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Posted 1/29/2011 4:09 PM (GMT 0)
My daughter had a resection operation 9 days ago, She was discharged from hospital this Thursday with all her meds and 40 sips energy drinks.  We were giving a diet plan by the dietian to introduce foods slowly and basically build her up slowly as she has lost 2 and half stone in weight.  I was feeling really positive that at last she was on the road to recovery and many years of good health.  Wrong !  she has zero energy exactly as she has been for 18 months prior to a diagnosis.  What I want to know is this normal ??  Is it just down to her tiny body having just had surgery and massive trama or is the CD active again so soon ???  She is in no pain as such just sore ans achey from the op. Its just the energy she just sleeps and lays down,  walking from the lounge to the kitchen is a strain.  Was I just being naive in thinking we were finally going to get a life ?

Any advice please im so anxious cry

xxxx

Posted 1/29/2011 4:17 PM (GMT 0)
Mom whoa slow down!! Poor baby just had major surgery, she is going to get fatigued VERY easily for quite awhile. While it takes approximately 6 weeks to recover from the surgery, it will take a full year to totally recover.

You will get a life again, but allow her to recover first. These surgeries kick our butts. What might take a normal person no time at all to recover from a surgery, for a person with Crohns everything takes a little longer. For example, if my very healthy husband gets the flu, he is over it in no time. But if I get it, it takes me much longer to recover.

So she is home now and doing the best she can. Have her try to walk a little bit everyday. But don't expect her to bounce back just like that. Its going to take some time. Hugs!
Posted 1/29/2011 4:38 PM (GMT 0)
Phew .............. Thanks Nanners so you dont think she is getting ill again ? JUst feel helpless watching her .

Hugs greatly recieved at the moment
:-)

xxx
Posted 1/29/2011 5:01 PM (GMT 0)
omg, yes like nanners said she will be on the road, give it time. esp. if she had open surgery. lap isn't as bad, she is on the road, I'll wager. here is my prediction. 3 months from now you guys are going to so thrilled, just stay on med's, don't go off, maintainenance is so important.

Posted 1/29/2011 5:17 PM (GMT 0)
Like everyone else said, it takes time. I had laprascopic surgery and it took me 4 weeks to be back at work, although I was feeling normalish after about 2. It varies person to person though, but I wouldn't be worried about her getting sick unless she is having a lot of pain, not able to keep down foods, etc. Keep in mind that a resection is a major surgery, so it isn't like she would just wake up and be back to her normal self. And like Artist Guy said, make sure she stays on meds. If her GI is anything like mine, he/she will want to do a scope 6 months from now to check and see how she is healing and if there are any signs of disease returning. Good luck to both of you!
Posted 1/29/2011 6:30 PM (GMT 0)
As others have said - give it time.

Since she was so sick before the surgery her body doesn't have the resources it needs to get better quickly from the surgery. PLUS she has to heal from the loss of physical resources caused by having uncontrolled CD for so long. And on top of that her body is still maturing and needs extra energy for that!

I would expect that she will be very weak for a while - perhaps as long as a month. Then suddenly she will perk up and have more of a sense of energy but still get tired very quickly and perhaps unpredictably. From then on she will gradually build her endurance up until she is able to do normal activities. A year to see a return to what will probably be her normal (many CDers have fatigue even when in full remission) would not surprise me.

Our oldest son had 17 surgeries by the time he was 16 and the older he got the harder the surgeries were on him. The recovery back to full health (for him) took maybe 3 times longer when he was 16 as it had when he was 10.

Making sure she has really solid nutrition will help her recover faster. I'd continue the dietician consults for quite some time as she probably will need extra calories for several months or longer and the dietician can guide her on how to get those in a balanced way. Continuing to drink nutrition drinks is one way a lot of CDers handle this.


I hope her recovery goes well and smoothly. Getting her to walk a short distance several times a day will help her. For now I think that would mean from bed to kitchen or family area and back again. In a week it might mean a short walk to the neighbors house - or not. She will have to listen to her body.

And if they didn't coach you or her on this, making sure she spends a few moments taking good strong breaths several times a day  - to the point that she's comfortable given that she just had belly surgery - will help to ward off lung problems like pneumonia while she's still spending most of her day resting/in bed.

Best wishes,

Patricia
Posted 1/29/2011 6:37 PM (GMT 0)
Hi there Mom. I totally get where you are right now! My husband was hospitalized in 2008 with crohn's and c-diff for about 6 weeks, and lost about 45 lbs and was weak, emaciated and in pain. He got on remicade and saw a difference, and I expected ok, now that he's responding to a medication, he'll be good within a week. Geez, was I wrong. With crohn's recovery takes a long time, with ups and down on the way.

I remember I was so stressed out tracking every bowel movement my hubby had after he came home from the hospital. Every bump on the road I thought the remicade was not working. And folks on here gave me advice - to track progress in weeks, not days. And sure enough, in about 3 months, my husband was visibly better. But day to day, the progress was very very small . . . so small that it felt like he wasn't really getting better. And in the meantime, the whole 3-6 months of his recovery, I felt on edge and anxious.

Since then, I've really had to learn to take a more positive and less anxious reaction to his illness. My husband is currently working his way through a flare-up, and of course I still expect to see him get better the next day, and I have to tell myself to check on this once a week, not every few hours.

It's hard to accept that, but that's the way it is. Healing for people with crohn's takes a long time. Keep a journal and track progress over the course of the week. Anything more granular, and you'll be more anxious than ever!

I hope your daughter has an uncomplicated recovery and a long lasting remission.

