Post sugery recovery advice

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amssgirl

amssgirl

Joined
Aug 1, 2011
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Hi all, my boyfriend is going in for surgery in mid-September to remove his Terminal Ileum. It came as a bit of a surprise, since we weren't expecting the surgery to happen until closer to December. I think the surgeon wants to take the minimally invasive surgery route, and it sounds like he is removing inches though I am not totally sure. The doctors estimate total recovery time will be about 6 weeks, give or take.

For anyone that has had surgery, or this type of surgery, I am hoping for some general advice. What was the recovery like, was it somewhat close to the estimated recovery time? Did you do anything or receive any tips that eased the recovery process?

I've read in other threads with some surgeries you will never be able to eat certain (especially fibrous) foods again, so I am wondering if you have any take on that. We've talked about going out again and doing tons of different things when he fully recovers (our to-do list is growing by the day!) but a lot of it includes trying different foods which includes a lot of said fibrous veggies.

So I'm looking for all types of advice for post-surgery life and recovery. Any advice is appreciated. Thanks!
 
Hi there, I have had two resections but my first was laproscopic, and I was a lot younger then. ;). Because it will be a smaller incision they sometimes themselves dont know exactly how much to take out til the get there. For the most part some as for epidurals but they dont work for me, but as I recall the first one was pretty good. I didnt have any issues with food but then again I was oblivious to the disease and there wasnt much info about it or computers, thank God for most of you, we can help.

Just what I would think is to start off slow.. start with Ensure a couple of days to get nutrients, then applesauce, mashed potato, see how he feels, and smaller meals but more often will help ease any bloating. He may have some D, but applesauce will help that. Bananas are great, and get him not to drink and eat at the same time, it causes gas and bloat. Walking around as soon as he is able is crucial, helps get the gas out and get things moving. It also helps to chew very well.

Just some thought, and rice is good too. Then if he is able to eat without discomfort then he could eat more like meat and such. Good luck, December seems so far away. In the meantime hopefully he will keep infections to a minimum.

My surgeon had me go in a week early and on Flagyl and cipro to make sure there was no infection brewing...then the surgery and a week after of Flaygl then Entocort when I got and low dose for 7 years. Let us know when he goes.
 
I had that surgery last year and it all went well. I was up and about (slowly!!) the next day and able to eat. I was on a low residue diet for 6 weeks and then it was just trial and error after that, I can now tolerate most things including fibre no probs. I do get the odd dodgy tummy and cramps were a problem post surgery but have become less and less although now and again can still be strong but don't last long.

The 1st week was the hardest due to the gas I had painful shoulders due to it and it was difficult sleeping I also didn't have a BM for a week!! I walked and walked then walked somemore it is really important. After a out 2 weeks there was a turn around and I felt much better and I prob felt back to normal within about 5 weeks although still a wee bit tired

10 months now and I feel great, occasional mild grumble at the surgery site but all in all great and in remission with no meds.

Good luck and it really was the best thing I did.
 
i had about 12 inches of my terminal ileum removed in 2000. i was pretty much asleep for 24 hrs after the op. i could eat within 48hrs, discharged after 10 days and back to work 8 weeks later. have been fine since, just the odd day with loose bms, mainly due to things i shouldnt eat. i hope all goes well with the op and life gets back to some normality. xx
 
Good luck to your BF on the surgery! If he is having it lapro, the recovery time will be a lot shorter than an open incision. But either way, it still takes a lot out of you and it can be weeks to months before he gets his energy back.

Pen gives great advice above about starting slowly with food and then building up adding things slowly over time. Take it slow. And chew. Chew, chew, chew. Like thirty times a bite. You can't chew enough. I had to learn that the hard way!

Good luck!! - Amy
 
Hi everyone, thank you for all your advice! Surgery date has come and gone, and as far as the doctors are concerned, so far things are looking very positive. He's got a sizable scar down his tummy (with what looks like staples holding the cut together), so I am assuming laproscopic-however-you-spell-it was not done here, though I could be wrong?

At this point, he's just excited to start thinking about eating more solid foods again (and looking out for the cute nurses on the floor haha). Though one thing nobody really thought of was how tired his arms and shoulders are at the moment, he's been using them way more to climb in and out of bed...not that great when he lost a lot of weight and presumably muscle mass.

Here's hoping for a smooth recovery.
 
Thanks for the update!

Fab to hear that all went well. :)

No, you're right. With what you are describing it was definitely open surgery.

Sending loads of luck your way that your bf has a smooth and speedy recovery!...:goodluck:

Dusty. xxx
 
Maybe the arm workouts will build him some of the muscle mass he lost. It's possible he had "laparoscopic with hand assist." This is what I had. Does he have any other incisions? I think this allowed them to make a smaller cut than usual (as well as two laparoscopic cuts), but there's still a bigger cut (mine was probably about 5", but luckily my surgeon had small hands!).

Glad to hear the surgery went well.
 
