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Ulcerative Colitis
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Posted 11/1/2015 11:46 PM (GMT 0)
I'm dreading the drive considering how active my disease is right now. My parents are gonna drive me which is good. I'll be meeting with the surgeon to have a consultation, I'm mentally ready for surgery and my blood work isn't bad, so physically I think I'm ready too. I've tried just about every drug out there, and I don't want to attempt anymore. If the surgeon knows this, does he have a right to say "I don't wanna perform surgery on you". Ultimately it's my body and my decision right? I'm just nervous that I'm gonna be forced into some new medication attempt and go home without a surgery date planned and just another month or so on drugs. Also my fatigue and symptoms are bad enough where I think they should keep me there at the hospital, do you think that's an option? It's going on half a year out of work, housebound, and with my disease active. I'm just hoping I see some sort of light after Tuesday
Posted 11/2/2015 12:07 AM (GMT 0)
Wishing you the best appointment possible. I think you have a right to the surgery if that is what you want. I was thinking of going there for a second opinion, it is a 3 hour drive for me.
Hope all goes well!
Posted 11/2/2015 12:09 AM (GMT 0)

momto2boys said...
Wishing you the best appointment possible. I think you have a right to the surgery if that is what you want. I was thinking of going there for a second opinion, it is a 3 hour drive for me.
Hope all goes well!

Thank you, and yes my drive will be closer to four hours
Posted 11/2/2015 12:11 AM (GMT 0)

You-See said...
If the surgeon knows this, does he have a right to say "I don't wanna perform surgery on you". Ultimately it's my body and my decision right? I'm just nervous that I'm gonna be forced into some new medication attempt and go home without a surgery date planned and just another month or so on drugs.

No one can force you try another medication if you don't want to. I was in your shoes where I didn't want to continue the drugs that didn't work and I told my surgeon that. If you're a candidate for surgery and you're ready for it then there's no reason you'd be turned down. When I went for my surgery consult they scheduled me that day and I only had a 10 day wait which was great because I didn't have too much time to dwell on it. Good luck!
Posted 11/2/2015 12:12 AM (GMT 0)
Any good doctor will explain the risks and benefits of surgery, but YOU either consent or not. The decision is yours and no one else's.

It' good that your parents will be driving you. Write your questions down and if you need more time to process do so.

Good luck!
Posted 11/2/2015 12:18 AM (GMT 0)

ByeByeUC said...

You-See said...
If the surgeon knows this, does he have a right to say "I don't wanna perform surgery on you". Ultimately it's my body and my decision right? I'm just nervous that I'm gonna be forced into some new medication attempt and go home without a surgery date planned and just another month or so on drugs.

No one can force you try another medication if you don't want to. I was in your shoes where I didn't want to continue the drugs that didn't work and I told my surgeon that. If you're a candidate for surgery and you're ready for it then there's no reason you'd be turned down. When I went for my surgery consult they scheduled me that day and I only had a 10 day wait which was great because I didn't have too much time to dwell on it. Good luck!

Thanks for the input, and did you go to Cleveland? Also how is your body tolerating the j-pouch, was it the right decision?
Posted 11/2/2015 1:08 AM (GMT 0)
I know someone whose surgeon had them go on remicade for a bit so that surgery was an option. The surgeon didn't feel comfortable operating on such a terrible colon. The patient opted to have surgery cuz they wanted out.
Posted 11/2/2015 1:17 AM (GMT 0)
I don't feel like my surgeon even asked very much about my past medication use at my consult. I had tried just about everything, and I know it was in my record and he had seen, but it wasn't discussed. He was mostly focused on making me feel comfortable, answering my questions and letting me know that there was hope beyond taking all these medications for the rest of my life. I know, right now, it seems like a huge undertaking but when you add it all up, it's a few months from start to finish. Your life doesn't stop while you're healing. I've been pretty active with my ileostomy.

