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Hi all,

Wanted to introduce myself and get some advice... I'm a 26 year old woman, diagnosed with UC pancolitis in May 2012. Since then I've been through two courses of prednisone (still on the second course), hospitalization, Cimzia, Remicade, Methotrexate, Cipro, Flagyl, Asacol, Pentasa, Apriso, Xifaxan, 6MP, Butyrate, Cortenemas, Rowasa, Canasa, Proctofoam/Cortifoam, SCD, paleo, probiotics... you name it I've tried it (except Humira Smiler)! My first course of prednisone got me into a remission-ish state (1-2 soft painful BMs per day) but only while I stayed at 30 mg or higher. At my worst, when I was on no prednisone I was having 30+ excruciating, bloody BMs with giant chunks of mucus/tissue.

Anyway, I've been just barely 'getting by' on pred, antibiotics, remicade, and methotrexate ever since leaving the hospital, but can't get off of the antibiotics, even to reduce the dose slightly, without my symptoms worsening. I'm not able to work or even live independently. I feel like my body is falling apart from the UC and from the side effects of steroids, antibiotics, Remicade, and MTX. Before my diagnosis I was very active and healthy, but now I feel like I have the body of an elderly person. I'm only 26 and I know there's no way I could thrive for another 50 or 60 years with all of these medications.

I saw my GI yesterday, who is VERY aggressive about medical management (obviously from my list of meds above), but without my even bringing it up she said she thinks it is time for surgery, and I agreed. She says that I have gone "above and beyond" to try to save my colon, and that surgery will give me my life back. I'm not naive -- I've read stories here and elsewhere and I know that the surgeries (three steps for me) will be difficult and that there are many risks of complications in the short and long term, but after all I've been through I feel confident now that it is right for me.

I'd love any support or advice as I prepare to say goodbye to my large intestine next week. What do you wish you had known before your first step? Any tips for stuff to bring to the hospital? I asked my surgeon if there's anything I can do before the surgery to set myself up for success (I thought maybe exercising?... for me that's a slow walk around the block...) and his attitude was pretty much "Well if there were anything you could do, then you wouldn't really need the surgery." I am already trying to eat as much protein as possible and am going to taper my prednisone. I figure I am flaring anyway so it doesn't matter if I'm slightly more uncomfortable for a few days.

Thanks so much!!

Liz

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CTBarristerCTBarristerMember
Liz,

I see you are from New York, are you having the surgery in Mount Sinai Medical Center?

The only real advice I can give to you relates to the aftermath of step 1: you need to walk around as much as possible, and use the least amount of pain meds necessary for you to feel comfortable. Doing those 2 things will reduce the chances of a postoperative ileus.

I was on 60 mg Prednisone before surgery and my recollection is they started tapering AFTER surgery, slowly. I received Prednisone by IV drip for over a week. You should talk to your Doctor about this because you need to be really careful with the Prednisone taper before and after surgery. I had some very mild withdrawal symptoms (constant dull achy headache).

One piece of good news is that there is a very good to excellent chance you will never take Prednisone again after the postsurgical taper. I had my surgery in 1992, and have never taken it since. I do have chronic pouchitis, treatable with antibiotics, but it is certainly nothing like my final days with UC in which I was suffering symptoms much like what you have described. I was 29 when I had my surgery. I am very happy that I did it when I did and my quality of life since then has been excellent despite the chronic but treatable pouchitis.
CTBarrister
CTBarristerCTBarristerMember
quote:
I like to think I am a tough cookie after everything that's happened this year but the NG tube scares me a lot!


Hopefully your toughness will not be tested. I had postoperative ileus/NG tube and that is the only reason I mentioned it. The good news is that even if it happens, you will survive it, but it sucks big time.

New York Hospital/Cornell is also a good hospital and I think you are referring to Dr. Milsom who is also one of the top colorectal surgeons in NYC. In any event, you will be in good hands at that facility.

