Just got out of my first resection surgery

[Lewby437]

Hi all, my name is Lewis and I'm 22 years old. I've been suffering from Crohn's for about three years; the first of which I was undiagnosed. I've been a regular to this site for quite some time but have never joined up. As I lay here now in hospital post-surgery (I had 35cm of my small bowel removed due to a perforation and subsequent abscess); I'm beginning to come to terms with just how life-affecting this disease really is, and how difficult it is for people who don't know what's it like to be supportive of us, no matter how hard they try. I think I need to be talking to some of my own kind!

Just wondering if anyone can give me some advice on surviving the first few weeks post-surgery both in and out of hospital, though any general discussion would be greatly appreciated

 

[Grumbletum]

Hey Lewis
Well, congratulations on your first surgery! Did it all go OK? I see you're in Oz and I think some post surgery procedures are different from country to country. One thing, I think, which is common, though, is to get you up and mobile as soon as is comfortably possible. It helps with the recovery and also to wake up the bowel and get things moving again.
How's your appetite? In the UK, they have a system called ' enhanced recovery ' which means you can basically eat what you want after the op. I couldn't quite cope with that, so just played it by ear and asked for nutritional drinks til I was comfortable eating.
You may find that you have to cope with diahorrea for a wee while once things start moving again and, it that persists, they may give you something for it.
Listen to your body and don't push yourself too hard. If you feel tired, sleep. Your strength will gradually come back.
And keep us posted on how you are getting on x

 

[Kev]

My last one (years ago now... my how time flies when you're having fun) was done the old fashioned way.. whereas the one prior was laproscopic. I had less issues with the latter, cut N paste surgery than with the lapro... surgery was at 7 AM, I was up walking (with the assistance of two brave nurses) at noon. My surgeon advised to get mobile as soon as possible... so from the 1st walk, I'd walk every couple of hours, and try to go a bit further each time. I was out of the hospital in 5 days, and I cared for myself solo. I had a much easier recovery/recoup period despite being cut from groin to belly button.
So, if folks tell you that getting mobile is the way to go, I'd have to echo that advice. It worked wonders for me..

 

[Lewby437]

Thanks for the replies!

My surgery was on Monday evening and it was, as you put it, a "good old fashioned one"! I have a nice scar from above my belly button right down to my groin. They couldn't do keyhole surgery because of the positioning of the abscess which was unfortunate, but it seems to have been a success so far.

I was in ICU for a couple of days after and any form of movement, even just shifting my weight slightly was agony. In the last few days I've been more mobile and have been able to walk around the ward, though my abdomen hurts a lot more when I stand up, and I also have some difficulty breathing in deeply when standing too. Lying and sitting have become relatively comfortable though my scar still aches a lot at night.

As for eating and drinking, I've been able to keep everything they've given me down which is a good sign. I started on fluids such as juice, jelly and water and now I've progressed to being able to eat almost anything. They do recommend avoiding foods such as raw vegetables and fruit as these are harder to break down and my small bowel will be thinner in some places where they had to staple it together.

Bowel movements have been the most annoying experience; for the entire second day post-op I would constantly have an urgent feeling to go when lying in bed, but when I finally got up to go to the bathroom I would sit there for an hour and nothing would happen. Slowly they are becoming more regular though still very runny. The most uncomfortable parts are when the food is passing through and just kind of sits there as my muscles haven't regained full functionality then. I feel very bloated for a while until suddenly everything just kind of drops. I'm sure you all know the feeling well!

I'm off the IV completely now, taking a cocktail of painkillers and anti-inflammation pills, and they are hoping to get me onto Infliximab in the next 6 weeks, once the risk of post-op infection passes.

At this stage they are predicting I'll be able to head home on Sunday, though I'll be staying with my parents for a week or so until I feel well enough to head back to my place. I'm itching to get home so I can record my parts for some new demos my house mate and I are working on! It's killing me not being able to hold my bass haha.

Sorry for the long-winded post; been pretty boring couped up in here all the time! Looking forward to getting some fresh air and sunshine this evening

 

[Crohn's gal since 1989]

I didn't have my first BM till I had been home two days, so basically a week post op.

 

[ronroush7]

When you get home, make sure for the first fee weeks that you don't lift over twenty pounds. Don't eat any heavy meals. Try to get up very soon after the surgery.

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[ronroush7]

It took long enough after the surgery before I had a bm that they ran a test on me.

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[Lewby437]

I didn't have my first BM till I had been home two days, so basically a week post op.

Ouch, that must have been very uncomfortable! I guess I'm lucky then that mine happened so quickly... Were you eating a lot though? I've been starving constantly and eat everything they bring me, even though it all takes ages to pass through.

 

[Crohn's gal since 1989]

I went in with an obstruction, so they decided to do my resection immediately. I was on a triage list for surgery and I got bumped 3 times so for 4 days I was either no food or clear fluids. After surgery 2 days full fluid then 3 days regular food. I didn't really have anything in my stomach. Excruciating gas pains though.

