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Feelings & sensations - 12 weeks post-op (ileostomy)  

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Mimi
 Mimi
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July 9, 2020 12:33 pm  

Hello fellow ostomates

I wonder if you can help me? I am trying to understand if what I am experiencing fairly 'normal' or not, and also to manage my expectations.

I have a number of uncomfortable sensations which I am still experiencing - and I mentioned these to the surgeon and asked are these a likely result of the surgery, and was told - I don't know. The things I am feeling are:

  1. The abdominal area around the stoma still feels tender and sore, - in one or two places, if I press on the tummy it hurts.
  2. I get occasional shooting pains from the nethers upwards
  3. I get occasional muscle/nerve spasms
  4. My pelvic area (on the side of the ostomy) is sore
  5. My abdominal muscles are still quite weak, I think, and I need to use my arms to sit up from lying on my back (I think I pulled some muscles in the night when I wasn't sleeping well and moved around a lot)

I have put this down to the healing process, muscles take a while and nerves take a long while - that open abdominal surgery will cause a lot of damage and this will take time to heal. But I am not sure if this is so.

I'm also not sure what support (if any) to wear and when (perhaps this is a separate thread?). Do people wear support garments - vests/etc., for everyday - say walking / gardening / housework? Or for more strenuous activities? Or not at all? How to decide if necessary? I've not got much help/guidance on this from nurses etc.

A lot of questions - and I have more, for a separate thread. Many thanks and best wishes.


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john68
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July 9, 2020 12:53 pm  

Hi Mimi, I can only go my own experience, it major surgery and I would say all you describe is normal. Cut nervous and a surgeon working inside you like looking for something in a shopping bag. As long as there are no lumps or signs of a hernia. Be careful of lifting or pulling for the first months. I wore loose clothes until I healed. I wouldn’t advise any device or guard soon after surgery 


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dogtalkerer
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July 9, 2020 1:16 pm  

the support you require should come from a physical exam , your age,body condition and general fitness needs to be taken in account.  I'm 57yr old, pretty fit , colostomy, only wear bib overalls for protection, shirt when mountain bikiing, nothing special cross country skiing, wetsuit or life jacket while kayaking.


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SqueakyandLiza
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July 9, 2020 3:00 pm  
Posted by: @mimi

My abdominal muscles are still quite weak, I think, and I need to use my arms to sit up from lying on my back (I think I pulled some muscles in the night when I wasn't sleeping well and moved around a lot)

 

Hi Mimi,

i can definitely reply to number 5.  This is something that I certainly experienced. My abs were basically useless when I first got home from the hospital. I had a physical therapist coming 3 times a week for a least a month. I could not do anything for myself. I couldn’t get out of a chair and could barely even lift my foot while sitting. And bed was crazy. I could sit on the bed and let my upper half fall to a prone position, but needed someone to lift my legs up to the bed. And needed someone to basically lift me back to a sitting position to get back out of bed. That lasted at least a couple months. Then we ordered a bed rail on Amazon that made it possible for me to get out of bed myself. To be honest, it is still there 2 years later. I could get out of bed without it but this makes it much easier. 

What the doctor kept reminding me was they had cut through my abdominal muscles and they take time to heal. And they are a lot better. Still probably not back to where they were before though. 

Hang in there Mimi!!  It will get better!!


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rosepritchard
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July 9, 2020 5:13 pm  

Hi Mimi

I’m now six months down the line after my surgery, and things definitely do change for the better, albeit slowly. I also was sore and tender around the stoma for three or four months but that’s settled down now and the whole area feels much more as it used to. I faithfully did the recommended abdomen exercises - for a while at least! - but found that once I started walking again that in itself helped strengthen my stomach muscles, particularly as I use walking/trekking poles which help no end in maintaining posture and balance. I was told that it could take up to a year for the muscles and other internal bits to heal, so it’s a slow process - but you will get there. 

As for support - I wear light control underwear all the time. It’s more comfortable as my bag stays in place and doesn’t move around or start pulling the skin when it starts to get full. If I’m going to be out walking or on my feet for any length of time I’ll wear firmer control underwear to give that extra support. I haven’t tried wraps as so far the control underwear seems to do the job, but I know they’re a popular solution as well. I don’t have a hernia so at least I haven’t got that to deal with.

I’m three months ahead of you and last three months have seen a big improvement in everything really so hang on in there - things really will get better!

Take care now.


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ChrisandBagpus
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July 10, 2020 8:20 am  

Hi

I reckon we can all subscribe to your full list in the first few months

Remember the surgeon has cut, sliced, stretched and had a general rummage around. They've saved your life and feel they've done a good job. sorry to say but your are going to get  the shrug and I don't know what to say from the experts because most of them don't live with a stoma every day and night.

This is why this forum is such a good resource of information. there are plenty of products out there a lot aren't in my option that well design there are however so excellent products its navigating what works for you. stealth belts might help with activities.

I'm still looking for good info on the best yoga, Tai Chi etc exercises for early post operative recuperation. If you find any please share I at least would be interested

We are in tour de France season so I'm going to give you a mantra from that sport--"When the going gets tough, the tough gets going".

Chris and Bagpus


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Mimi
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July 10, 2020 1:13 pm  

Thank you everyone - lots of really helpful info, and thank you for sharing your experiences.

Posted by: @john68

As long as there are no lumps or signs of a hernia.

I honestly couldn't be sure one way of the other. When the surgeon examined me and found a sore bit he said he thought it was muscle, but it might be a hernia, but that didn't matter anyway. I do think I might have overdone things a bit - I was potting up plants week 2 post-surgery. (Small plants, on a potting bench, but quite a lot of movement).

Posted by: @dogtalkerer

the support you require should come from a physical exam , your age,body condition and general fitness needs to be taken in account.

I agree this would be ideal. However given the timing of this, I have not had any physical examination, until 12 weeks - to look at the scar. I would love a physical check, and someone I could ask questions of. Hopefully this will not be too long - now pubs are open in the UK.

Posted by: @squeakyandliza

What the doctor kept reminding me was they had cut through my abdominal muscles and they take time to heal.

Thank you - I need to remember this. I was pretty much left to my own devices with exercise etc., and I have done my best around this, but would have loved some exercises from the hospital/doctor. Each time I asked I was told to 'listen to my body' and 'do as much as I felt' - which I'm not sure was the best advice for someone like me - a born fidget who can't sit still for two minutes at a time.

Posted by: @rosepritchard

I’m three months ahead of you and last three months have seen a big improvement in everything really so hang on in there - things really will get better!

Thank you - that is so good to hear . . . I think I thought I would've been back to normal by now, and I have been given myself a hard-time - about how sore I'm still feeling, and how weak my tummy muscles feel. I'll be more patient.

Posted by: @chrisandbagpus

I'm still looking for good info on the best yoga, Tai Chi etc exercises for early post operative recuperation.

I haven't found any specific yoga or tai chi exercises. Although I have found Sarah Russell's book, The Bowel Cancer Recovery Toolkit, https://www.sarah-russell.co.uk/my-book really helpful - I wish I'd had it when I came out of hospital, but glad I came across it when I did.

I have been exploring QiGong, for the first time, because I was missing yoga (I have now started some standing poses, as well as cat / cow poses). I found on YouTube a 20 minute sequence that worked for me, and there is no speaking which means I quite like. Not all of the exercises are ideal immediately post surgery, but sitting watching with attention the ones you don't do can be beneficial - I've found it relaxing.

Best wishes and thanks everyone. Such a friendly, helpful community. I'm so glad I found you.


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