Crohn's Disease Forum » Surgery » Surgery- easier or harder than you expected?

04-21-2012, 01:51 PM   #1
Join Date: Sep 2011
Location: Michigan
Surgery- easier or harder than you expected?

My surgeon tells me that for most of her patients, surgery is harder than they expected. I am wondering what other people's experiences are? Was it easier or harder than expected? I realize that some of you were in such horrible pain before surgery that the surgery was a relief. However, that will not be the case with me. I currently have very few symptoms.
Crohns diagnosed 2001
Humira, Azathioprine
July 2012 laparascopic ileocolonic resection
04-21-2012, 02:22 PM   #2
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Before my major emergency op, I'd never had surgery before. Just a few broken bones and screws put in, mostly under a local. (yes, really)

It wasnt the surgery, it was the long recovery! Open surgery is not ideal. If you can have surgery laproscopically, do so.

On the other hand my first parastomal hernia surgery was a piece of cake compared to the first, and it was open as well. But I was healthy!

I will say this, my recovery was hampered because I was soooo ill the first time. If you have surgery when you are healthy, you will recover MUCH faster than I did. That is the BEST time to have surgery, when you are still healthy. I realize that sounds daft, but it's true!
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
04-21-2012, 02:29 PM   #3
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Join Date: Feb 2012
Location: Deltona, Florida
I was in really bad shape before my surgery.. although at the time I had no idea I had any health problems, I just thought I had a 2 week long stomache bug. I had emergency exploritory surgery and ended up in ICU for a few days afterwards. I remember recovery being very hard (and i've had two CSections!) .. The drains were quite annoying. I was using a bed pan in the begining and even lifting my body up for that was sooo painful. Then I had to get out of bed and sit in the recliner which I remember so clearly because it sucked so bad. Once I got off the ventillator, out of ICU and in a regular room, things got easier everyday and I think it was because I was up and out of bed as much as I could handle. While I was intubated, I was obviously just laying in bed and from what I understand, healing is a little easier of a process when you can get up and walk around as soon as possible..
-Jennifer, Age 25
Mommy to two toddlers
DX with Crohn's disease 9/27/2011
Emergency exploritory surgery on August 2011 including - small bowel resection, appendectomy, removal of my cecum, right fallopian tube and right ovary and numerous abcesses drained.
Currently on:
Pentasa - 500MG 2 pills 4x a day
Calcium - 600 MG 2x a day
Vitamin D - 5,000 IU a day
04-21-2012, 06:30 PM   #4
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Oh A ALOT easier. Considering I'd never had surgery apart from investigational surgery, I went all out with my first one having my entire colon removed. After initially waking up in load of pain, I was pretty much ok after that, in terms of how I thought I would be. When they wheeled me back onto the ward I was already smiling and making jokes.

Obviously it wasn't easy, getting out of bed for the first time was rough and I vomited. Washing was very hard. I think all the drugs they give you helps so much. All the pain killers and anti sickness.

I think the hardest thing about it was how I was after I'd gone home. I was doing ok when I left the hospital so I wasn't expecting the pain to get worse before it got better. But once I uppsed my pain killer dose all was fine again and then I had a huge turning point one weekend and it was all good after that.

I think suffering from Crohn's makes these things easier to deal with though. You're used to pain, used to seeing doctors, used to being in hospital. And if it helps, I felt completely like a normal human being right up till my operation. I was almost thinking of changing my mind right before they put me under! Glad I didn't though

'You can't change the past but you can ruin the present by worrying about the future.'

Diagnosed with Crohn's colitis aged 9, 1992.

Panproctocolectomy and terminal end ileostomy October 2011.
04-22-2012, 02:06 AM   #5
Jamie Everitt
Join Date: Dec 2011
Location: Colchester, United Kingdom
I'm not sure that I can really add much more, but I thought that for the first few hours when I woke up, it was harder than I thought, and I began to regret having the op. However each day there after, gets easier and easier, then when I looked back, I realise that, bearing in mind what my body had gone through, it was nowhere near as bad as I thought those first 24 hours.