Keep us posted on your progress and I wish you the best of luck. This is the beginning of a new chapter in your life....you join the ranks of the rest of us without colons. Hopefully it will be a great new chapter like it has been for me.
CTBarrister
mgmt10mgmt10Member
It certainly sounds like its time for surgery. That's some list of meds. I was on a similar drug routine that barely did anything. I didnt try Humira either...I was so fed up with the disease at that point. At one point you just have to face the music.

One thing I would say is be prepared for the unexpected. I had some complications (abscess/infection) after my first step that I just didn't expect and it really threw me for a loop mentally. It all was fine in the end but I just thought I would breeze through it and everything would be roses. Not so. Not trying to scare you....just keeping it real. Smiler

As far bringing stuff to the hosptial I would say t0 bring stuff to keep yourself busy. Laptop or iPad ... Whatever you have. Are you having this done in 2 or 3 steps? My first step was the proctocolectomy and the j pouch creation at the same time so recovery from that was just really rough for me. Step 2, takedown, was a breeze for me thank goodness. I paid my dues with the first step!
mgmt10
crick05crick05Member
Hi Pluot
I have to say that the first thing I thought of when I read your post was what a great attitude you have and that you sound like you are in a great place. I am a 40 year old female that went through a very similar situation to yours....only I waited 4 years to come to the conclusion that surgery was the way to go and by the time I decided I was in an emergency situation and the decision was taken out of my hands anyway. By the time I had my first surgery a year ago I was down to 105 pounds at 5'9" and my hemoglobin was 58(normal is 130ish) so I was not in great shape.
The one thing I can say is that I woke up after the first surgery and looked at my husband and said "the pain is gone!" For me it was so worth it. Of course there was pain from the surgery but it was manageable and all my UC symptoms were gone. I only had my ileostomy for 6 months and had a couple of bumps along the way but overall it was pretty good so that by the time I had the takedown I was back up to 120lbs and feeling a lot better. In both surgeries I did not have an NG tube so I can not help with that but based on your amazing attitude you will be fine.
As for things you should bring to the hospital, I thought of things that would make me more comfortable. I brought my own slippers with a rubber bottom so no slipping, my own toilet paper, hand cream and face cream because it is so dry in there, earplugs and an eye mask for sleeping(the nurses loved my eye mask and everyone in the room got their significant others to get them one, who knew something from the dollar store would be so popular!), I also got my husband to bring me some of my own food after a couple of days when I was allowed to eat solids, toiletries (deodorant etc), my kindle and I also bought a comfy pillow because I hate the hard hospital ones!! That's all I can think of right now.
I think the most important thing is having a positive attitude and you have that down pat.
Good luck with everything.
Crick
crick05
Scott FScott FMember
Best of luck, Liz! I had my surgery 10 years ago and have never regretted it. I'd echo CTBarrister's caution about tapering the prednisone prematurely. There's no good reason to taper the prednisone preoperatively, and a lot of reasons not to. You need to be as healthy as you can manage, and prednisone helps you with that, in its own awful way. Steroid-dependent folks are given high "stress doses" of steroids when having surgery, so you'll be tapering from a higher dose anyway. Walking around the block is a fine idea.
Scott F
A Av8erchicMember
I had my colectomy in November. Everything that everyone is suggesting is great-but one other thing I'd consider bringing is a small fan. I was SO thankful I had it-I think it was due to all of the meds I was on, but I could not get cooled off. I was sleeping under a sheet with the fan on high while whoever was staying with me that night was essentially shivering from how cold the room was. I also took several pairs of PJs and comfy socks, which were wonderful to have starting the second or third day once I could get out of the hospital gown.

I know that there are a lot of people that have issues with the surgery-but keep in mind it depends on the person. I was in for 6 days, but only had a minor problem (muscle relaxers made me vomit which caused me to be backed off from any food/liquids). Other than that, recovery was easier than I expected.

Another thing you might be prepared for is that the ostomy is an adjustment. I thought I was well prepared-had been given a heads up about a year before that the surgery could happen-so I did a lot of research and read lots of blogs, etc. about having the ostomy. I still had a hard time accepting it, even as temporary, after the surgery. It was hard for me to imagine that no one could see it or smell it, but I promise no one can. Smiler

I hope everything goes well for you, although I'm sure it will. Good luck! Smiler
A
P PluotMember
Thank you so much everyone for all of your kind words!

