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Surgery - uh oh

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Irishgirl

Guest
surgery - uh oh

well went to see my crohns doc - for the person who asked me, i attend beaumont in dublin. told him about my pains and he said that the endoscopies, barium and cat scan showed that where i have the worst pain is fine, and that the pain from my crohns in my intestines must be radiating up into different parts of my body. i was on 50mg of imuran so now thats gone too 100mg which still isnt the full amount ive to be on

but he did suggest surgery. he said he will bring up my case at his next conference and i have to see him in a month to see if the surgeons agree with him that i need it.

has anyone out there ever had some of their intestine removed? if so i have a few questions :)
how painful was it after the op
were you in hospital long
did it take long to recover?

thanks you guys!!!
 

mikeyarmo

Co-Founder
Truthfully, the surgery was not bad. It is no walk in the park, but I would not consider it as bad as the months of no food, no energy and pain that I experienced before it.

You go into surgery having to deal with the insertion of an IV line or two, and that is it. You then fall off to sleep and the surgeons do there thing. You awake to a drug-induced haze. I really was quite out of it, and was having trouble keeping my eyes opened. There is some pain, but it is very manageable, especially since you are not moving much (which results in no pain) and the drugs you are pumped with. For the first afternoon and night I was visited a lot by nurses checking everything, but after that things quiet down. Each day afterward you should walk to help get the digestive tract moving, which will make your hospital stay and recover end sooner. Each day the pain decreases, especially if you do try and move around a bit (even in bed side to side). I was off morphine on the third day (my choice), as it can slow down to digestive tract, so it is best to use as little as possible.

Total recover takes closer to 2 months, but you can be out of the hospital in about a week. You will likely be off all food and drink for at least 2 days, then start with liquids( once your stomach has started up again and you are producing gas). And after your first bowel movement or after tolerating liquids you can start food again. There is some gas pain after starting foods again (which I found to honestly be the worst pain) but it is dealt with pretty well by walking. Even though at the time you may just want to lie in bed, it does not help. Only walking (not even morphine) helps.

Good luck and feel free to ask anymore questions you have.
 
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meowsie

Guest
I concur with Mikey. I had the surgery back in April, and the relief I felt after years of so much pain and trouble was SO worth it. I'm now feeling better than I have in years!

Mikey's right. Walk walk walk and walk some more after surgery. Get them to give you an epidural for the pain. I didn't have a moment's worth of pain w/ the epidural. Nectar of the gods, I tell you! :) The gas pain is the worst, but walk walk walk... etc.

I was off work for 3 weeks w/ my surgery, and back up to full strength after about 2 mos. Since my surgery, I've gained about 25 lbs and am back to a reasonable and healthy weight. It's amazing what a little digestion and absorption of nutrients can do for a body. ;)

I'm sending out good thoughts and easy recovery vibes to you whenever you do have the surgery. Hang in there!
 
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Skinsfan1229

Guest
I was only in 4 days for the first two resections. The pain is much better to have then the crohns pain, seriously, you'll feel better after surgery, IF you need it, try to avoid surgery, I woudl recommend even if you have to be in the hospital for 10 days on steriods, and NPO, its worth not losing some of your bowel. Risk goes up tremendously at the point of resection after surgery.
 
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Valentina

Guest
Ive avoided surgery up to this point, so cant answer that part of it.
its a big decision though, as Im sure you know/feel.
I personally wanted to avoid it at all costs, so for me trying every med and med mixture I could first was the only option.. then put me in a coma... then if nothing else.. maybe surgery. but Im a chicken :)
I have nothing put respect and admiration for those of you who know when to say enough is enough.. cut it out, I want my life back. that to me takes a lot of strenght.
good luck with watever comes your way. I hope it all goes well :)
 
I

Irishgirl

Guest
thanks you guys. really appreciate it. my crohns has been fine for 4 years and just the past 12 months have been complete agony. its been so so bad. i cant stay on steroids for long cos ive had rheumathoid arthritis for 10 years so its not good for my bones.
it just feels like ive tried everything else... with arthritis i thoguht, ok after i have my hip replaced life will get back to normal, and i waited for as long as i could until i couldnt walk any more until i got it done. then when that was done i had really bad arthritic pain in my foot and needed surgery for that this year. when they were both over i started thinkin - ok,im 26, time to live my life and feckin hell, stomach has been in bits since. i thoguht the humira would give a lil relief for my crohns - its fantastic for the arthritis, but nothing. i thought the imuran would help big time, but again, nothing. and its getting to the stage where i just cant cope any more and i do think surgery is the only way to go

i think my moment of clarity was having to go to the bathroom in work to cry for a few minutes because the pain was so bad.
 
Oh, I'm so sorry you're having so much pain. It hurts to even think about it! :(

As to surgery, you and your docs will decide together if it's right for you. The outcome will depend at least partly on how much they have to remove. Smaller section = quicker recovery and less posibility of complications.

Best of luck!
 