Hi diesanduhr, that is a possibility. While showing off his "battle scars" (as I call them), I did notice he seemed to have a few other round holes granted they were covered by a bandage so I couldn't see what they were as well as I wanted to (and I chickened out and didn't really ask...)

But perhaps that is exactly what he had too. :)
 
It's not like it's super important, it's just interesting to hear about the experiences of others/the choices their care providers make.

Anyhoo, I hope he recovers quickly and the surgery has him feeling good soon.
 
Thanks your support everyone. I hate to keep dragging a thread on, but I'm not sure where else to put this.

Long story short, boyfriend went home Saturday morning and everything was fine. He seemed to be getting better every day and we were planning on going out on Saturday (he was waiting for me to finish my exams).

Today, exams are done (butchered...so my career may be over as I know it...hope I'm being over-dramatic), and after they are done I find out from his mom that he went back into the hospital last night because he had been vomiting again...they just didn't want to disturb me because they knew I had exams. :(

From what I know the first surgeon somehow didn't do a good job reattaching his intestines and there was some blood and leakage built up in his abs? He had to go through another round of surgery to remove all that buildup, so he'll be in the hospital again for another week. If there is a bright lining to this story is that we were told the doctors had a good look around when he was in surgery, and they didn't see any active Crohn's :)

So now I just feel so angry and helpless and I feel like I want to punch a hole in the wall. He has only been out of the hospital for a week, and now he's back in. He's supposed to be at home recovering and getting stronger every day but now he's got to go through the recovering process all over again, and (I'm not sure how), but the doctors say they'll get him to take things even slower now.

Sorry about the rant, I just needed somewhere to vent a bit.
 
I'm so sorry to hear this hun...:hug:

I don't know if the surgeon is to blame or not but unfortunately this can be a complication of surgery and it does happen. I know it is hard to look on the bright side when you have been dealt a blow like this but he is with you and recovering again and that is the main thing, it could have been so much worse and I am so happy for you that it wasn't.

He is young and he will get over this and be better than ever. My son has recently had surgery and the beginning of week 4 post op was the turning point for him, both physically and mentally and I think you will be surprised a few months from now at just how well he does look. The wait will be worth it, believe you me. :)

Good luck with your results hun! I will have everything crossed for you!...:goodluck:

Dusty. :heart:
 
I'm sorry to hear about the complications. It is good to hear no active Crohn's though!

I'm sure you didn't "butcher" your exams or ruin your career. Try to find some stress relief that leaves the walls intact. Venting is good, don't pent it up!

*big hug*
 
Mine was 6 inch vertical incision (20 staples), week in hospital, 2 wks home, then went back to work (desk job). Incision was healing fine...felt ok to do computer work.
4 wks after surgery had an infection that started from the inside (they re-open 1 inch long section - packing dressing twice a day), now 2 other shallow sections are open.

Now 8 weeks after surgery I have at least another 4 weeks to "heal"...that is if there is not another infection!

No one tells you this, but, an inch or so below the staples, they stitch you up. They have to tie knots along the way of sewing you up. All those knots have a very good chance of causing infections. They don't absorb readily. Those infections require a re-open to assist in healing that area from inside out. Its all so frustrating!

This is not a scare - just a reality. Its nice to be closed up (staples), but post surgury complications are normal. Not yours, yours was very bad, re-surgery bad!

I wanted you to know that no one knows what will happen nor how long. He could fly threw recovery with zero issues...or could experience complications 4 weeks after surgery! Its a long haul experience - hang in there!

Thats why I joined this forum - to get info from real people.

Knowledge reduces the unknown which in turn reduces anxiety/stress/worry.
 
Hope your boyfriend is doing better after 2nd surgery...one is enough for anyone!

Helpful hint to getting out of those horible hospital beds...and home beds.

If getting out of left side of bed, 1st bend knees (slowly to a comfortable position, feet on bed), put left hand under left thigh right at the knee. Then as he drops his feet over the side of the bed, he can use his left elbow on the bed for support (and to assist in pushing himself up) and right hand on bed for support (and to push himself upright) to roll and sit upright on side of bed as his feet drop to floor.

I found it very painful to go from lying down in bed to sitting up on side of bed...the above helped...hurt less...

I guess there are different muscles doing different thing while the body is in different positions - go figure!

Good luck!
 
Thanks everyone. Just got my exam results back on Friday. I passed! I have no idea how I pulled that one off, but I'm not going to question it (for fear of jinxing the results).

Thanks for the advise Dave on how to get in and out of bed. I think he's found his own way in the past few days that he can get in and out without much trouble. Before that he would have to grab my arms (or someone else's arms) and we would have to pull him up so he wouldn't use his abs.

Thanks Dusty, I feel like more and more I have to tell myself to wait until that "turnaround" point as you say. I can feel his frustration because they keep pushing back his potential release date (that's what it feels like anyhow), although a part of me is glad to see the docs seem to be keeping a closer eye on him.

