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I am so sick of this I am going to begin researching surgery

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Posted 5/30/2008 2:25 PM (GMT 0)
I can't stand this effing disease, seems the more drugs I take the more illnesses I get.  I really just can't live my life like this anymore, flaring and getting sick and dealing with all this crap.  Plus my kidney disease is not going so well either, not so bad but not good. 

I figure, I have to pee 4-6 times a day, what's a little poo to go along w/it?

I'm not planning on doing this tomorrow but, I just want to weigh out my options.  I think I am a candidate for jpouch.  I will of course try remicade first and maybe even Humira if I can somehow get on that.

Plus I have crapped my pants twice in the past week and not too happy about that. luckily at home and both times I was right next to the toilet fighting my pants off.

I guess a switch just flipped in me and I just don't want to deal with this anymore......I may end up needing a kidney transplant in the future (uknown if my MCD is FSGS, if MCD I should have been in remission by now and am not) and this just tops it.  I just want to deal w/it and move on. 

Posted 5/30/2008 2:46 PM (GMT 0)
Sometimes, Beth, we have to do what we feel is right. If it gets to a point in which life is becoming miserable then maybe it is time to persue surgery. My switch has been thrown for a long time and the only thing that is stopping me from having surgery are two things - one, the down time in which I just can't do at the moment because of Gma and two, it really does scare me. It's fear of the unknown that is keeping from taking that leap. But I suggest you research it in detail. Visit our Ostomy forum if you haven't already done so - if and when you have surgery, it's best to go in with eyes wide open.
Posted 5/30/2008 2:54 PM (GMT 0)
I've been researching it lately also and have found a lot of helpful information on the ostomy board, and also on www.UOAA.org which is a really great site. I've given myself one year, like I do with my tattoos - If after one year I still really want to it, I do it. Besides, I just started a new job so I have to wait till my insurance kicks in and I've worked a year to qualify for FMLA/STD leave if I need to and I have enough PTO saved up to give me a full paycheck after surgery so I can still pay bills! The more I read about it though, the more I really want to do it. It seems a lot less scary when you see how others are living life so much healthier and happier.
Posted 5/30/2008 3:01 PM (GMT 0)
Beth,

I have been reading your posts for some time now and I think it's wise you are considering your next option. You have suffered greatly. The best reason for surgery is a lack of quality of life. If you find yourself having to make concessions for your disease that's reason enough to pursue surgery.

Sue
Posted 5/30/2008 3:38 PM (GMT 0)
I'm right with you, Beth. Although I feel a bit guilty for considering it when I've only had UC for a year. But it's causing me physical pain and embarrassment (I cannot even put into words how embarrassing it is to crap in your pants!). It's causing friction b/w my parents and me (as per my rant/venting thread) and I know it hurts them too to see me suffer. I've cried numerous times over the last couple months b/c of this disease. I feel like UC is holding me back and interfering

with my goals/dreams. I already lost my teenage years to depression and self-esteem issues, and now I'm losing my adult life to UC. It's all so bleak and sad.

But, anyway, I was just rambling. I've started a little research, too. I figure next summer would be a good time since I was going to take a year off after graduation anyway.

Posted 5/30/2008 3:50 PM (GMT 0)
Ive had UC for 14 years now all through my twenties. I have suffered greatly due to the symptoms, emotional aspects, and physical as well. I have had some very hard times with this stuff. I have gotten to the point of giving up, gotten very depressed, and considered surgery because due to my other medical issues I am not a candidate for Remicade.

However I am getting excited to see some promising new research being done at the molecular level. If you are not in a life threatening situation, I would recommend hanging in there for a while longer - my opinion. I have done it 14 years now and I continue to hang in there with hope... They cannot put your colon back in.

I have crapped my pants many times....sometimes near the toilet, sometimes not. I have crapped my pants in shorts and had brown rivers running down my legs. That is not fun. I have crapped my pants in the car and had to drive an hour home. Not cool. I have been in very embarrassing situations where I had to go through drastic measures to crap away from the group of people I was with (i.e. jumping off a boat to get to the woods). That was a tad embarrassing. I was pretty much at an emotional low after that... The alternate was hang over the boat and poop, poop my pants (not in front of those people - they were business contacts), or hold it (which couldnt be done). Still, jumping off a boat in 60 degree weather (we werent swimming) fully clothed to get to the woods on the shore to crap was not cool at all....top that all off we were on our way through finger lakes to go out to eat at a restaurant.

I am not familiar w/ your kidney situation and how it relates to your UC however I can only say in my opinion I would hang in there for a bit to see what some of this new research is going to produce...it may be 10 more years but a small light at the end of the tunnel is enough glimmer for me to hold on for now.
Posted 5/30/2008 3:51 PM (GMT 0)
Good for you Beth, I've been doing well on Remicade for a while now, but surgery is always in the back of my mind and I'm pretty well settled on doing it when the Remicade stops working.
It seems this is the only way we can really take back control of our lives and I say more power to you!
James
Posted 5/30/2008 4:06 PM (GMT 0)
thanks everyone for your responses. I really appreciate it!! Surgery for me is a last resort but I am now viewing it as not an end but a possible beginning. There is just so much I want to do and accomplish and I am putting off additional school again.