I'm only at day 12 post op, and other than an infection in my wound, recovery has gone well. Resting at home is the hardest part, I'm usually very active, and find it tough not to push myself too hard.

04-23-2012, 06:55 AM   #6
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Location: London, United Kingdom
It has been easier than I expected and I had open surgery. As a few others have pointed out, the first few hours after waking up were difficult. I was in a lot of pain and required a big dose of morphine to get comfortable. This was a surprise to me as I'd had surgery 4 times previously (hernia and perianal fistulas) and had never had any big issues with pain. I thought I had a high pain tolerance, but this really hurt! That initial difficult period was over very quickly however and I have made great progress since then.

Three weeks after surgery my two biggest challenges are fatigue and a leaking bag which has caused sore skin around my stoma. I do not have any pain or issues with the centre line incision which has almost completely healed. I am not ready to go back to work just yet mainly because of the fatigue, I would probably get through about half a day then need to go to lie down. This morning I had a visit from the stoma nurse and changed to a new bag design (convex Hollister) so hopefully that will fix the leakage issue.
04-29-2012, 06:57 PM   #7
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Location: Manchester, New Hampshire
I found the surgery to be easier than I was expecting. I woke up in some pain, I think more in my back than anywhere else from lying on my back for so long. The nurse helped me role a little bit and stuck a couple of pillows behind me to keep me off my back a bit. Then they also had a large syringe of pain meds going directly into my IV that a nurse would come around and push on every couple of minutes and I had liquid Tylenol that was in a bottle connected to my IV. To be honest I don't actually remember the nurse coming around to give me the meds or the liquid Tylenol, this is what my husband has told me. I had trouble staying awake for more than a couple minutes at a time when I first woke up (about 8 hours after the surgery started). I believe the surgical report I read later also said I had local anesthesia on top of the general anesthesia, so that probably helped. I stayed on top of the pain meds the next day, I had a PAC that I could hit every 7 minutes. Then on day 2 I tried to spread the time out more and each day I used it less. I had it removed by the 4th day post op. My surgeon had told me that if I didn't rely on the pain meds too heavily and I walked as much as possible that I would heal faster; so that's what I did. He actually didn't think I would have a hard time with the surgery since I was in such rough shape before it.

I had the follow up 3 weeks after surgery and he told me I basically could do anything that didn't hurt my abs and to not do ab specific exercises for at least 3 months. He said I could run, bike, hike, etc... We bought a house during this as well. The day after my follow up we moved our stuff into a POD; which I helped with. I helped less than I normally would have, but still brought things down from our 3rd floor unit. We moved into the house the following weekend and again I helped move things in. I then painted the living room this past Tuesday.

I know that I have been really lucky and that for more people it would take a bit longer. I am also one of the people that was in severe agonizing pain before the surgery; so I found the pain from the surgery to be tolerable. If I had to do over though I would have done it sooner before I got to that point as the surgery would have been more simple and I probably would have healed faster. The docs are always trying to prepare people for the worst. Hope you have a quick recovery!!

Diagnosed: Crohns Oct 2006
Prior Meds: Pentesa 4000 mg/daily; Cimzia 400 mg/monthly; Prednisone off and on from Aug 2011 - March 2012
Current Meds: Apriso started 4/14/2012
Surgery: Laparoscopic Ileocolic & Rectosigmoid Resection March 22, 2012
04-30-2012, 04:52 PM   #8
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Location: San Diego, California
So far it is easier than I expected. I had most of my colon removed, with an ostomy and will have it reversed back in a couple of months.

I had the surgery last Tuesday, was out of the hospital on Friday night. I am very little pain. I take 1 percocet every 5 hours and that kills any pain. I am taking walks around the block a couple of times a day. I am doing the low residue diet and have had no digestion problems. Stools more normal than I have had in a long time. Perhaps I forgot what normal bowel function was, I only need to empty the bag about 2 times a day.