 

[Lewby437]

Ah ok, yeah I had an abscess which had caused an obstruction. They gave me the prep to clean me out the day before the surgery and it just made me vomit everything back up. Some of it must have got through though because it started working about 4 hours later though they still had to give me two enemas the day of the operation...

It seems I have been extra lucky, I was only in hospital for 2 days before surgery!

 

[ronroush7]

I developed pancreaitis which made them move the surgery up a week.

 

[Lewby437]

Just an update, I've been having some very uncomfortable feelings the last day or so. I'm almost a week out of surgery and my whole gut area feels very bloated and swollen. I haven't felt like I've needed a bowel movement in ages but I've been really hungry at the same time. I'm scared that I'm putting too much food in and it's all just sitting in there. My right side is especially sore and it feels like something is pressing on something else. I haven't had much sleep and my head feels all foggy, and there's an odd feeling in my mouth and throat which causes it to sting when I eat or drink anything. Inhaling deeply is very difficult. Anyone else experience anything like this?

 

[Kev]

I'd forgotten about the restrictions on lifting... and at the time I lived in a 3 story house, so the stairs were an issue. I tried to restrict myself to one floor whenever possible. The worst part was getting in/out of bed... my sons had grown and gone by that time, so I used one of their twin beds, and installed a bathtub handrail in the wall next to it. I kept a roll of plastic wrap in the bathroom, and when I couldn't stand it any longer, I wrapped my incision with plastic wrap and showered carefully. I didn't have any issue with my 1st BM, although I was scared of what it would involve. But there wasn't any issue. The only issue I had was that they'd taken me off the morphine before they took out my catheter... that is just WRONG. I felt... well, it was more painfull than anything else, and the discomfort from it lasted a long time afterwards. But, other than those little issues, it was a relatively easy experience. Now, my lapro surgery, totally different kettle of fish... my sides, ribs, wellll, everything... hurt for extended periods... and the gas pains... apparently they inflate your abdomen with inert hospital gas.. blow you up like a balloon so they can work inside the tent... and that is where the pain issues stem from. Though the incisions were minor... really tiny in comparison... mine leaked for weeks afterwards... I had to resort to covering the areas around the 5 little incisions with oversized feminine products... and what discharged out of those was... obnoxious.
Soooooo, if asked, (and mine is probably a biased opinion) I would recommend doing it the old fashioned way over lapro any day... because although the surgical scars are tiny, the pain and issues... well, it felt like the heavyweight champ had used my belly as a punching bag... and the drainage... I was convinced I had some secondary sort of infection going on.

The only issues I have today from those surgical ventures are... I'm... I guess ashamed is too strong a term... embarrassed ... very embarrassed.. by my surgical scars (I think I see it as a badge of my illness.. I'm no psychiatrist) AND the surgeons/surgery left my belly button too small. I don't know why they just don't cut it out completely and be done with it. Oh, and before I forget... for the 1st little while, try to avoid sneezing and laughter...

 

[AJC - Australia]

hey mate…..no hurry to eat loats and try and put the weight back on….

You are a new person - you might just change a bit and get on the good foot and leave the crohns behind for a while, that is my wish for you…..for a really relaxing transition from hospital to home life, with lots of support, good friends, good home cooked food full of nutrition, loads of yummy soups and good drinking water…..some laughter and gentle movements leading to exercise.

take it easy for at least 6 weeks. even if you feel chipper.
careful not to stretch too much, just ease into it.
Your tummy will feel tender for 6 months, when tweaking it…that is normal.

abnormal is fevers etc.
expect your guts to take a fair few weeks to get back into a rhythm.
expect runny poos for a while until your body recovers.

good luck young man.

 

[ronroush7]

I still had some problems with my stomach a couple of months after the surgery. My doctor wanted to send me to a specialist a couple of hours away. My stomach calmed down after a while.

 

[Lewby437]

Thanks guys, that made me feel much better about it all! I think I might revert back to a more liquid diet for a day or so; I'm quite backed up at the moment... I think it has to do with all these medications too, I have 2 oxycontin a day, endone every 3 hours if I need it, panadol and tramadol 3 times a day and then my prednisolone and anti-coagulants! I'm building a tower out of all the little pill cups they give me.

The most annoying part is just not being able to sit or lie comfortably in any position but I know that's pretty normal. I keep having to remind myself that I've just been cut open and had all my insides jumbled around!

 

[Crohn's gal since 1989]

A lot of the pain killers constipate...I know just kind of adds insult to injury. For the first week or so home I had to take stool softeners (Colace) to keep things moving.

 

[Lewby437]

Update: They discharged me from the hospital today! I'm back with my parents for a week or so while I continue to recover so they can keep an eye on me and let me tell you, I'm looking forward to being cooked for and just generally fawned over! I still have some pain in my guts when the painkillers start to wear off but I'm able to walk around fairly freely and bowel movements, though still loose, are regular and don't cause much discomfort. They took the dressing off my wound and I have a gnarly scar, it's pretty rock 'n' roll haha! It's all looking clean and healthy though, so fingers crossed I continue down this path towards speedy recovery. Spent some time lying in the sun this afternoon, the fresh air and sunlight felt amazing after not having been outside for a week.