I went to the jpouch.org site and from some of the posts there, it does seem that it may still not be over after the sugery, there are still complications and I need to play the odds as if all the negatives will happen so I can be mentally prepared if so, if I choose to do the sugery.

mbx5, I am so sorry you went through that!!! I can empathize, in the seventh grade I got my period all over my pants and the whole school knew, you can only imagine how cruel 6,7 and 8th graders can be at that time. I am still scarred from that. Luckily my best friends stuck with me and are still my best friends to this day!

I am terrified of crapping myself in public now, but I think I just need to realize that when I have to go, I have to go and not to try to hold it, like I did the other night, but the bathroom was next to the kitchen where we were all hanging out and it was going to be symphony of destruction. Which is less embarrasing than crapping yourself, so I guess I am going to get used to that real fast.
Posted 5/30/2008 4:12 PM (GMT 0)
I don't know... I always think how some great new medication or even a cure may be right around the corner, as in 5 or 10 years... But... That's 5 or 10 more years where it could get exponentially worse and even to the point where I might end up with cancer. And then what? Then I have to go through the surgery anyway AND have chemo. And to me, it seems like a much better idea to have the surgery when you're not in a severe flare or life threatening situation to reduce the risk of complications and speed up the healing process. And even if a new effective medication comes, even if Remicade were to take away the pain, it still adds all it's own risks and problems, and you still have UC no matter what.

I don't see surgery as giving up anymore. I see it as taking control over UC and getting rid of the problem completely. At 32, or even 22, ten more years is a lot of time to waste being sick. These are supposed to be the best years of our lives, right?? Because I know for me, so far they've been the worst...
Posted 5/30/2008 4:19 PM (GMT 0)
Just remember that www.jpouch.org is a site for getting help and like this site you usually see a lot more of the people having problems than those that are out living life. It should not be viewed as a source for your potential outcome.

Sue
Posted 5/30/2008 4:33 PM (GMT 0)
thanks Sue, I mean to say that having surgery might not be everything I dream it will be and I could still have issues.......Murphy's law pretty much applies to my life.

Also, EdieKristen, I agree don't want to get the to the point where it's so bad that I can't get surgery.

I think that I am kind of accepting sugery is a real possibility for me and I feel a lot better accepting that. I am just tired of that hopeless feeling I have had this past year. It was supposed to be the best year of my life, I had so much planned.........ah well, could always be worse, I don't want to tempt fate.
Posted 5/30/2008 4:37 PM (GMT 0)
I agree with Sue. Just think... There aren't any message boards for people who are happy and successful where everyone goes to talk about how great life is. Well, none that I've seen anyway! People look to internet message boards and support groups because they need just that- support- for one reason or another. Of course there are some people on these boards (like Sue) who are doing great and they stick around to let people know that things can be better. I've read that the success rate for the J-pouch is 95% and the most common reasons it doesn't work out is because a) they were misdiagnosed and actually have crohn's or b) they have other problems like obstructions/adhesions and the like. But overall they say the satisfaction rate is very high. I think even if the j-pouch doesn't work out the K-pouch/BCIR seems like a great alternative as opposed to going right to the permanent ileostomy.
Posted 5/30/2008 4:40 PM (GMT 0)

Beth75 said...
thanks Sue, I mean to say that having surgery might not be everything I dream it will be and I could still have issues.......Murphy's law pretty much applies to my life.

Yeah, I know what you mean. I have the same thoughts... When I think about surgery I hope that I will be one of the people that instantly feels great and everything goes well and I'm happy and going wonderful, but I worry that what if I end up one of the 5% of the unsuccessful ones. Well, I guess there's no way to plan for the future. Besides, thinking about doesn't mean you have to do it... But at least if you ever decide to or if you ever actually HAVE to, you'll be accepting of it and ready for it. It seems unplanned, emergency surgeries are the ones that don't go as well because you're so unhappy about it and not prepared.
Posted 5/30/2008 4:40 PM (GMT 0)
thanks Edie & Sue, I will look into that. I tend to get all riled up sometimes and then calm down. I don't really have any info yet, but am just begining.
Posted 5/30/2008 4:40 PM (GMT 0)
Cancer is something I have been dreading. Surgery is the only preventative measure for that right now unfortunately. However I am just not there yet for accepting surgery as my fix....I may be playing with fire - because my UC has never been fully controlled....but I just have a gut feeling (no pun intended).

I dont think there is a right or wrong answer at this point. Surgery will most likely go well and you will be cured of your UC...that is a huge step forward. If I get surgery with my luck murphys law will apply to me the day after surgery when the news announces a new cure for UC in a pill.
Posted 5/30/2008 4:43 PM (GMT 0)
lol mbx5! I can picture it, laying in recovery watching TV, big news flash, "Cure for UC now available without surgery!"
Posted 5/30/2008 4:51 PM (GMT 0)

Beth75 said...
lol mbx5! I can picture it, laying in recovery watching TV, big news flash, "Cure for UC now available without surgery!"

