Diet problems : Hi I am on Prednisolone for... - PMRGCAuk

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Diet problems

Raewynne profile image
15 Replies

Hi I am on Prednisolone for Temporal Arteritis. Down to 5mg.

My problem is I have just had a colostomy because of a perforated bowel.I am coming to terms with it but I have a problem with food.

I have steroid induced diabetes aheart condition ,glaucoma to name a few which I have been controlling with low inflammatory foods.

Unfortunately having a bag now I have to eat carbohydrates and white sugar and rice and flour etc which are not good for inflammation.

Most greens are out.No fruit.

I can see my weight ballooning.

Any ideas anyone.

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Raewynne profile image
Raewynne
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PMRpro profile image
PMRproAmbassador

How long is it since the surgery? Just looked, barely 2 weeks.

You are still very early days for the stoma diet and over time it will improve so you can eat food with more fibre and go back to your normal diet. The "beige" diet at present is so it is low residue to allow everything to heal.

salts.co.uk/en-gb/your-stom....

nhs.uk/conditions/colostomy....

This is particularly good I think

coloplast.co.uk/stoma/peopl...

and if you look at the dietary advice for an ostomy you will see it includes all vegetables. Just not yet - it will come,

Raewynne profile image
Raewynne in reply toPMRpro

Thanks. Yes I guess things will settle down in time.Just a bit anxious.

PMRpro profile image
PMRproAmbassador in reply toRaewynne

Of course you are - it is a whole new world to get used to. A friend's husband went though it just before xmas and it has taken until now for it to settle down - and she was an experienced nurse prior to retiral so familiar with stoma care. But stoma nurses are amazing people - they'll see you right.

There are lower carb alternatives that are likely to be fine fine fairly soon, have a look at those links and inform yourself. Knowledge is power.

SnazzyD profile image
SnazzyD

That’s so difficult for you. I’m presuming this diet is temporary until your gut settles? In my surgical nursing experience and seeing my sister have two ileostomies (admittedly different to a colostomy), it can take a wee while for the gut to settle. In fact any handling of the GI tract for any op seems to upset things.

Raewynne profile image
Raewynne in reply toSnazzyD

Yes the gut does not like upsets

SnazzyD profile image
SnazzyD in reply toRaewynne

It will mellow and your diet choices will increase. Frustrating you can’t just jump on the low carb for Pred thing, but it is what it is and your time will come.

Raewynne profile image
Raewynne in reply toSnazzyD

Yes it is what it is.I am still reeling from this happening to me but I'm improving slowly.

SnazzyD profile image
SnazzyD in reply toRaewynne

The op is not to be underestimated in terms of the psychological and emotional effects; no major surgery should be and it is glossed over. Even though you were ‘asleep’ the body knows exactly what happened. I’ve had patients ask why they keep crying because things are healing well etc. Often surgeons talk like it’s a load of Lego bricks being popped in and out, but one’s gentle soul and tissues beg to differ. It’s another time to wheel out the tedious but true sayings about one day at a time, it takes time blah blah. Having had few bits chopped off or out myself, I tried to make a point of visualising myself being wrapped in a blanket by myself as if I were being scooped up to be taken home to a warm fire.

Raewynne profile image
Raewynne in reply toSnazzyD

Yes this operation does cause huge psychological effects.You're right Snazzy the body knows exactly what happened to it while I was out.I felt quite assaulted. Very traumatised. I am sending my tummy lots of love and listening to healing music.

SnazzyD profile image
SnazzyD in reply toRaewynne

That’s quite normal. It sounds like you’re on the right road 🌳

PMRCanada profile image
PMRCanada

I have had to adopt a “beige” diet for several weeks this past year due to diverticulitis flares (after having adopted a much healthier low carb/sugar/salt eating plan for 4 years previously). I certainly didn’t want to gain back the 40lbs I’ve lost and kept off. On the other hand, I wanted the flare and resulting stomach pains to end asap.

I did find scrambled eggs was a great option, as was homemade soup/broth with noodles. Yoghurt and avocado were most welcome when introduced about 10-14 days into the beige diet as the antibiotics had done their work by then. To be honest re-incorporating salad has been the biggest challenge, boiled veg in soup was much easier and meant no discomfort afterwards.

At times it is difficult when our allowable foods has shrunk, and the fear of weight gain is real. I hope your new diet doesn’t negatively impact your diabetes. Be mindful and patient with yourself as you are also adjusting to a new lifestyle with a colostomy bag. We are here to support you along the way.

Raewynne profile image
Raewynne in reply toPMRCanada

Thankyou.yes having liver problems heart problems diabetes T A and now a Stoma it's all a bit tricky diet wise.The big thing at the moment is regulating my poo flow.i don't want to end up in emergency because of a blockage or anything.

