Just had colon removed 6 days ago, ask me anything!

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qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/27/2009 5:35 PM (GMT -6)   
UC for 4 years, pretty resistant to medications. Prednisone was no longer acceptable to me. Weekly Humira made me feel like crap and didn't work long enough at all. I'm 24yrs. old Male at about 230lbs pre op, ~220 post op it seems, lost somewhere around 7-10lbs maybe, mostly from the colon I'm sure. Looking forward to going home and throwing out my Humira and shoving my prednisone deep back into the shelves never to be looked at again. Feel free to ask me any questions, nothing too personal for me here. I felt like there were a lack of positive reinforcement threads on the internet about the surgery, and FOR ME the surgery hasn't been a big deal, I'm already up and walking and feel 100% not even a week after the surgery. I've already been able to eat hamburgers and everything just fine.

I just had surgery 6 days ago. Today I've been unhooked from my IV so now I'm pretty mobile. All I have left is the removal of inflammation tube and pouch which is collected fluid, then I can go home with my colostomy bag tomorrow. I was up and walking around either the next day or the day after the surgery. Pain was never really an issue, just trying to get out of bed the first 3-4 days was a tender situation, walking wasn't bad though. Personally I thought the surgery was a breeze... but I'm still pretty young (24) and was probably not in as bad shape as many who turn to surgery were. Walking in for the surgery was probably one of the hardest parts, getting into the gowns, slippers, and the hat etc. is kind of scary, but they put you on some good drugs and when you're rolled into the operating room you're really at ease and feeling good, then they totally black you out which I can't even remember happening. I just remember then asking me about my job for a bit and then I was out. They woke me up in the operating room after the surgery which I don't remember, but I do remember them telling me to wave to my dad as I was wheeled past the waiting room into recovery. One of the worst parts for me was the pee tube catheter and being woken up many times a night for IV change, catheter changes, etc. Other than that I feel great today and actually feel like I could go back to work tomorrow if I wanted to... but I will probably wait at least another 3-4 days if they even let me go back so soon. The bag doesn't even smell like normal stool, doesn't smell great but that's just during the bag change, and I'm not sure many people would even recognize the smell anyways, since it smells different than typical poo, at least for me. Prednisone, Humira, etc. taken in high enough doses are pretty bad. I can't say I've regretted my decision 6 days out so far, and things are only getting better, bag will be removed in ~2 months and I feel fine. For me the surgery seems to have gone 100% as planned though, so I don't know what it's like if things go bad. I had my surgery done at UCSF medical center and can't complain so far. I had UC for 4 years, and was taking weekly Humira but stool frequency increased and I had to resort to prednisone again. I don't think that's really a road people should go down for very long. Even having a permanent bag I could probably deal with (I'm probably more conscious of body image than most males and so far I don't even really care about having the bag much for some reason...), but I'm betting once my J-pouch is connected it should work pretty smooth. The ostomy can be pretty loud at times when it's spitting out waste, but it seems to only last for maybe a 5-10 minute spurt and then slows or quiets down. Only notice this a couple times of day, maybe in the morning or everning. I've only had it functioning for 4-5 days now too, so it should slow down and probably get quieter too. The first ~2-3 days after surgery there was only inflammation fluid that came out into the bag, and then with a liquid diet the ostomy started producing waste maybe around the 3-4 day for me.
I was on prednisone for a few weeks before the surgery, and was down to 2.5mg or so only a day or 2 before the surgery. They actually wanted me to keep taking it up until the day of surgery but I quite taking it a day or 2 before. They put you back on after or even during the surgery anyways, to reduce inflammation post surgery. Today I'm switching to oral prednisone for hopefully just a few days until the inflammation is down enough. Up until now I've been taking corstisone or something liek that through IV, something related to prednisone or maybe the same type stuff. I was also on weekly Humira just and stopped just a couple weeks before my surgery.