"The one thing I can say is that I woke up after the first surgery and looked at my husband and said "the pain is gone!"" I love this. My GI and the surgeon both told me about people saying this in recovery... Have I mentioned that I am so excited and scared and excited? It's a scare-excitement sandwich.

Marianne, I'm pretty sure I'll be having three steps because I've been on fairly high doses of prednisone for two months now as well as a lot of Remicade (a total of 25 mg/kg in the past two months). I've heard the end ileo is a little easier to manage than the loop anyway, so I'm not too upset about having to do three steps.

Are we allowed to share links here? I am going to try to keep a blog describing my experience but I don't want to break any rules...
P
B beckysmomMember
My daughter just left Weill-Cornell. Bring your laptop or other device. We forgot the laptop this time because it was an emergency and even so they have this hook up where you can use their keyboard and internet on the TV but it's very slow to maneuver, but better than nothing. If you are on the 14th floor colon rectal, depending on how crowded the hospital is, all the rooms are private and you can comfortably have someone stay with you. For the first 3 days this admission, my daughter was on the 8th surgical floor and that has improved a lot since she was there in '08, but not private rooms, but I still stayed, slept in 2 chairs put together. The hospital has been really more crowded than usual since the hurricane and the closing of downtown hospitals. After 3 days she was moved to the 14th floor when a bed became available.

She prefers flipflops or slippers, easy on and off. They give you a kit with a sleep mask, ear plugs and other good stuff you can use in it. The plastic covered mattress and pillows make her sweat a lot so she uses double sheets over the mattress and double pillow cases, or bring your own pillow. Books, magazines, crosswords, etc.

Best to you.
B
CTBarristerCTBarristerMember
Liz-

I think you are allowed to post a link to a blog, but not to use the board as a blog. I think poster "bootstrap" has done the same thing and she is about a month or so ahead of you as she just had her surgery in December. She had a bunch of complications so you may not want to read her blog too closely, otherwise it could ratchet up the "scared" part of that scared/excited cocktail.
CTBarrister
U UCWarrior2010Member
Hi Liz,

Regarding the pred taper, I am on 20MG of pred and was thinking it would great to taper to a lower dose. But, my surgeon told me that from an operative point of view it doesn't really matter if I am on 20MGs or 10 for a week. It's more important that my symptoms don't get worse and I don't loose too much fluids, etc. Also, he told me to exercise as much as I can. That has been tough though because I haven't been feeling the greatest lately. Five more days to go for me. Like you, I am excited but a bit nervous as well. And, i am really dreading the NG tube. I hope I don't get it. By the way, everyone, how uncomfortable is the catheter? And, getting it pulled out?
U
stephalynndstephalynndMember
Hi. I had uc for 12 or so years before i almost died from bleeding to death out my bum. Code blue....wake up....no colon. I was so so sick, on methotrexate, and pred for months... they had to taper me too but did it through the iv all while i was in hospital after the surgery. They only did the total colectomy since it was emergency rather than planned j pouch.
It was open surgery and the only complication i had was on the day i was discharged my incision opened up to a gaping hole below my belly button. They stuck the vac machine on me and sent me home. Had home nurse care for 4weeks to manage the vac machine.
Other than that the ileostomy worked fine. It got easier every day. I felt great and by the time i had my 2nd step i thought the bag was the most convenient thing ever and wouldn't have minded sticking with it longer.
2nd step went great. Loop ileo was not bad at all once i switched to a convex wafer. Easy.
3rd step went great except i had post op ileous and suffered with bad gas cramps until day 4 when it all started working. No ng tube! Having ileous does not guarantee an ng tube so don't panic.
I am 1 month out from takedown and i already eat everything with no issues. Pizza, mcdonalds, Mexican, nachos, jalepenos, salsa, chili, fruits, veg, salad, nuts. Everything.
My pouch seems to be perfect.
I've had NO butt burn, no urgency, it's thick output, i only go 3-6 times a day. No issues at night. Nothing. It's awesome. And compared to the bleeding and excruciating pain i went thru with my uc, this fantastic. Even if i go a bit more it's still no big deal.
There are a large majority of pouchers who function perfectly. You just don't read about because they are out living life and not on a support forum.
So you may have a great experience with all of this.
Good luck. You're doing the right thing. If your colon is a hunk o'junk...get rid of it! Best to do it before the choice is taken away from you.
stephalynnd
CTBarristerCTBarristerMember
quote:
By the way, everyone, how uncomfortable is the catheter? And, getting it pulled out?