Byebye has been very vocal on HW about her success. She loves her pouch. She sister also had very successful surgery for UC. To be honest, I've seen quite a few people have surgery, either for jpouch or perm ileo and more leave this site and don't return because they are out living life, no longer worried about what's next.

Dikid, he's already on remicade and hasn't had much improvement I believe.

Good luck! It's liberating to know you can live life without worrying about flaring up in the future.
Posted 11/2/2015 1:23 AM (GMT 0)
Yeah I'm on remicade now, four doses and the last two were double dosed. I had my last infusion on October 5th. Remicade hasn't done anything for me. My blood work shows an increase in inflammation actually. 0-9 being normal range, mine is 55.
Posted 11/2/2015 1:29 AM (GMT 0)
i met with maybe 6 surgeons during my flares and they never mentioned medications. this was even during my first flare when i hadn't even been on anything yet- even prednisone. they all wanted me to schedule surgery as soon as possible. that's their thing- that's how they make money!! i don't see them turning you down at all if you are for it.
Posted 11/2/2015 1:42 AM (GMT 0)

You-See said...

ByeByeUC said...

You-See said...
If the surgeon knows this, does he have a right to say "I don't wanna perform surgery on you". Ultimately it's my body and my decision right? I'm just nervous that I'm gonna be forced into some new medication attempt and go home without a surgery date planned and just another month or so on drugs.

No one can force you try another medication if you don't want to. I was in your shoes where I didn't want to continue the drugs that didn't work and I told my surgeon that. If you're a candidate for surgery and you're ready for it then there's no reason you'd be turned down. When I went for my surgery consult they scheduled me that day and I only had a 10 day wait which was great because I didn't have too much time to dwell on it. Good luck!

Thanks for the input, and did you go to Cleveland? Also how is your body tolerating the j-pouch, was it the right decision?

No, I had my surgeries in Philadelphia 5 years ago. It was absolutely the right decision for me. I use the bathroom about 4x a day, no urgency, no pain, no blood, I eat what I like and no meds. I also have two family members with long time j pouches and they have gotten on with their lives very well too. Ther surgeries were tough but worth it.
Posted 11/2/2015 5:21 AM (GMT 0)
I see I was not clear( recurring theme)

some surgeons will still want you on meds until surgery or even to upp meds to help with the surgery ( makes healing easier)

I'm actually thinking of surgery myself if I flare badly again because I don't want to ever take steroids again. They made me nuts and I am still suffering from them.
( although I am not quite out of my flare just yet)
Posted 11/2/2015 6:00 AM (GMT 0)
I didn't have to continue meds. They weren't doing anything for me so why bother?/ I am thankful to be out of the cycle of steroids, try to stay in remission, back on steroids. It's the best thing for me. I refused steroids.
Posted 11/2/2015 6:03 AM (GMT 0)
I'm glad you were able to be off pred. I had a nightmare about going back to the hospital and then starting iv steroids and I had to taper.
If we took a survey I bet we wouldn't find too many 20 year olds waking up in cold sweat about prednisone.
Lol
Posted 11/2/2015 6:45 PM (GMT 0)
Unfortunately, surgeons can turn you down. I've literally begged for surgery and been turned down because I haven't failed on enough of the medications yet, and that was after over a year of active flare symptoms.

But ultimately, if you want surgery and your diagnostics support the need for it, someone will eventually consent to do it. My experience with surgeons has been that they're always more eager to cut than not cut.
Posted 11/3/2015 12:47 AM (GMT 0)
Hoping to leave the clinic tomorrow with a surgery appt date. Would I be traveling about four hours away just to talk to the surgeon for a bit and then leave? Hopefully it's more productive than that, otherwise would seem like a waste of a drive.
Posted 11/3/2015 12:55 AM (GMT 0)
I scheduled surgery on the day of my appointment. I loved the surgeon, he didn't rush me at all. I met witht he scheduler who gave me all my pre-op instructions and gave me samples of antibacterial soap i needed the night before. She gave me my script for a colon prep too. I freaked out for the next few days wondering if i was doing the right thing, then after that it was full speed ahead. I wanted to get on with my life and i knew my life would improve without a sick colon.