It's a lot of guilt on my part too. I'm starting to feel more angry and frustrated yet I feel like I have nobody to talk to, because: a) what am I going to say, and b) why do I have a right to feel this way, I'm perfectly healthy for the most part. And just feeling guilty because I feel angry over seemingly little things, like how he has to stay in the hospital for Thanksgiving (Canadian thanksgiving up here), and not celebrate it at home like I had hoped so much for him.

I think I'm ranting again, my apologies.
 
Amssgirl, the guilt you are dealing with is normal for someone in your position. Give yourself a break, you are quite helpless in this situation. Remember that your love and support are more valuable than gold right now, and your BF is lucky to have you at his bedside. That is the best you can do, and you are doing it.

Also, you have those of us here to talk to. I have only been on the forum a few days, and have busted at the seams with posts! Thanks to the poor fools here... *poke* who have to deal with this monster as we do.

Of course you have the right to feel the way you do, why wouldn't you? You are in a very tough situation right now, and your support speaks volumes of your character! Regardless of your health, this is about caring for your loved one. Which is a tough road to travel.

Keep doing what you are doing by your BF. He really needs you right now.

Take care.
 
Congrats on passing! I knew you would. :)

Don't feel bad for being angry. That's a perfectly normal response. Let yourself feel whatever you need to (and feel free to come here and vent). Letting it out will make it easier to be there for support. You are so wonderful to take care of him and worry about him the way you do. Just know that he will be out of the hospital at some point, and you can both move on and heal. I know it seems like forever from now, but stay strong, you'll get there.
 
hello

I am also here for my loved one. My husband just had surgery last Friday.
I love all the helpful advice and stories.
I do have an additional question for everyone.

After you got home from the hospital, how long did you need someone home with you?
My husband seems to be having a harder time than I thought. And I feel like I should be at home with him.
 
Hi and thanks to Slim, dies, and SS410.

He's still in the hospital (I think it's over two weeks by now). He was "supposed" to go home after Thanksgiving, but he got an infection around the surgery site (common I think, but no less frustrating), so the doctors are keeping him here until the weekend I think. But the good news is he seems to be on the mend, white blood cell counts are good, hemoglobin is good, :)

Hi SS410, all the best to your husband's recovery. I don't have firsthand knowledge no this, but I think it's probably a good idea to have someone there at least the first week afterwards. My bf had his mom come and stay with him for the week in between and I personally think that really helped. I would recommend that for anyone who has had surgery, but that is my opinion.
 
Update for anyone that keeps up with this post (I realize it's getting a bit old...)
Whew, I feel like it has been a saga of a story.
Bf finally went home on Friday, I believe it was the 21st of October. As far as we know he's still got some "stuff" inside of him that is slowly draining out of him, but the doctors felt like he was well enough to go home.

I say it feels like a saga of a story because it seemed like every time they gave him an estimated home date, something else would happen. And from the bits and pieces I heard, man, you could almost find the series of events out of a Hollywood script. I think the thing that still irks me is (what I can only sum up as) doctor incompetence. I think that really led to the majority of his infections, his pain (as his family put it, I really don't think you're supposed to be doubled over in pain, white as a ghost after surgery and told that "walking it off" will do the trick) and his overall frustration at having to stay so long in the hospital.

But now things are looking good :) He has been back at home for a couple of weeks and back to work for just over one week now and so far everything looks good. He still gets worn out quite easily with things like grocery shopping but I'm hopeful things can only get better from this point on.
 
Wow, sometimes I think these surgeons overestimate how much we can do right after they cut up our abdominal muscles. No one should be told to "walk off the pain" when they're so pale they're about to pass out.

I'm glad to hear your boyfriend is finally on the mend, he's lucky to have people like you who are helping and looking out for him! Good luck to you both!
 
sounds like he's really been through it

I think I had around 35 staples in after my surgery, and thankfully there were no complications. It was a long recovery though, I think it was about 8 weeks after being released from hospital that I started back at work full time. I went back at the 6 week mark, but at very reduced hours (basically as and when I wanted) until I felt up to it.

He's got you and you obviously care deeply about him which will help him get through this as much (if not more than) as any meds
 
I think it's normal to be worn out by grocery shopping at this point. I'm so sorry for what you have both been through and the incompetence you have dealt with, but I hope from this point on he continues to improve.
 
SarahAnne, I agree. For all the years I have been going out with him, he has never ever been doubled over white as a ghost in pain, he's been in pain but I've never even seen him scrunch up his face in pain. I know he has a good pain tolerance level, so to have him like that, we all knew it was a sign that something was not right.

Thanks for your concern rdsoxfan. So far he's doing okay; the biggest thing we have both noticed is definitely his drastically decreased energy level. But frustrated because the "stuff" is still draining and not as fast as the doctors have thought. They just put in a new drain this week so we're all crossing our fingers hoping this will be what he needs.
 

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