The urinary catheter is inserted while you are under anesthesia and pulled out usually after about 4 days is my recollection. When mine was pulled out (I was at Mount Sinai Medical Center, a teaching hospital) some very cute young Medical student came into my room and asked for my permission to remove it. The way she asked me for permission suggested to me that she thought I might be embarrassed having a female as opposed to a male remove the catheter. I looked at her straight in the eyes and told her the only thing I needed to know before granting permission was her experience level removing catheters, since she was a medical student. She smiled and said, "oh, I have done hundreds!!!!" I then granted permission.

It takes a few seconds and when the tube passes out there is a burning sensation in the urethra within your penis that lasts for about 2 seconds. I would rate it as a minor nuisance as compared to insertion of the NG tube.

While the catheter is inserted, it is not that uncomfortable. You notice it is there, but it is nothing and it is certainly not anything like the NG tube. And don't worry, there is no chance you will get an erection while the catheter is inserted, it will be the very last thing on your mind.
CTBarrister
Last edited by CTBarrister
CTBarristerCTBarristerMember
quote:
And, i am really dreading the NG tube. I hope I don't get it.


Don't think about it. The only thing you can control is the amount of pain meds you take and the amount of walking you do after surgery, as I mentioned to Liz earlier in the thread. Other than that it is out of your hands. I would not worry about it because chances are it will not happen, but if it does you, like me, will survive it. I am actually glad it happened to me so that I had the experience, although I certainly did not think that way at the time.
CTBarrister
ElmerFuddElmerFuddMember
Liz,

I too was thinking about your meds and your eventual prednisone taper. If it were me, I wouldn't bother. Sounds like things are in poor shape in there, and dropping your pred could even make it worse instead of better for surgery at this point.

I really hope your surgeon is taking a 3-step approach to the surgery. The first should be relatively straightforward - to get the colon out. Then you will have time to wean off your prednisone. Hopefully the lingering rectal tissue won't cause too much issue for you - mine did a bit, but not enough for my surgeon or I to stay or go back on prednisone. Although I think from what her associate said, he would have kept me on it - my rectum was in bad shape after the second surgery when they made my pouch and took it out. Some surgeons are more opinionated about prednisone prior to surgery than others.

I will give you encouragement - I had my surgery 5 1/2 years ago and am loving life. My j-pouch is wonderful - something my surgeon proclaims annually when she sees it Smiler But at the same time, realize how sick you are - even if you don't feel like you are. Recovery and the whole surgical process will be difficult - but totally do-able. Check in here often with questions or even just to vent.

Steve
ElmerFudd
P PluotMember
quote:
Hopefully the lingering rectal tissue won't cause too much issue for you - mine did a bit, but not enough for my surgeon or I to stay or go back on prednisone.


Thanks for your kind words Steve. This is something I am really curious about. The surgeons I spoke to all said that even though the rectum remains, having the rest of the colon removed quiets down the inflammation and the rectum won't be a problem for me anymore. I've been having quite a bit of trouble with rectal spasming recently and now I'm kind of concerned that I'll be struggling with it post-surgery... Any thoughts? I do get a reasonable amount of relief from proctofoam, is that something that would/could be used after step one surgery if I still have rectal pain/spasm?