Oh, he also looked at my butt turn I forgot about that part...
Posted 11/3/2015 1:00 AM (GMT 0)

notsosicklygirl said...
I scheduled surgery on the day of my appointment. I loved the surgeon, he didn't rush me at all. I met witht he scheduler who gave me all my pre-op instructions and gave me samples of antibacterial soap i needed the night before. She gave me my script for a colon prep too. I freaked out for the next few days wondering if i was doing the right thing, then after that it was full speed ahead. I wanted to get on with my life and i knew my life would improve without a sick colon.

Oh, he also looked at my butt turn I forgot about that part...

Thanks for the info! And I just recently got hemorrhoids, external, from straining so much with my urgencies. He will be the first one to see them and clarify that they are in fact hemorrhoids. Would this slow up the process of surgery? Never had them before.
Posted 11/3/2015 1:16 AM (GMT 0)
Well, when he looked at my butt, he mentioned that I had a hemmie. I was shocked that someone finally mentioned it. Multiple scopes and sig scopes and never did anyone address this massive prolapsed hemorrhoid. One quick peek and he said "you have a small hemorrhoid". I was like, "small?". That thing felt like a grape. He didn't say anything about treating it and I forgot to ask. A few weeks later, I emailed his office to find out whether something could be done about the hemmie at the same time as surgery. The doctor said leave it alone. After surgery, it went away. It was there for so long, seriously, chronic. I definitely didn't expect it to go away entirely, but I guess you don't poop, you don't strain, it heals :)
Posted 11/3/2015 1:22 AM (GMT 0)

notsosicklygirl said...
Well, when he looked at my butt, he mentioned that I had a hemmie. I was shocked that someone finally mentioned it. Multiple scopes and sig scopes and never did anyone address this massive prolapsed hemorrhoid. One quick peek and he said "you have a small hemorrhoid". I was like, "small?". That thing felt like a grape. He didn't say anything about treating it and I forgot to ask. A few weeks later, I emailed his office to find out whether something could be done about the hemmie at the same time as surgery. The doctor said leave it alone. After surgery, it went away. It was there for so long, seriously, chronic. I definitely didn't expect it to go away entirely, but I guess you don't poop, you don't strain, it heals :)

Ah makes sense, thanks for sharing NSSG. If I could maybe ask you a couple more questions about the surgery? Sorry!

How did you feel once you woke up from the surgery? Pain? Any Better?

How many days after until the pain from surgery goes away? And were you able to eat that day or does it take a little bit to regain appetite. Also, do you feel your bag filling up throughout the day? Or you don't notice that part of it. Thank you!!
Posted 11/3/2015 2:10 AM (GMT 0)
I am having 3 step surgery so each step was different and the way the stoma acts is different.

I was able to eat the day of each surgery. My surgeon gave me no restrictions on food, seems like there is a lot of disagreement on this, but I ate whatever i wanted and I was fine. My appetite was really low so I didn't desire to eat very much... When I got home, my stoma nurse wanted me to eat a very restricted diet but I guess it was unnecessary in my case because I never paid attention to what I was eating and I've been okay.

When you wake up, you feel pretty bad. I am not really the best person to ask because I have bad luck with narcotics, they make me sick and itchy. Between that and the pain of the incision, I wasn't very happy. I also had a drain that was uncomfortable. I was ready to go home after 3 days. After getting home, the pain was pretty minimal. Since I can't take pain meds, I tried to stop them 100% right when I left the hospital. THey actually disconnected my pain pump really quickly because they said I wasn't using it.