 

[ronroush7]

Wish you the best.

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[AJC - Australia]

what? sunshine in Melbourne?? never! Good luck with the recovery - weeks + hopefully months of readjusting the life compass. best wishes. from northern nsw

 

[Lewby437]

Feeling much better today, my band released the EP we've been working on for a few months that was delayed because of my sickness. I may have done a bit too much today, even though I was mainly just sitting at home because I'm feeling very tired and a bit foggy, so I think I'd better get some rest. If you guys would like to check out a fellow Crohnie's creative output I can post a link but I won't unless asked; not sure what the rules are on shameless self-promotion here!

 

[AJC - Australia]

i will have a listen - as long as it isnt rap or death metal! Luke Escombe, you heard of him? He is Australian too and making some great music.. has crohns….his track 'master key' is about IBD….very funny guy……and does some great work raising awareness about crowns and IBD.

 

[Hisenberg]

Was in hospital 12 days after my op. Had the the operation on a Friday and no BM till the Thursday. Kept vomiting in the meantime so had to get a tube up my nose to clear the bile in my stomach. Wasn't able to eat for 8 days. Was a fairly horrific experience looking back

 

[ronroush7]

Feel well.

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[Lewby437]

I'll have a listen to Luke Escombe now! You can listen to mine here https://whos-this.bandcamp.com

@Hisenberg, oh wow that's horrible Hopefully you recovered well eventually? Do you still have any issues brought on by the surgery?

 

[AJC - Australia]

sounds like a paralytic ilius? Not sure what the spelling is Hisenberg…i had a similar thing, the intestines were asleep after surgery…….the nurses fed me before i had farted and the following few weeks were some of the worst memories i have. Had you eaten after the surgery and is that why you vomitted? I had eaten (2 days after surgery) and the fodd just stayed in my stomach….then, after 24 hours sat in my stomach because the intestines were not awake yet, the food came back up and it was putrid……they forgot to drain the remaining rotten food from my stomach and the intestines started working at that point in time, so the remaining rotten food went through my recently resected gut….i got a very bad infection in the intestine surgery site that went right out to the perineum, i had puss oozing out of my surgery scar, and couldnt eat for a month…….i got down to 45 kg….and that was one of the lowest points in my life. I was 23.

 

[AJC - Australia]

lewis - you sent the ep to Sarah Howells at JJJ? if not, i can drop her a line for you...

 

[Lewby437]

Oh man, if you could that would be amazing!

 

[AJC - Australia]

hey mate, i sent it to her on Facebook - but she hasnt written back yet….i dont know her that well, only seen her like a dozen times in my life, usually at some musicians house or a gig. It sounds pretty alright to me, but i am no expert. good luck.

 

[Lewby437]

Thanks!

I have another question RE my scar... I just noticed a small amount of clear stuff oozing from a small area of it, and that area is red and puffy... Is this just a normal part of the healing process or should I go see my doctor about it?

 

[Crohn's gal since 1989]

You wil get lots of drainage from your incision. I really didn't have much until the staples were removed. Drainage is fine unless it stinks. I'm still on sick leave because my incision reopened once the staples were removed and I have nurses who come clean and repack my wound every 2 days. The surgeon said that often the top layer of skin will fuse together even though the other layers of tissue below have not healed. This can lead to an abscess. The nurses pack my wound to ensure that I am healing from the bottom up.

 

[AJC - Australia]

sounds normal.

 

[hingrum]

In my experience the oozing is normal! It ruined a shirt or two of mine

I have had three resections, all the "old fashion way"

 

[Lewby437]

Cool! Yeah, it stopped now and is starting to scab over

 

[ronroush7]

I would ask your doctor about it.

 

[Lewby437]

Making an appointment with the surgeon on Monday as soon as he gets back from holidays. Been really tired today and feeling super out of it. Putting it down to the painkillers, I started shaking and all muscles began aching when it was getting close to the time I usually take my OxyContin, I fear my body's beginning to get used to it too much... I really want to get off them soon. I also swallowed some water the wrong way this afternoon and had an insane coughing fit that caused some pretty gnarly pain in my gut. Biggest workout my core has had in weeks. It still kind of hurts a bit from it.

 

[Crohn's gal since 1989]

After my surgery I was given hydromorphone and Tylenol. I gradually reduced the H, and increased my use of T until now where I only take T 1-2 times a day. I'd be very careful with the oxy though.

 

[Lewby437]

Yeah they had me on 8 Pandaol, 4 tramadol and 2x10mg OxyContin a day. I've managed to cut out 4 panadol and 2 tramadol and in the next few days I'm going to cut one of the Oxy too. I hope in the next 2 weeks I can stop taking them all completely.