To those that elected to have surgery

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tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/7/2011 1:58 PM (GMT -6)   
I started at ulcerative colitis forum, and now jumping to ostomies because I finally made the decision to have surgery!  I've been dx with crohns colitis but they are going to attempt to form a j pouch for me.  I have been really sick since last July so they might do the surgery in 3 steps.  So, I'm depressed (obviously after being sick sooo long).  I sleep all the time, am terrified to leave the house.  I go 25 times a day and another 10 or so at night.  I am popping pain pills like candy but my whole stomach still aches!  I had all this hope that surgery will make me feel better, then I found out I have to wait until June 8th (and hope it doesnt get rescheduled)...  I can't imagine waiting another week, let alone two months!  How do you cope?  All I can think about is: how am I going to stay out of the hospital?  Am I going to make it to the date or is my colon going to explode?  Were any of you really sick and had to wait this long??  Maybe it's just since I made up my mind; I am now impatient?  Ever since I've been diagnosed, it seems I can never get the help I need WHEN I need it!  I'd have to wait a month to see my GI for each appt when I needed to see them much sooner.  They'd keep me on meds longer than neccessary when I found out they don't work.  I just feel neglected.  I know the world doesn't revolve around me, I just need some advice on how to wait!  Thanks for listening, I don't know any of you but all the posts on here have been a lifesaver for me!
DX 2/10 UP. DX 10/10 UC. Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, Vicodin, Xanax, Imodium, tramadol. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine/codeine, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/7/2011 3:51 PM (GMT -6)   
Once I made up my mind, then my surgery was scheduled for two weeks later. That wait drove me crazy, so I can't imagine knowing months in advance. I'm sorry you have to wait so long. If it's at all possible, I would call your surgeon's nurse like once a week to see if there are any cancellations you could take. Be super polite and just let them know you're happy to take an earlier spot if something opens up. Sometimes that works.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/7/2011 6:11 PM (GMT -6)   
hi, while your UC experience matches mine, on fixing a date for my perm ileo surgery, i gave myself a 6 week lead up purely because i wanted to delay the hell !!! which i thought would exist with a bag, (i hadnt found this forum back then), although the docs & nurses said that life would be better i just couldnt imagine that being true - it just couldnt possibly be. happily they were very right.

during the 6 week wait, some friends who are very knowledgeable with herbal medicine, who did not agree with the surgery option, decided that if i was going to go ahead with it that they would get me into the best possible shape to cope with the op & recovery - i followed their advice & took everythig they offered & i believe it helped greatly.

clearly you would wish for an earlier date but now that your focus is on surgery rather than beating UC, it might be useful to consider what you might be able to do during the waiting period which will aid your getting thru the surgery & recovery

keep your chin up
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 4/7/2011 6:24 PM (GMT -6)   
I agonized over the decision to have surgery for 2 years. Last June I fianally had enough of being sick and went to see my surgeon and from that point I only had to wait 2 weeks. Boy that was the longest 2 weeks of my life!
 
I'm sorry you have a long wait.  I would take the time to gather as much info as you can about the surgery. There is also a great site called jpouch.org. It's a great support site like this one. I wish I had found these sites before my surgery. It wasn't until after that I found them.
 
Honestly, the surgery isn't really that bad. The toughest part for me was dealing with the temporary ileostomy. But I knew it was just temporary and I made it through just fine.
 
I am now enjoying being UC free and loving it! I can eat whatever I want again and only visit the bathroom 4 or 5x a day. (Compared to 20-30x in the UC days, ugh) Keep your eye on the prize: Not being sick anymore! Best wishes to you! :-)
 
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/7/2011 6:27 PM (GMT -6)   
Trying its hard to wait when you know what's happening and I can't believe they are making you wait that long. I think I waited like a month. And I was not as sick as you. All I can tell you is to just keep remembering that in a few months you will be better! No more drugs or going all the time. You will have won your battle and beat uc!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/7/2011 6:29 PM (GMT -6)   
I was in your exact situation, going that often, that much pain, crohn's colitis, etc. I couldnt' eat at all. I went to see my surgeon and had surgery later that WEEK! He squeezed me in becdause he could see I was seriously unfunctional. I hope you can find a dr who can get you in sooner. You can't live like this for 2 more months.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/7/2011 8:41 PM (GMT -6)   
run4pancakes - good advice about calling to see about cancellations, I'm willing to try anything to speed things up! :)

villager - what herbal stuff did you take that helped get you healthier for surgery? what can I do now to aid my surgery / recovery??

ByeByeUC - I hope Im as lucky as you only having to go 4 -5 x day :)

summerstorm - no more meds! Now that's a thought that'll keep me going....