OMG I have thought the same thing!! "With my luck, I'll be watching TV or surfing the web while I'm recovering from surgery, feeling happy and then a breaking news story will come on saying they finally found the cure for IBD" Hahahah. That would REALLY suck. I don't think it's that close in the future, but yeah, sometimes I feel that would be just my luck.
Posted 5/30/2008 5:06 PM (GMT 0)
I think researching surgery and talking with your doc about it - maybe even a surgical consult - is a good idea. Knowledge is power and the more you know about surgery - the better you'll feel about it.

It's awful to feel so down about life and your health. At least with researching, you'll feel proactive!

Life isn't meant to be lived within 10ft of a toilet. Best of luck to you!
Posted 5/30/2008 6:10 PM (GMT 0)
When my mother had her surgery, I think it was so hard on her because she was so sick when she had it. I'll never forget loading her in the car and hauling her to Rochester.

It's been a relatively wonderful trade-off for her. She does have several bowel movements a day, but no meds anymore.

I know you've been really suffering with this, Beth, and then your kidney disease on top. I agree that you shouldn't look at it as the end of something but a new beginning -- including getting your life back!

Hang in there.

Mitz
Posted 5/30/2008 8:18 PM (GMT 0)

Oh Beth, all I can say is I feel your pain! I have had surgery scheduled 2 times in the past year & cancelled it both times...I did all the pre-ops, consults, you-name-it....but when push came to shove I just could not go thru with it. I see you have been on jpouch.org- good call! I also suggest you visit the ostomy forum on HealingWell- those folks are an absolutely wonderful source of info & support. It's a horrible decision to have to make- after going back & forth between wildly pro-surgery & totally anti-surgery, the only thing that changed in the end was my mindset. My disease has stayed the same, pretty much, over the past year. I finally said to myself "Well, I can deal with the frequency, the occasional accidents, the utter nusiance of it all". I told my GI (& potential surgeon) that my quality of life was just not that bad to justify such an extreme measure. This is after every GI I've ever spoken with has recommended surgery! And both doctors were totally understanding. For me, I will not ever be able to voluntarily undergo a proctocolectomy- talk to me the next time I'm in the hospital, getting pumped full of IV 'roids, then I'll be singing a different tune. But until that day ever comes (& I sincerely hope it doesn't!), I'm just gonna muddle along with what's currently available in the way of drugs. Do some research, talk to a surgeon, see how you feel..... I do believe that gaining knowledge about surgical interventions takes away a lot of the fear & mystery. It's empowering, really, to know what exactly you can do to get out of this UC hell. Good luck!

Posted 5/30/2008 8:28 PM (GMT 0)

Beth - Two of my very good friends had UC and elected the surgery when it all became too much.  Both have j-pouches.  One had the surgeries before I met her; the other after.  Both elected the surgeries once the 5-ASA meds stopped working for them, and they became steroid-dependent.

Neither has one single regret.  Not a one.  Their lives have returned to complete normalcy, and they couldn't be happier.  They both have fulfilling careers (one as a high school Spanish teacher; one as a lawyer).  Both live completely med-free.  One, in fact, is currently expecting her first child.

Based on their experiences, I know I will opt for the surgery if and when my disease worsens and the Asacol doesn't work anymore.  I don't want to torture myself with continual steroid use or the risks of the heavier medications. 

I say good for you.  You are young and have your entire life ahead of you.  You've mentioned wanting to start a family.  I wish for all of that for you.  Do what you think is best to help yourself get there.

Posted 5/30/2008 9:52 PM (GMT 0)
To me, it's more amazing to see the lengths people will go to and the suffering they will endure to avoid surgery. I know it's drastic and permanent, but if you're wearing adult diapers, regularly having accidents, stuck on prednisone, on 100 different meds to no avail, and just not living life at all... Why not just go for surgery?
Posted 5/30/2008 10:54 PM (GMT 0)
i think it is very common to worry that a cure will be found right after you have surgery. Iwas convinced that i would wake up from surgery and Brian Williams would be on tv saying there was a cure for UC.
Logically though, i knew that was very unlikely.
ComedyDork-you dont need to feel guilty for considering surgery after a year, a year with UC is alot of life missed, andpain felt.
I think that if you have gotten to the point where you are unhappy with your life with UC, then the best thing to do is to try surgery, it is extreme, and permanent, but it is a cure. I also don't think that surgeyr should be looked at as "giving up" i think it should be looked at as taking back control. If you opt for a j-pouch, you will have a temp ileo, and you may find that you love having that, and not want to have the take down, or you may decide to go on to the j-pouch, either way you won't have UC anymore, and that's the best thing of all!
Posted 5/30/2008 11:32 PM (GMT 0)
Hmm... I wonder how much money I would save on TP and wet wipes having an ileo as opposed to colitis? tongue
Posted 5/31/2008 1:15 AM (GMT 0)
A TON!!!! lol, really though, i have saved alot of money on TP, cause now i can buy the great big box at sam's that is like 48 rolls for 15 dollars.
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