Overall, I feel pretty good. I am just a little tired, and I can't do any bending or lifting, sore in the midsection. I thought I would be out of work 8 weeks, now I am thinking 4-6. My follow up is not until the 17th and I am signed out for 4 weeks currently, but I think I would like to take 6 just to make sure everything is up and rested and that I am comfortable with living day to day with the ostomy. Easy now that I just sit in a chair all day and have my GF home to take care of me.
Diagnosed in 1996
Currently on: Filgotinib clinical trial, Prednisone, Imuran
Colostomy surgery 4/24/12
Prone to skin infection, abcess, fistula, pyoderma, erathema

Past Failed Treatments:
6 MP
04-30-2012, 04:59 PM   #9
Crohn'sFor Life
Colon Free!
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Surgery was much easier than I expected. But, recovery took longer than I expected.

Rheumatoid arthritic pain is worse than the recovery pain from surgery. I had my entire colon removed.
Diagnosed July 2, 2009 Crohn's Colitis

Colon removed September 26, 2011.
Pathology showed UC instead of Crohn's.

I have arthritis that is very similar to RA, but not RA because I had UC.

Autoimmune related itch.

Meds: 15 mg/week Methotrexate for RA
Cetirizine for the itch
04-30-2012, 11:01 PM   #10
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Location: Wellington, New Zealand
Definately easier. I thought it would be the hardest thing i would do in my life, but really, its not. If you are so used to pain like Most of us Crohnies are, it toughens you a bit and helps you through the pain. Don't Get me wrong it is HARD. and you need help. god i needed help, i needed two people to help me up in the night to pee(And i was peeing at least 10 times a night so my poor boyfriend and mum got bugger all sleep!) cause if i had one person help me i would strain my stomach and god it would hurt. Otherwise get one of those bar things they have in hospital to help you out of bed, im sure they would be able to lend one to you or something. The hardest part was how your stomach muscles hurt and its agony to cough, flush the toilet, put your knickers on, sit up, etc. but really, its just the price you pay to feel well again. I seriously thought the pain would be worse though. (I am not counting the week after i was released from hospital and the nurses told me to take metamucil to help with constipation which was the biggest load of Crap they could have said, i got SOOOOOO blocked up and wen't to hospital with literally the WORST pain in my life... Just make sure you have a proper diet plan etc from your surgeon for your recovery.



Crohn's disease since 2002, with multiple fistulae

25 May '11 : colostomy formed, 70cm bowel removed + 50cm ileum removed.

16 October 2015 - open parastomal hernia surgery to be performed

Past Failed Meds: Pentasa, azathioprine, methotrexate, Humira.

Current Meds: Humira, azathioprine, fluoxetine, Brevinor, Fish oil, melatonin
05-01-2012, 06:36 AM   #11
Join Date: Feb 2011
Location: Shelby Township, Mi
Way easier! I had 12 inch of small bowel and little colon removed in Feb-2011 and recovery went great! I had an opne surgery so I have a large scar, no biggie. I know being in very good condition (besides the leaking fistula) helped with recovery, no drinking or smoking. I was off work for 10 weeks could of went back sooner, but wanted to make sure all was good. I regret waiting to long to go under the knife, I waited about 6 months being sick as hell. Since surgery I have gained 30 lbs and can eat anything! Good luck, Billy.
05-01-2012, 07:59 AM   #12
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Hi Billy,

It sounds like I may be having a similar surgery in a couple of weeks. They are removing about 2 feet of my small bowel and a little bit of my colon, for attaching purpose. Of course I have the normal worries...I have taken 3 weeks (including hospital time) off of work....I was told 4 to 6 weeks recovery. I guess I just don't that as I being an ass? Will it really take that long?
Dx Feb 2011
Just finished Prednisone after a year
125mg 6mp,
4g Pentasa 2x a day
Remicade every 8 weeks
Calcium/Vita D supplement

33 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.