(((Hugs)))
PV
Posted 1/30/2011 12:49 AM (GMT 0)
My goodness, "mom", you're expecting miracles.  I've had 3 resections and the fact that your daughter is not in pain is great!  Give it till week 4, you'll see a big difference by then, but it takes a year to fully get over a major surgery, though I'd say you're 75% of the way there by week 4.  Encouraging walking and socializing, that's enough for now.  It took me 10 years to figure out that my insides were better behaved when I reduced the sugar content of my diet.  As soon as dietary restrictions allow I'd suggest trying to remove white sugar and all grains from the diet and see how that treats her.  Shockingly even with my short bowel and all the associated fast transit problems, it acts so much better without these foods.  She should introduce fibrous things slowly and definitely wait 6 weeks for all the swelling to reduce so that nothing gets stuck! 
Posted 1/30/2011 1:32 AM (GMT 0)
And with all of that being said, I understand completely your desire to have the ole spunk and sass back (no ill intent meant...something my Mom used to say). Mothers are like that. She'll come around, then you can breathe a sigh of relief. Don't panic. It's going to be ok, Mom. Just remember, the calmer you are, the calmer she'll be. She can't worry about you right now and how you're handling things. She has a lot of recovering to do, and she will. But I do understand a Mother's concern for her child. Bowel surgery is a hard row to hoe, and healing comes slowly but it does come. Hang in there, Mom, and keep posting.
Posted 1/30/2011 5:04 AM (GMT 0)
Just one more little bit of advice S Mum, on top of the good stuff others have posted,,,please take time to take care of yourself as well as your daughter. She needs you to help and she does not need you to be ill as well . Worry will get you down and it does no good at all so take stock of all the good things , change what you need to and let what you cant change go . Your smile and health will help your daughter a lot more than you can imagine .
Posted 1/30/2011 11:44 AM (GMT 0)
I agree with the others that you should not stress and should expect her recovery to take time.  Small steps.

I am having a resection on Tuesday, I have been told to expect my recovery to be 3 months.  I have been ill for quite some time with crohns and diveritculous,  Im having the surgery as I have a large abscess in my large bowel.

I like your daughter have been ill for some time and that alone takes it out of you so you dont go into surgery strong and at your best.

Give it a few more weeks and I am sure you will notice a difference.  I know how mums worry, my mum is 76 and still worrys like mad about me and Im 42

Posted 1/30/2011 12:33 PM (GMT 0)
Thanks everyone, much calmer today had a good chat with her and relayed all your advice so she seems much more positive today. I have even managed to talk her into a drive out and some fresh air :-) (thanks Patrica) it was particually nice to here from another mum Wondered how your son was doing right now as it sounds like he has had a really hard time ? Sorry to hear about your surgery littlemissmuffet will be thinking about you and keeping my fingers crossed it all goes well. And your right dosent matter how old you get Mums always worry comes with the job :-)

As always thanks guys you really brighten my day :-)


xxx
Posted 1/30/2011 6:29 PM (GMT 0)
hi mum :)

i'm on now, and i just wanted to say thankyou soooo much for being here these past few months i really couldnt have done it with out you! you've been there day after day fighting this disease with me...and it's been so hard for you too, but again thankyou you mean everything to me your a best friend as well as a mum i love you!

xxx
Posted 1/30/2011 6:37 PM (GMT 0)
Goodness, I'm having resection#2 and hysterectomy in two weeks and I sure hope no one expects me to bounce back in 9 days! lol

6-8 weeks is normal for healing, if there are no complications. Otherwise, I'd say give it about 3 months until you really see her doing well with energy, etc.

Hope she recovers well!
Posted 1/30/2011 6:43 PM (GMT 0)
Thank Roni, and hope everthing goes well for you xxx
Posted 1/31/2011 7:47 AM (GMT 0)
i have my own advice, be your own doctor and depend on no ne else but your instincts. When it comes t Crohns everyone has it differently. Some are allergic to dairy, some swam in the ocean and swalllowed a parasite perhaps, but at the end of the day, we all have it differently. The first thing I wondered about when diagnosed was, where I was at the time I started feeling ill. Try some aloe vera juice-maybe that would aid her. It cannot do harm. And she should write down when and how her pain comes and feels and what time of the day it is-even what she ate. A journal can help. I hope she will be doing better-she sounds like she has alot of love around her through this disease. THinking of you...
Posted 2/1/2011 5:03 AM (GMT 0)
Stressed mum, it's clear you are thinking about your daughter's well being nearly 24/7.  She is lucky to have you.

When stressed mum talked about getting a life, she used the word "we": clearly, this refers to both mother AND daughter. 

Post Edited (njmom) : 1/31/2011 10:27:58 PM (GMT-7)

Posted 2/1/2011 9:10 AM (GMT 0)
Hello,

wink  

So sad to hear your feeling like that, being a mum is hard at times especially when your baby has been unwell. Like your daughter I was 16 when I first had my resection, seeing your post brings back how I think my mum must have felt. I remember it took atleast two months for me to even get energy back, and my mum was shocked as I could sleep up to 20 hours out of the day. Then I went back to school part-time. Thankfully they diagnosed 2 long years after her symptoms appeared, I have known other CD sufferers to go 8 years, myself it took 5 years. My parents were at there wits end, they had no idea what to do, teachers thought they werent feeding me as I only weighed 38kgs, but I knew my arm was an extension to the fridge. Give her time, and the support your giving is exactley what she needs, there maybe days of tears, days of happiness, her body has been through a lot. (Big hugs) Take care and good luck

Posted 2/1/2011 9:31 AM (GMT 0)
Sorry mum have to say something else- My mum was my rock through that very 1st resection, and for the 2nd. Your doing a good job, however remember to take care of yourself also,as hard as it is, just try. You are important too.
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