I'm hearing everyone's advice regarding the prednisone loud and clear and holding off on tapering. It was my GI, not the surgeon, who suggested continuing the steroid taper, so I'm comfortable disregarding that for now.
P
Txgal58Txgal58Member
Sounds like you are off to a great start with your attitude! Some things I was able to do that I found helpful were:
1. Interviewed and selected my surgeon and anesthesiologist. I realize everyone may not have the opportunity to do that but I had so much confidence going into this major surgery!

2. Read up on how the procedure is done. That was kind of scary but you need to understand exactly what the Dr. is going to do.

3. Try to have someone with you during your stay. When you need meds or there is testing that may need to be done, you may not be able or comfortable enough to ask questions or speak for yourself.

4. Definitely bring a tablet, iPad or laptop to occupy your time! I love trashy magazines like the Enquirer!

5. Expect the unexpected. Unfortunately I had several complications and held a few "pity parties"! Some of that's okay but nothing is textbook!

6. Recovery isn't laying in bed all day! Wink Some of it will be uncomfortable and it will take time. You will need plenty of rest though!

Best of luck on your surgery and recovery!
Txgal58
kathy smithkathy smithMember
quote:
The surgeons I spoke to all said that even though the rectum remains, having the rest of the colon removed quiets down the inflammation and the rectum won't be a problem for me anymore. I've been having quite a bit of trouble with rectal spasming recently and now I'm kind of concerned that I'll be struggling with it post-surgery... Any thoughts? I do get a reasonable amount of relief from proctofoam, is that something that would/could be used after step one surgery if I still have rectal pain/spasm?
I had a 3-step procedure and had UC in the retained rectum. I was put on Protofoam which didn't do much. The very good news is that that all went away once the rectum was removed so was that pain in the butt. There is a slight possibility that you might experience cuffitis after takedown but it seems that for most people that's fairly easily taken care of. [And hopefully you won't experience it.]

Good for you for scheduling surgery as soon as you made the decision - much less time to dwell on things. Some people have noticed that their colon starts behaving very well once that decision is made. It's trying to fool you into thinking it will continue to behave. It's such a liar. Divorce is good.

One piece of advice in addition to what's already been posted - cut those toenails before surgery. You won't be bending over for a while. Or better yet, go get a mani and pedi. Pamper yourself.

BTW - your blog is awesome. Very well-writen and extremely helpful.

kathy Big Grin
kathy smith
P PluotMember
Great news! My surgery has been scheduled for Wednesday! I'll be going in tomorrow morning for pre-op stuff and then all systems are go!

Gotta say I am not looking forward to the clear liquid diet tomorrow as usually nights are the worst for me and breakfast is what settles things down, but I know this is just one last hurdle... before all the new hurdles begin...
P
CTBarristerCTBarristerMember
They will probably give you a sleeping pill or sedative tomorrow night so you can sleep. They did with me. I cannot recall what it was but I slept well that last night with my colon.

Good luck Liz. I will be thinking of you Wednesday. I wonder how long a step 1 of 3 takes as far as time in the OR under anesthesia? I think I was told my step 1 of 2 was a 5 hour long surgery, but I could be wrong. I can still remember waking up in ICU and my surgeon coming to see me, and my parents.
CTBarrister
Last edited by CTBarrister
P PluotMember
Does it count as my colon trying to trick me if the bowel prep ISN'T WORKING? I had a ton of pain and the runs for most of today, but ever since I popped my first Dulcolax a few hours ago, I haven't had a bowel movement... Chugging the Miralax now... I'm sure it will hit me soon but right now I am pretty confused!

Reporting for surgery tomorrow at 9 AM, hopefully I will report back happily soon thereafter.

Thank you all SO MUCH for your kind words and invaluable advice. I feel confident and ready because of you!
P
P PluotMember
I have an epidural for the pain -- it must be a pretty high basal rate because I've only wanted to press the button every hour or so and only to "stay ahead" of the pain

My main problem right now is that the hospital is very crowded so I am still in recovery. They are saying I will probably have to sleep here. I am comfortable enough but I want to get up and walk and I don't think they will let me do that until I'm moved to the GI floor.

Surgery was all lapro and the doctor says he sees no reason why we wont be able to do a pouch.
P

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