Post Edited (qazwsx12) : 7/27/2009 5:41:30 PM (GMT-6)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 7/27/2009 5:58 PM (GMT -6)   
     I am very happy for you.  Unfortunately, my situation is very different.  I didn't get UC until I was 52, almost eleven years now.  After my first hospitalization, I went into remission for two years.  Another round of prednisone for a few months and put on Colazal for maintenance.  Remission for another two years.  Put on 6MP six years ago but still flare and the flares are getting closer together, I am in my second this year.  Hospitalized for ten days last year.  Remicade is not an option for me either.  Seeing a UC specialist as a consult at recommendation from my GI doctor who is at the limits for treatment for me.  I will be seeing a Dr Liechenstein at the Univ. of PA hosp. in Philly at end of Sept.
     I already have osteoporosis from the prednisone usage over the last several years and God knows what else.
     Was your UC throughout the colon?  Mine is limited to the rectum and is classified as mild/moderate.  Hate to see what they call severe!  I am down to 30 mgm of prednisone (doc never starts me at higher than 40 mgm) and tapering 5 mgm per week, 100 mgm of 6MP, nine Colazals, Cort enemas nightly and Canasa suppository in the morning.   Have to have an ultrasound of the pancreas, gall bladder and liver on Thursday.
     Wish I were younger, I would go the same route as you.  Good luck and God bless.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/27/2009 6:17 PM (GMT -6)   
Good to hear that you're doing well after surgery. All the best for a quick recovery.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 7/27/2009 6:26 PM (GMT -6)   
Thank you for sharing you surgery story!! I am so glad to read that you are doing so well. I hope your recovery continues to be smooth. Please keep us posted.
Julie

Mom of Son 17 UC dx 07/02, Prednisone 10 mg, Lailda 2 am & 2 pm, Azasan 100mg, Cortafoam (when flaring), folic acid, L. Reuteri, Culturelle, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Prednisone 5 mg, Colazal 750mg x 4, 6MP 25mg, Iron, Vit/Min., Culturelle


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/27/2009 6:48 PM (GMT -6)   
My entire colon was not affected. It was just the left side I'm pretty sure, and not a huge amount of centimeters were affected either, but what was infected was enough to be drug resistant and cause problems.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/27/2009 6:55 PM (GMT -6)   
I'm so glad that your surgery went well! I like to hear positive stories about the surgery. Speedy recovery but remember to not overdo it now! :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/27/2009 7:29 PM (GMT -6)   
It's so great to hear a positive story - thanks for sharing!! :-)
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 7/27/2009 7:37 PM (GMT -6)   
Congratulations and speedy healing! Thanks for posting... even though I am still desperately trying to avoid surgery, I now feel I am just going through the motions and am very close to following in your footsteps. Was your surgery laparoscopic?
Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative), low carb SCD
Some partial success with TSO but  too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
homemade fecal infusions, maybe surgery this year soon
 
 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/27/2009 7:46 PM (GMT -6)   
I was so interested to read your surgery experience! I am at my sanity limit and have decided to ask my dr about surgery at my next visit. Unless remicade miraculously kicks in before then, of course. It was very nice to read your positive experience with this. Thanks for sharing!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/27/2009 8:28 PM (GMT -6)   
Yes the surgery was laparoscopic. I'm counting 6 incision areas total. There are really small ones that are already scabbed over and seem like they could just flake away and disappear already. There is the ostomy one, which mine appears to be nicely round instestine coming out and pretty small, this will be closed after the second surgery. I had a plastic rod put through my intestine the first 3-4 days to help keep the instestine from wanting to slip back inside I think. Not painful though, since the instestine itself has no pain receptors. I think this is more of an issue for people with a bit more body fat on the stomach area? There is also a small hole with the drain tube coming out. The biggest scar is down under the belly button area and is about 4 inches, I think this is where the colon was removed. Even this largest one doesn't seem to substantial too me, like it will be barely visible in a few years. Won't be visible with shorts or even underwear on either since it's so low. I think laparoscopic is more the norm now for these surgeries?

Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 7/27/2009 8:31 PM (GMT -6)   
Yes, thanks so much for posting your story... It's nice to hear the positive sides.... Some people tell me... YOU GOTTA KEEP YOUR COLON.. but then again... they don't have U/C and just don't get how miserable it can make you feel.. .I'd lose my colon in a HEARTBEAT if the meds ever stop helping... :)
Diagnosed with U/C  (Proctitis) January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of July 2009 :  OMG... I had a poopie today 7-23-09 (had to date that)..lol.. with NO BLOOD!!! First time in almost 10 months!!!!!!!
 