John 16:33
05-01-2012, 08:29 AM   #13
Join Date: Feb 2011
Location: Shelby Township, Mi
Steelerfan, not sure what kind of shape your in, but I know being very fit helped with my recovery. I was on the treadmill within 4 weeks, slow, but getting back in shape. This is also a mental journey, I stayed super positive, and even recovered at my ex-wifes house! She and my daughters took care of me and I know their positive influnce also helped! Good luck, and don't sweet it, you will be good and healed in no time. Billy.
05-01-2012, 05:29 PM   #14
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Location: Manchester, New Hampshire
Steelerfan, I agree with bkbigfish. I was only out of work for 3 weeks. I think it depends on how physically demanding your job might be and whether you have open or laparoscopic surgery. My surgery was a mix of both, but the largest incision was about 4 - 5 inches. I also sit at a desk all day so I wasn't quite 100% (little more tired than normal and still a little discomfort sometimes), but could definitely work. With that said, I felt better than I did before the surgery! We moved 1 month after the surgery (we were closing on a house) and I did pretty much all the packing and helped with the move. I try to stay positive and moving. Good luck!
06-12-2012, 09:00 PM   #15
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Join Date: Apr 2012
Location: Southfield, Michigan
I appreciated reading all the positive posts regarding surgery. My subtotal colectomy is planned for July 13th and I'm scared scared scared, but I gotta do what I gotta do. Thanks again.
06-12-2012, 09:16 PM   #16
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My surgery and recovery have been a little hellish.
The surgery part was actually fine - woke up feeling great.
Then had a blockage .... had nausea non stop for about two weeks.
Was very sick leading in to the surgery, and very sick after the surgery.
My disease was out of control - which greatly impacted the period of time it has taken to get better. I went back to work after four weeks - this was too early for me. I should have waited 6-8 weeks.
Actually took about three months to feel better.
I'll be taking my time more with the reversal.
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Filgotinib trial Jan 2018
06-13-2012, 11:16 AM   #17
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I think I'm a freak, as I needed no pain medication after my open total colectomy surgery, even with a 12 inch incision. The nurses insisted that I use the morphine pump in the first 2 days because they were convinced that my heart issues were related to unrecognized pain, but apparently not.

I had heart issues after surgery that were finally linked to an anesthesiology error and not the bowel surgery itself. Aside from some of the expected nausea, dehydration and ileus complications in the first 10 days, my total surgery experience went much easier than I had expected.
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
06-13-2012, 06:08 PM   #18
Join Date: Apr 2011
Location: Houston, Texas
Surgery was much easier than I expected!! I was home after four days, and was sent home with pain pills but never used them! I would pop a couple Tylenol for a day or two after I got home but that was it! It was sore but not bad. It was laparoscopic but I had a good sized (3")incision in the belly button area that caused the most pain.

It hurt to laugh, cough or sneeze for weeks.

I'd say my bowel resection was the easiest surgery I've had lol.
First one I was very very sick and it was to drain a very large abscess. At the time had no clue I had crohns until then. Then my most recent was I had a couple setons put in for a fistula that won't go away.

I'm about a month out on that surgery and it's still painful, prolly because of the location.

But resection was easy lol good luck and try not to be scared.........I know easier said than done, I was very very scared before mine too
06-23-2012, 11:47 AM   #19
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Join Date: Feb 2010
Location: Tucson, Arizona
Mine was emergency surgery and it has been the worst thing I've dealt with more than crohn's but I probably have other issues going on. I guess most people have an easier time with it. However, I've noticed my digestive problems are starting to go away especially the loose BMs. Its been about 2 and half years since my surgery and I'm wondering if that is how long it takes for a full recovery.

