What is normal after surgery and what isn't

[Suebedoo]

My husband had stoma surgery two weeks ago and got home a week later. Since coming home he seems to be deteriorating not improving. On the advice of his stoma nurse, we are going to see the GP to get bloods taken, etc this morning. However, is it normal to go off your food, be scared to eat in case it hurts, have problems regulating body temperature and to generally feel totally exhausted. My husband had open heart surgery four years ago and that was a breeze compared to this.

[MyStar86]

hi, I am so sorry to hear about your husband but unfortunately I can relate I had my ileostomy surgery at the end of October last year and I have only deteriorated since the surgery. I feel exactly the same I am so scared to at due to pain however I have been prescient liquid supplements as I am only around 40kg and 5ft 6in but it’s really hard to sustain any weight when all food just causes more pain. However on a more positive point it is normal to deteriorate initially post discharge and it’s also normal to have a high out put whilst the body adjusts to the new stoma and new way of digesting and processing food. Also in hospital I imagine he was on strong pain meds and now at home he isn’t getting the same relief also in hospital you are in a bed all day so you conserve more energy once home and you start moving around more it also stimulates the bowel and that can cause pain and increased output. The recovery from surgery can vary from person to person but it does take months to fully adjust my case is worst case scenarios the surgery has not solved my problem and I’m actually worse now than before as I was took weak going into the surgery but hopefully your husband will just take time to adjust to the stoma and slowly the body will calm down. It is major surgery and a shock to the body so 2 weeks is normal, however I would talk to the gp about liquid supplements to get the nutrients your husband needs to recover and heal such as vital 1.5kcal, fortisip and ensure shakes all of which contain 300 calories in only a 200ml bottle so not a large volume but all the goodness. I hope that helps a little xc

[Suebedoo in reply to MyStar86]

Hi - I am sorry to hear that you are still suffering. That must be really hard for you. I work with people who have disordered eating and see how easy it is to spiral into a fear of eating. I hope that you get the help you need. We will look into the liquid supplements - I believe the ones that were handed out to some of the patients in the hospital are available in Boots so I will take a look over the weekend. Thank you also for your reassurance. Hopefully you will both improve in time.

[MyStar86 in reply to Suebedoo]

You can also get the ensure shakes and fortisip shakes from Amazon or eBay but the vital 1.5kcal ones that I have can only be prescribed but the others are available and there are lots of different flavours so it’s worth trying them see what he likes best and then you can ask for a prescription as it’s very expensive to buy them yourself. I have 3x shakes a day via prescription which adds 900 calories and is a massive help, I would be dead without the shakes. Does your husband have an ileostomy or a colostomy stoma? Good luck I hope you are able to get hold of some shakes soon as he will need the bit and to heal especially protein that’s essential during recovery xx

[Suebedoo in reply to MyStar86]

Thanks - that is really helpful. My husband has an ileostomy stoma. It was intended for him to have a colostomy but they managed to do the ileostomy instead with a view to reversing it at some stage.

[MyStar86 in reply to Suebedoo]

That’s good at least my advice will be more relevant as I have an ileostomy and I don’t know much about the colostomy side but I do know it’s very different when it comes to diet etc.

If he is struggling he should have a stoma nurse contact that he can reach out to also there is the ileostomy association website which he might find helpful:

iasupport.org

Don’t feel you are alone in this there is so much support out there especially through the initial recovery xx

[OldTed60 in reply to Suebedoo]

I am 3 weeks post stoma surgery and have a rare systemic autoimmune disease which has caused slow transit and gastroparesis so my expectations weren’t high - especially as my surgeon chose loop colostomy as halfway house before deciding on ileostomy or not. My eating has definitely become disordered over the past 4 years as my systemic sclerosis has progressed so it’s interesting that you make the connection with the psychological shifts this often causes in our relationship with food.

I was previously a big (mostly healthy) eater and extremely overweight. Whereas I’m now teetering on underweight and being threatened with TPN. I can see the look of recognition in my gastroenterologist’s dietitian’s eyes when they bargain with me over tipping point if the trajectory continues slowly downward. I never used to count calories like this when I was obese but now I’m hellbent on neither gaining or losing weight post surgery. No Dr has suggested psychology for eating disorders to me so far but I often think they should. Maybe once we are in our 60s they just expect our common sense to prevail but you are so right to make the connection.