Meds are: Prednisone 50mg daily, Apriso 4 pills 1x a day.. .YEA! I take Xanax when needed and Ambien for sleep... Which is every day and night with all this darm PRED..
Nexium in the am for heartburn due to Prednisone..   Culturelle 2 times a day...
 
               http://www.myspace.com/77016897         


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/27/2009 8:44 PM (GMT -6)   
YAY im so glad you are healthy now!
And it will get quieter after a few weeks, lol.

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/27/2009 9:08 PM (GMT -6)   
Wow thanks for posting that. Congrats on the smooth surgery! Good to read a positive story about the surgery actually. Right now its my biggest fear along w/ cancer - having my colon out....so its comforting to read about a good outcome...

I have had surgeries before - and I am with you on the pee tube catheter!! When i was in ICU - they took out my catheter right before I was being transferred out....and I got so panicked right before they pulled it, I set off the alarms out at the monitors desk because my heart rate went so high - I had a full blown panic attack before the nurse yanked the tube...
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 7/27/2009 10:42 PM (GMT -6)   
Fabulous news that your surgery went well and that your recovery so far is smooth.

Thank you for telling us your experience, for it truly lessens the fear of having my colon removed should the day arrive.

Please keep us updated on how your recovery is going.

quincy
*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 7/28/2009 8:57 AM (GMT -6)   
i am also 24, male, 215 lbs....i have lots and lots of questions for you...but i will not ask all at once...first of all, i am really tired of being sick and never thought i would think of the j pouch option, but it is sounding pretty good, my wife is 13 weeks pregnant and i am worried i will always be sick..i know i shouldnt do the surg now, but thinking about after the baby is here..
my biggest question is, i heard this surg can cause permanent impotence and/or zero sperm count in men..this is a big concern cause i am newly married and we want a few kids..the natural way...Lol im sure you havent had time to test that out, but did your dr mention anything about that?;
 
and what about maintenence after the surg, are  you just cured? or do you have to continue taking medicine for years? i am happy for you tho..that would be very exciting!...
im thinkin of asking about getting back on remicaid for a couple years since we are already pregnant with baby number one...not sure if its an option since i stopped it last year...


24 year old male, uc since I was 17
remicade for two years, worked great but got married and was told it could cause birth defects so I quit feb 08.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 10 mg pred


UC since'76
Regular Member


Date Joined Dec 2006
Total Posts : 77
   Posted 7/28/2009 11:26 AM (GMT -6)   
How long until you can eat? What do they give you?

How long BEFORE the surgery do they stop you from eating?

When during the party does the NG tube go in?

Having this surgery about October. Start radiation and chemo TOMORROW.
Ulcerative Colitis since about 1976
Pan colitis since at least 1994
 
 
June 29, 2009 after being given the brushoff for months locally, I went to Vanderbilt, two hours away...
 
Rectal Cancer!
 
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/28/2009 12:47 PM (GMT -6)   
Let me know how everything goes for you. I'm 22 now and have had UC (undiagnosed at the time) since I was 19, so I'm going to seriously have to consider removing my colon before I'm 35 due to the cancer risks. I'm mostly worried about having a colosectomy bag, even if it is temporary, so let me know how that is.
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/28/2009 2:03 PM (GMT -6)   
Welcome to the world of the colonless! Life is much better post colon, at least for me. I hope your recovery continues to go well. Mine was fairly easy too.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/28/2009 2:41 PM (GMT -6)   
ruissarr said...
i am also 24, male, 215 lbs....i have lots and lots of questions for you...but i will not ask all at once...first of all, i am really tired of being sick and never thought i would think of the j pouch option, but it is sounding pretty good, my wife is 13 weeks pregnant and i am worried i will always be sick..i know i shouldnt do the surg now, but thinking about after the baby is here..
my biggest question is, i heard this surg can cause permanent impotence and/or zero sperm count in men..this is a big concern cause i am newly married and we want a few kids..the natural way...Lol im sure you havent had time to test that out, but did your dr mention anything about that?;



and what about maintenence after the surg, are you just cured? or do you have to continue taking medicine for years? i am happy for you tho..that would be very exciting!...

im thinkin of asking about getting back on remicaid for a couple years since we are already pregnant with baby number one...not sure if its an option since i stopped it last year...