80sChick - I totally feel like I won't make it two months, I just don't see how it's possible with the shape Im in! I don't know about seeing another surgeon though... I am already traveling to Duke University in NC because there aren't any good surgeons in my area. My understanding is Duke surgeons are just that backed up :(

thanks all for responding! it brightened my day!
DX 2/10 UP. DX 10/10 UC. Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, Vicodin, Xanax, Imodium, tramadol. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine/codeine, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/7/2011 8:49 PM (GMT -6)   
So sorry you have to wait that long... especially with your symptoms being so bad. That would be really hard. Once I consulted with my surgeon, I only had to wait two weeks. I was in what felt like a very tenuous remission after being in the hospital for fourteen days, and I was so afraid I was going to flare again. My surgeon said he would have had to postpone the surgery if I flared again, and I just wanted my colon out so badly. Fortunately I didn't, but I couldn't have imagined waiting over two months. Hopefully there is a way you can get in earlier.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/7/2011 8:54 PM (GMT -6)   
Can you consult with another CR surgeon? My surgeon schedules his surgeries 2 weeks out so his patients don't languish. So civilized!

Sue

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/8/2011 4:50 AM (GMT -6)   
You all with the two week wait for surgery are so lucky! Sounds like a dream to me!
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 4/8/2011 6:45 AM (GMT -6)   
I was put on the waiting list for a Proctocolectomy at the end of January, and am going in tomorrow for the surgery!! I have hated the waiting and was a little messed about with hospital dates inbetween, but found that it has actually gone quite quickly. I've tried to look at it as what is 2 or so more months when I've had the stupid disease for nearly 4 years?! Hang in there, it'll be here before you know it. smilewinkgrin
24 y/o female from UK dx with UC (Proctitis) Jan 08. Never fully been in remission, resistant to all meds apart from Pred and Infliximab. Also dx with IBS. Proctocolectomy+pouch surgery 9th April 11.
Currently taking daily:
Spasmonal x 3, Motilium x 3, Tramadol x 3, 50mg Azathioprine x 2, 60mg Seroxat (anti-anxiety), Multivitamins

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/8/2011 7:44 AM (GMT -6)   
When hubby had his "Ah Ha" moment with our local GI Dr last June we set the wheels in motion with Mayo Clinic for surgery. We had a trip planned in Oct. and wanted the surgery hopefully early Nov. Due to a prostate issue and he needed biopsies taken and a one month recoup afterwards with all the logistics arranging everything he couldn't have the surgery until 12/17th. That made it seem like forever too.

He was on pain management so he was on somewhat of an even keel but the urgency and frequency and anxiety still persisted. He had ok days and not ok days in that 5 month period so I can truly understand your frustration although I think you are in even more distress presently.

Yes once you make up your mind, the acceptance of it all etc. it does impact the situation and your nerves....just try hard to hang in there and focus on the eventuality of better days after the surgery, recuperation etc.

Keep checking in here too...there is a lot of hope when you read the posts of different people I/we find. I also did a lot of research beforehand and gathered info here so we were both quite prepared too and that really made a big difference.

Good Luck.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/8/2011 10:44 AM (GMT -6)   
I had to wait 2 months and yes it was along wait. BUT..

I got educated about procedure

I learned to knit! (who knew I had it in me, I probably made the same scarf 4 times with all the do over parts)

I tried to get healthier for the operation by eating better, taking some herb stuff and exercise when possible.

I took a meal to someone that was sicker than me

I wrote quite a few long over due emails and letters to friends and family

I even sewed a quilt top for distraction more than anything else

I made goals to keep my head busy and time went by
Hope you stay on here and ask questions and keep educating yourself. We're all here for you. God bless

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/8/2011 11:12 AM (GMT -6)   
qwerty1 - OMG I can't believe you had to wait so long! Best of luck to you in your surgery!!! Good things come to those who wait! Right? :)

Thanks for posting everyone!!!
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, codeine, Xanax, Imodium. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine, Vicodin, tramadol, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 4/8/2011 11:50 AM (GMT -6)   
tryingtokeepmyheadup said...
qwerty1 - OMG I can't believe you had to wait so long! Best of luck to you in your surgery!!! Good things come to those who wait! Right? :)

Thanks for posting everyone!!!
Yes...10 weeks and 1 day to be precise! But I made it through and you will too :)

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/8/2011 6:42 PM (GMT -6)   
re the herbal remedies i took while waiting for surgery i would be reluctant to give specific details as i have no knowledge of their strengths or implications & i would not like to cause anyone further complications by giving bad info - i consulted a friend who is a qualified master herbalist & he provided me with remedies (i'm not sure if that is the right word) to strenghten the immune system, liver function, kidney function, blood citculation & to promote/assist tissue regeneration to heal the external & internal cutting which lay ahead, these remedies were in the form of drops to be taken in water and capsules to be taken with food - there was no brewing or boiling up of herbs so there was no great works involved on my part

the herbal option is not considered useful by everyone & we are all entitled to hold an opinion - i personally feel that this preparation & of course the excellent nurses who took care of me, made my 6 day hospital stay all-in-all a very enjoyable one. apart from some discomfort from my abdominal wound (i had laparoscopc surgery) for a day or two, i can honestly say i look back on the whole experience with very positive memories

i might add that i did try many 'alternative' type treatments for my UC but neither these nor the conventional meds helped too much

i dont know how herbalists / alternative medicine is considered in the USA but given the time you have to wait it may be something you might look into

cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!
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