The first 2 nights are really tough because you're exhausted and you can't sleep. People are in and out of your room at least 2x an hour it seems like. I also got my catheter out the same day of surgery both steps I believe, so I had to get tot he toilet and i had to pee ALL the time. I guess the saline drip was causing this. Literally every half hour i would have to buzz a nurse. I am sure they loved me. Getting up and down was the hardest part.

Once I was at home, I was able to get rest and that enabled quick healing. I didn't take pain pills and things were pretty easy. I had pain around the stoma for a while - especially when I tucked the pouch into my pants - I guess it would pull down and that pulling hurt...

After step 1, I was just so confused about the stoma and what was going on but I had an end ileo. That was great. It was lower down in the GI tract and it absorbed some water, I didn't ever have leaks and I would get 7 days wear time per wafer. It was really easy. I didn't feel it filling but you can touch your pouch through your clothes and get a feel for whether it's full or if there is gas... My end was also pretty quiet.

Now since step 2, I have a loop. THis is higher up and it fills a lot faster. I knew how to manage it right away which was great. I think this is noisier. Luckily I could use a lot of the same supplies that I had from surgery #1. I just feel the pouch. I empty a lot more often with the loop. Actually i empty whenever i know I am not going to be near a toilet for a while. This can fill fast. Now, waiting for take down.

Step 2 has been harder for me to recover from because of dehydration.
Posted 11/3/2015 3:18 AM (GMT 0)

notsosicklygirl said...
I am having 3 step surgery so each step was different and the way the stoma acts is different.

I was able to eat the day of each surgery. My surgeon gave me no restrictions on food, seems like there is a lot of disagreement on this, but I ate whatever i wanted and I was fine. My appetite was really low so I didn't desire to eat very much... When I got home, my stoma nurse wanted me to eat a very restricted diet but I guess it was unnecessary in my case because I never paid attention to what I was eating and I've been okay.

When you wake up, you feel pretty bad. I am not really the best person to ask because I have bad luck with narcotics, they make me sick and itchy. Between that and the pain of the incision, I wasn't very happy. I also had a drain that was uncomfortable. I was ready to go home after 3 days. After getting home, the pain was pretty minimal. Since I can't take pain meds, I tried to stop them 100% right when I left the hospital. THey actually disconnected my pain pump really quickly because they said I wasn't using it.

The first 2 nights are really tough because you're exhausted and you can't sleep. People are in and out of your room at least 2x an hour it seems like. I also got my catheter out the same day of surgery both steps I believe, so I had to get tot he toilet and i had to pee ALL the time. I guess the saline drip was causing this. Literally every half hour i would have to buzz a nurse. I am sure they loved me. Getting up and down was the hardest part.

Once I was at home, I was able to get rest and that enabled quick healing. I didn't take pain pills and things were pretty easy. I had pain around the stoma for a while - especially when I tucked the pouch into my pants - I guess it would pull down and that pulling hurt...

After step 1, I was just so confused about the stoma and what was going on but I had an end ileo. That was great. It was lower down in the GI tract and it absorbed some water, I didn't ever have leaks and I would get 7 days wear time per wafer. It was really easy. I didn't feel it filling but you can touch your pouch through your clothes and get a feel for whether it's full or if there is gas... My end was also pretty quiet.

Now since step 2, I have a loop. THis is higher up and it fills a lot faster. I knew how to manage it right away which was great. I think this is noisier. Luckily I could use a lot of the same supplies that I had from surgery #1. I just feel the pouch. I empty a lot more often with the loop. Actually i empty whenever i know I am not going to be near a toilet for a while. This can fill fast. Now, waiting for take down.

Step 2 has been harder for me to recover from because of dehydration.

Thank you so much for the time and details you put into this reply. Very informative. I will be posting an update tomorrow on what the surgeon says.
Posted 11/3/2015 11:51 AM (GMT 0)
Good luck today!
Posted 11/3/2015 3:50 PM (GMT 0)
Good luck! I am looking forward to hearing your update.
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