Good luck!
DX: 2010 Crohns (in remission), gastritis/acid reflux, TMJ and goiter
SX: Terminal ilieum resection
Past meds: Prednisone (short term), Pentasa
Current meds: Sertraline, Seroquel, Lorazepam (as needed)

Supplements: Trace min EOD, Fish oil, calcium+D, B12 sublingual + B complex, goat yogurt

06-27-2012, 10:03 PM   #20
Mia E
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im 12 weeks post sugery and i would say its been a lot harder than i expected. i had similar experience to wolfem, was a quick procedure so would think perhaps if i was contemplating it for a while it might not have been such a shock to my system. not only was i recovering from surgery, but coming to terms with having a diagnosis after surgery of crohns to explain the hellish year or 2 i had before where i think i just struggled on for too long. i had been in hospital for a week not eating and in a lot of pain, my body was a wreak going into surgery and worse after.
i think be careful to read comments on this forum, everyone is great but when i got out of hospital the posts i focused on were those people who were back at work within 4, 6 or even 8 weeks. take it easy! ive realised i rushed too much, expected too much of myself and was actually comparing myself to people on here and feeling i should have been better. everyone is different and now i look properly and see the posts for those people who didnt bounce back as quick. i had a high thinking i was great at about 8 weeks, but actually wasnt, just convinced myself i was!! remember u only hear the things you want to hear!x
-april 2012-diagnosed crohns- only after surgery (resection terminal ileum,ileocecal valve,appendix & cecum)

for me crohns is not cool
07-24-2012, 10:58 AM   #21
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Definately without a doubt the hardest thing I have ever had to do in my life. It was an emergency and my body was at death's door before it and it took me 3 months to recover and 3 months before I could do anything for myself. I had help with absolutely everything.
07-29-2012, 03:00 AM   #22
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I found the whole surgery process a lot easier than I had expected or feared (open surgery - ileostomy,14cm small bowel removed - October 2010). I was kept informed and involved through all the lead up process as this was planned, not emergency, surgery. Because of this involvement I was able to get into a completely relaxed mindset which I'm convinced helped me overcome the setbacks through the whole process. The most stressful time of all was waiting for the call from the hospital on the Sunday afternoon to tell me that my bed was available. Once we were on the train to London I went back to laid back.

The worst experience immediately after surgery were the hiccups and the really bad nausea which lasted several days. It was the only thing that I wasn't told to expect as it doesn't affect the majority of patients.

The recovery process was as expected but slightly extended by a period of heavy snowfall at the point I was due to return to work. I didn't fancy getting stuck on a train to London with an over active stoma so waited until the thaw.

I recorded the whole process from the initial meetings, through surgery, stoma, a couple of emergencies, reversal and my latest possible Crohn's/surgery side effect - PVT - in a blog. See link below.

One final thought on surgery - if it's being talked about then it's pretty much inevitable you will end up having to have it. From it first being mentioned in 2000 I managed to put it off for 10 years. Looking back I now think that I should probably have had it done sooner but hindsight is a marvellous thing
Wrestling The - the companion website to my, shortly to be published, book on 4 decades of Crohn's and other issues

Not taking Crohn's meds at present. In the past - pred, pentasa, aza, entocort, infliximab - with varying degrees of success

Currently on :
Loperamide/Colesevelam to keep the BAM at bay
Propanolol/Omeprazole for PVT
B12 injections

Twitter - @crohnoid
07-29-2012, 10:05 AM   #23
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Join Date: May 2012
Location: Halifax, Nova Scotia
I am going to have surgery soon, I have a stricture in my TI and have had a very large abscess drained in April, it was 8 cm. and 500 ml of fluid was drained. I still have several abscess, but the docs say they are "sterile" Hope so! I have no disease in my large intestine, but my Terminal Illium is a mess. They have been talking about surgery for me since I was diagnosed in 2006, now the time has finally come. I can't wait to have it done and overwith. The key seems to be stay calm, and stay positive. I will try!
07-29-2012, 10:07 AM   #24
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Good luck hope it goes well and keep us informed x

Crohn's Disease Forum » Surgery » Surgery- easier or harder than you expected?
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