If you have surgery depending on your health going in and coming out of the surgery make sure you have a family memember their with you AT ALL TIMES!

I fired my hospital after having the worst treatment EVER by any means an any of my visits to various hospitals. (I had used and semi-trusted this hospital for 3 years and its GI staff..)

I remember when I was 18 I had my first surgery... They removed 6 inches of the small intestine near the illosiocal? valve (the one next to the large intestine) fixed two fistuals that connnected my small intestine to my bladder (kept having UTI (Uniary Tract Infection) but I was in so much pain and misery and I didn't stop and think hey guys shouldn't be getting UTI's..... Plus ummmmmmm air sputtered out when I pee'd... Freaked the ever loving hell out of me... I thought it was broken and I had ruptrued something... But I mean how the hell do you react to sputer sputer UTI when your a guy? You say everything is fine here nothing is broken it can't be broken cause if it was well you get the point.... And they removed my appendix too... As a side note if you are 22 or younger their has been documented studies showing you have a less likely chance of having recoring surgiers later on in life if you have your appendix removed before that age.....

I remember going in and then waking up in PAIN DEAR GOD PAIN.... They just had me on a morphine pump that you have to mash to get the morphine... I had never used one before.... So after that night of living hell (I kept forgettting to mash the buttton) I set my watch (cheap watch but with a count down stop feature) to buzzz every 5 minutes which is when I could get my morphine.... I did this for 4 days... Then I felt like my heart was gonna explode so I told them take me off the morphine completly..... I don't want it... I can't handle it... Big mistake their..... At the time I still had an NG tube down my throat a central line hooked into my neck, plus a regular IV, and a cathater stuck in me... I din't mind all of that before when I was on the morphine because hey I was on morphine.... That morining though my cathater bag was full... I felt like super crap had NO pain meds in me (4 days after surgery).... So I know physiscs and I know about pressure gradents.... So I stood up on the bed and called the nurse telling her she needed to come and empty the catheter..... 15 Minutes passeses till finaly the nurses shows up and has a freaking cow.... I tried to explain to her simple physics but all she saw was a patient standing in a bed....

I was gonna finish this but now I'm tired and I need to finsih laundry and make my bed (got a serta 4 inch memory foam topper from overstock.com for about 205 with 2 memory foam pillows tax shipping everything....) I'lll let you guys know if it sleeps good... Granted I never sleep but I'm goign to try ....


Ok night night
 

Kev

Senior Member
Irishgirl... The pain from a resection (I've had about 1 & 1/2 feet of large colon removed) is nothing compared to the pain from crohns. If you are very worried over the pain, let me put your mind at ease. I was walking the day of my surgery, and kept doubling my distance and number of trips each day. As for pain controll, you'll probably be given option of epidural or the pump. I looked long and hard at both. epi is supposed to be the best, but it carries a slight risk (infection, possible paralysis - extremely rare). I went with pump. I had no problems, pain was so slight they took me off it after only 2 days.. I wish they'd waited until AFTER they removed the catheter (that did smart). OK, so the surgery isn't bad at all, and the post op recup was the nicest 7 weeks of my life in the past few years... BUT, surgery is a last resort as it is permanent. You can't get that bowel, colon, whatever, back after they take it out. If they take out too much of the large colon, you may develop ongoing diarhea that will never end.. (at least that's what my surgeons told me could happen - I was fortunate, they didn't have to remove that much). I guess what I'm trying to say is this... If your doctor advises you that surgery
is the only or best next step, AND another independant doctor agrees (you'd be well advised to insist on a 2nd opinion) then you shouldn't worry about it. It is major, but it is routine, and I can tell you first hand it really isn't as bad as you might fear. If you do go for it, then God Bless, and I bet you'll awake after the operation and wonder what all your fears were about anyway, OK?
 
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Ruthg

Guest
pain re - surgery

Everyone seems to have had quite positive experience from surgery. Mine wasn't quite so simple, I did have a foot of small bowel (the illeum section) and appendix, and some colon removed but, I had problems with really bad fistulas. My small bowel had become lodged in my pelvis and was causing infection which caused the fistulas. So, I had to have a laparotomy (an incision from the top of my tummy above the bellybutton roght down past my caesarean scar (s)) About 7 inches. The incision allowed the surgeon to remove the infected intestine section and see to the fistulas. I was then given a loop illeostomy (temporary) to allow my fistulas to heal properly and rest my colon. Anyway, because it was quite complicated, I was in hospital for 8 days (was allowed home after much begging) and total recovery was 3 months. The pain after the op was excrutiating (sorry to scare you) I had an epidural which fell out, then I was linked up to morphibe, which didn't do much except make me feel sick. It was just the worst time of my life, for 5 days I cried I was in so much pain. Eventually it wore off, but I wouldn't want to go through it again!!! Don't panic tho, for a resection I don't think they do a laparotomy, not sure tho. The positive thing is I feel much better now 4 months down the line and am looking forward to having the illeostomy reversed and going to the loo normally (whatever that mey be!!!!0:)
 
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