My surgeon told me the impotence rate is somewhere around 1-3%. Those are pretty low odds, probably even lower the younger and healthier you are. I'll say that probably within the first or second night after surgery, even with a catheter in me that there was some "movement" down there lol, which was uncomfortable while having a catheter in... this happened several times to me so I can only assume all is perfectly well on that front. I don't know about my sperm count, but I'm sure it's probably the same from all outward signs anyways. Everything seems exactly the same for me so far.

As far as I know, you no longer have to take any medications after the surgery if all goes well. You may have to eventually take some antibiotics if the created J-pouch becomes infected, but this is pretty minor and usually easily cured with a short course of antibiotics. I have to take prednisone and dose down on it for the next 5 weeks or so, but this is just for normal post operation inflammation control, then I will never have to take prednisone again, at least for UC. Some people like to or may need to take fiber supplements, but these are over the counter and I think are good for you anyways.

qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/28/2009 2:52 PM (GMT -6)   
UC since'76 said...
How long until you can eat? What do they give you?

How long BEFORE the surgery do they stop you from eating?

When during the party does the NG tube go in?

Having this surgery about October. Start radiation and chemo TOMORROW.


I started a liquid diet of pretty much just chicken broth, jello, low sugar juice maybe a couple days after the surgery. I moved up to a low residue diet somewhere around 4-5 days after the surgery, which was almost normal food like pot roast, white bread, chicken soup, pasta... basically stuff that digests well, not raw vegetables or stuff that sticks in the stoma coming out.

I stopped eating at midnight sunday and didn't eat all of monday, then my surgery was on tuesday. I had to take a laxative pill and drink a gallon of this laxative type stuff, that gets rid of everything in you...

I'm not sure what the NG tube is? All the tubes are put in while you're sedated during surgery though and aren't painful once you wake up. Today I was discharged from the hosptial and had the inflammation drain tube removed, it was just pulled out by hand quickly, not bad at all. The catheter tube removal was the more uncomfortable of the 2 tubes removed, but even that was a split second and not that bad.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/28/2009 2:58 PM (GMT -6)   
I think it helps that you had a positive attitude and expected the best, not the worst!

Worrying about bad things that might happen is very bad for your health, but so many people wallow in it. Congrats on being so strong.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 7/28/2009 2:59 PM (GMT -6)   

it IS nice to hear about your positive attitude. My son, also 24, had the 1st stage of the (3-step)  j pouch surgery and he has done very well, too.  He had his surgery May 7th and is having his 2nd stage on August 12th. I think he had a little harder time than you adjusting to the bag, but all in all, he is SO much healthier without that evil colon he was hosting.  for the year he was very sick with UC, he was losing his hair and having terrible headaches and joint pain from all the toxic drugs. His hair has already come back with a vengeance and the headaches have gone, as well as the joint pain. I think he actually feels lucky that he had it done so quickly and spared himself the dread of the drug side affects (which weren't e ven working for him!)

Best of luck to you and keep us posted with his progress. so many people are terrified of a surgery that can actaully give them back their quality of life. I hope your story encourages others  who are suffering so much. 15 months ago, our family didn't even know what UC was............now we look back and realized that it turned all our lives upside down with the relentless angst and turmoil is caused in our son's life. Like you, we all look forward to a more normal and healthy future!


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/28/2009 4:24 PM (GMT -6)   
great!! happy to hear your surgery went well... :-)
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 75 mcg in June'09 :-(


Tofu4Dinner
Regular Member


Date Joined Jul 2009
Total Posts : 29
   Posted 7/28/2009 4:33 PM (GMT -6)   
qaz,

Congrats on the successful surgery! I can't imagine being so young and having to deal with that. Keep up up to date on your progress.

Tofu
2000 - Diagnosed with UC
Asacol - didn't help - quit taking after 8 months.
Prednisone for 1 year - weakened my teeth to the point that some broke - quit taking.
2004 - Remission for 9 months! Woot!
2005 - Began taking Strattera for ADD and colitis went back into remission!
June 2009 - off the Strattera and colitis is back.
July 23, 2009 - Canasa suppositories - 1000mg x 2 a day

(Zoloft 150mg/daily; Xanax .5mg x 2)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/28/2009 7:16 PM (GMT -6)   
UCsince76-Most of the time you dont have to have an NG tube. That only happens if the stoma doesnt start working in the first two days or so.
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