My newly qualified clinical psychologist daughter in law calls this association with food and pain, cognitive dissonance. Looking at my own behaviours historically and now around food and family visits, cooking smells and longings v practicalities - I definitely have trained my mind to look at trigger foods as 🤮poison now. And I feel myself becoming a bit judgemental back to those who seem to be judging me as too picky, anorexic, difficult etc. In response I look at what they are eating and see it coming out as extra smelly, unhealthy fatty now 💩😬🥴🤢🤦🏼‍♀️?! It’s pretty much impossible for this kind of surgery not to change our relationship with food. Ensure plus in decaf coffees and teas plus dark chocolate, marmite and pure nut butters and homemade banana shakes are my mainstay now as they were prior to surgery. I could maybe eat more foods now but due to the extra cognitive dissonance somehow I just can’t. I am maintaining my weight though so clearly my own very restrictive diet works. I also still take my powerful laxatives but need far less and they work much more effectively

[Suebedoo in reply to OldTed60]

If you find that eating is becoming an issue, I suggest you seek help via your GP. I don't think it is common to find a counsellor that works with disordered eating which may be why you have not been referred on.

[OldTed60 in reply to Suebedoo]

Sorry if I’ve not made myself clear. I’m not looking for a psych label and yes I’m sure that the NHS has to prioritise those, mostly young, with primary eating disorders. I’m just commenting with interest rather than need because I feel I manage my own weight pretty well under difficult circumstances. Whereas on gastroparesis communities I see a lot of young people with a catalogue of unmet needs relating to this condition. And it’s for them I’m concerned - not for myself.

[Suebedoo]

He does have a stoma nurse but usual demands of NHS, he doesn't always get to speak to her straightaway. Thank you so much for your help.

[Howlinwolf999]

Hi, the first thing to remember is that everyone is different and can react in all sorts of different ways. I had my surgery back in April 2016 to remove all of the colon etc and ended up with the permanent ileostomy. Post surgery I was prescribed Fortisip for a month or two, Fortisip came in a variety of flavours, smallish bottles but was a great supplement to build you up after abdominal surgery. It does take a little while to get used to the volume of output after surgery and getting used to solid food, output can vary person by person. It takes time and experimentation to establish how the changed digestive tract processes and tolerates different foods. In the early years I would occasionally get a bit of pain which could last a few hours, 7 years on from surgery I find few are off limits and I can just about eat most foods with no issues. Please speak to your GP/stoma nurse to get a prescription to build hubby up to a reasonable level. Hope this helps.

[Suebedoo in reply to Howlinwolf999]

Thank you - appreciate your comments and will try and speak to his stoma nurse about the drinks

[Suebedoo in reply to Howlinwolf999]

Just by way of update, my husband's bloods came back with significantly raised infection markers. He had a CT scan yesterday and it appears that there is still a collection of pus left over from the original operation. They were thinking of draining it but just didn't have the bed space by the looks of it. He has been sent home with antibiotics but is to report back on Monday. I have a feeling that he will end up being taken in. We were at the hospital having been asked to report there at 8.30 am until 4 pm. Most of that was waiting around, we suspect, for them to try and get him a bed. The GP has prescribed some drinks for him but yesterday has set him back as he was told to starve himself and as he didn't eat until after 4 pm I think there was a build up of wind and he threw up within 20 minutes of eating.

[Oldude]

I'm really sorry to hear about your husband. I know things can be really bad with stoma surgery since I am a user of a Kock's pouch formerly of a stoma bag. I recently had a blockage that caused severe pain and was hospitalized for 3 weeks +. I'm confident that your husband will recover from the infection. There are some amazing anti-biotics out there. Also for you to know that the average individual going under surgery will lose around 10 pounds. Eating is another thing the appetite probably won't return for maybe 10 days. Nothing to get concerned about except losing more weight, but once it returns, there is no stopping.

[Suebedoo]

thanks for the reassurance.

[Martz1234]

I understand his fear of eating. It takes time. Start off with Ensure and all things easy to digest. He will learn as he goes along what he cannot tolerate such as leafy, skin, onions etc

[Suebedoo]

Thanks Martz1234 - he saw the stoma nurse today which has put his mind at rest a bit. Now just to tackle his sleep pattern which is topsy turvy to say the least and is having an impact on us both.