeon. Make an appointment for a consult with your list of questions. Being well informed and prepared makes thing seem a lot less scary. I was one of those patients whose colon was on the verge of perforation. I'm glad I got in when I did. My surgeon said my colon was a total disaster. Best to you.
Posted 12/11/2015 5:38 PM (GMT 0)

UCyousee said...
I'm edging closer to joining you all in the surgery camp after 6 months of Humira which was positive in giving me loads of energy, but didn't put me fully in remission.

I thought I was on the mend but I took a turn for the worse last Friday. I thought it might be gastro but my Calprotectin levels are 5000 today and I'm running out of options. I'm scared to face the decision to have surgery in case I regret it, but I'd rather elect to have surgery than end up having emergency surgery due to bowel perforation.

I am really sorry you're in the position of having to make a decision like this. It is the worst. I cried an entire day when I was coming to terms with surgery. It was like a mini funeral for my colon. I am one month out from my takedown and I don't miss my colon at all. I am seeing improvement over time. It's not every day but over a week or two, I can see that things are getting easier - less trips, less liquid, able to wait longer, passing gas... Even with the ileo, things are easier and you feel better. You can eat what you want and you're liberated from all the pain, drugs and time spent on the toilet.
Posted 12/11/2015 7:05 PM (GMT 0)

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.

For me, proctitis post-surgery certainly is not Crohn's-lite but Crohn's-full on. If you're in remission, fair enough, that's one thing, but if you still have active inflammation then I don't see how it can be miles better than UC.

Frankly I don't consider having to take immunesuppressants a success story - I just don't. I partly had surgery to get off all these godawful drugs in the first place. My teeth are crumbling away because of them. That, as far as I know, is the only long-term side-effect I've had from them, but it's bad enough.
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