Lizwillis profile image
Lizwillis

only just read your post! I think you are doing incredibly well after such a short time. I had to have an emergency Hartmans procedure at the end of last September. I was in incredible agony and, a bit like you, after a scan saw what the problem was. A burst abscess. I have had diverticular problems for a few years now including a couple of years ago having massive bleeding over two days. I was told it was due to diverticulits when in hospital. I had no idea!

Anyway, I ended up being in hospital for over three weeks and hardly ate anything. My CRP went from over 300 to over 400. Never having had it above about 13 before!i was put on drips and lots of antibiotics but had to fight to have my Prednisolone. They said it prevented healing, which I knew, however, because of the extreme reaction to the horrendous pain, I had a massive PMR flare and went onto 20 mgs just before going into hospital. Eventually I managed to persuade a nice consultant ( who actually had seen the results of the scan and told me about what was found ) to tell all the staff that I needed the Prednisolone. Unfortunately he didn’t do the operation.

When I got home I looked like a cadaver! I knew I had lost some weight, maybe half a stone, however, when I weighed myself I had actually lost 2 stone! Wonderful! I needed to! But gradually quite a lot has crept back on. I, too have steroid induced Diabetes.

Like you I was amazed at being told to eat beige foods. Anyway, six months on now and am eating more or less normally now with fruit , porridge and veggies along with salad things and protein like chicken and pork fillet, sometimes beef. Also unfortunately chocolate biscuits, which is putting the weight back on.

I must say, all this has been, like you a tremendous shock, both to my body and emotions and trying to deal with this new way of life with a stoma ( which I won’t be having reversed after a colorectal consultation, telling me , for me there were too many risks) . I couldn’t have managed all of this without the help of my husband.

I wish you all the best , just take things easy. It is a massive assault on your body and it has a lot to do to try and repair itself.

Raewynne profile image
Raewynne in reply toLizwillis

Thanks Liz Willis

Yes I sound very much like you.It was agony.Definitely felt assaulted.Such a roller coaster ride of emotions.Just can't stop crying at times but I am improving. Yes my daughter says I have lost weight.Well I couldn't eat eat for weeks prior to the opp.What I can't understand is how it came out of the blue.I thought I just had bad IBS from Fish oil tablets.Dr did too.But no it was an abscess which perforated my bowel.I thought I was doing so well recovering from my temporal arteritis and everything else.I had given away all my mobility aids .Even a great electric lift chair.I am still getting a lot of tummy pain.I think it may be nerve pain.Just very sore.I am still on pain relief called Palexia but it doesn't do much good for it.I don't want to take too much more. My head was really bad today and that was a bit scary.I don't want T A relapse. I went out for a bit today ...I felt quite sick.I was glad to lie down . You are lucky to have your husband to support you.Mine passed away at the beginning of covid.Imiss him terribly. We were always there for each other.This did make me feel a bit suicidle but I have got through that.Part of the course.I felt so wrotten a bout myself.Anyway nice to hear your story too.

Best wishes.

Lizwillis profile image
Lizwillis

oh gosh Raewynne, thank goodness you were got to in time. I can completely understand why you would think the pain had been caused by fish oil pills, not that I have taken them, but I though my pain might have been caused by a urinary tract infection, although I have never had one before. A very clued up GP at a medical centre realised something was not right and he took bloods and told me to go straight to A and E with his explanatory letter. We thought I would get whisked in straight away, but no! Had to go through the waiting procedure as everybody else!

It doesn’t sound right that you still have pain. I believe the surgeon who operated on me on opening me up after thinking he could do it with just small key hole cuts, so have ended up with a very long scar discovered the nastiness had gone everywhere, so had lots of “stuff” removed along with a great section of colon with the diverticulitis in. I imagine they might have had to suction out the nastiness. I do hope all of that has gone for you. Maybe you might need to ask your doctor about this?

I am so sorry your husband has passed away so recently. You are having to deal with that too. An awful lot of change of your life you are having to deal with.

I am very lucky I know to have my husband and that he is so helpful. It is one thing to deal with this operation and its consequences without also having to deal with an autoimmune disease as well, which of course, reacts badly to stress.

What a nuisance that you no longer have your mobility things which you would find helpful. Can you ask a community / district nurse about this? I had amazing support from these lovely ladies, plus the stoma nurses. We did buy an electric lifting chair which I find very useful.

Also masses of my hair has fallen out which on googling I understand is not uncommon after a major op with anaesthetic . I now look like a frightened Albert Einstein! Though, of course with very little brain available to me! None of these things help to make one feel vaguely “ normal”, which is so hard.

I think you are doing very well but also think it might be worth getting in touch with your GP and talking about your concerns. All of this is exhausting too.

Take care and do hope you begin to feel a little bit better.

Best wishes

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