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Help for Mum please.

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Posted 7/4/2013 5:44 AM (GMT 0)
Hello all you lovely people. 

I have been reading some of your posts since Mum's surgery and you all seem really wonderful - it must be so hard sometimes to remain positive when you have so much to work through!

I'm hoping someone can please help... My mother (Brenda) had major surgery to remove a rather massive (encased) tumour from her rectum, secum, apendix and sigmoid.  She also lost an ovary and a kidney.  The surgery took around 10 hours!  Yet... success!  The Doctors now believe she may be cancer free and stands an excellent chance to remain so.

However... Since the surgery Mum has lost at least another 10kg, considering she only weighed around 42kg when she went in, this is quite terrifying.  Prior to the cancer, Mum was actually a little overweight, so in the last 12 months she has had dramatic weight loss.  She now weighs in at around 33kg!

Mum has not coped well.  She HATES the illeostomy and finds it very difficult changing the bags.  Often it will leak which causes further anxiety.  All this can be dealth with, and at 69 she really is doing amazingly well all things considered, but I think if she doesn't start putting on weight soon, the cure will kill her.

Mum has terrible trouble with nausea.  She is vomiting at least once a day.  She is on various medications however they don't seem to control it very well.  She states that her pain is constant but not too severe.  Her output is still very watery and little she eats will slow it down, including arrowroot biscuits, bananas, marshmallows etc etc.  She's also taking imodium, benfibre etc to medicate.

If anyone has any thoughts as to how I might help Mum with her nausea I would be so thankful.  Are there any foods which cause little problems but are fattening?  Any ideas at all on anything and everything will be taken with huge appreciation.

Thank you all for your time,

Shelley

 

Posted 7/4/2013 9:01 AM (GMT 0)
i dont know if i can help a whole lot. your mum has been through so much and 33kg is radically low. after my colectomy i couldn't eat almost ANYTHING. i had about 10 things i could eat, like: yogurt (not any other kind of dairy), chicken, peeled and cooked zuccini and carrots (other veggies even cooked could cause serious probs including a blockage), honey, eggplants, handfull of potato chips a day, 1-2 crackers a day (more would cause severe pain), eggs and icecream.

i didn't have severe weight loss. i was about 46kg after surgery (i'm 1.64 meter - idk how much in inches). but one thing i could eat and wasn't causing any probs was icecream - lots and lots of it. and sherbets too. i ate approx 3 litters of icecream and sherbet per week. within 2 mons i was back to 51kg - my weight before surgery. the icecream is the main thing that made me gain all the weight back, cause all the other foods i ate very small amounts.

as i said, i don't know much to give full advice, but just throwing an idea here. best wishes to your mum and you! hope she gets through this soon!
Posted 7/4/2013 11:28 AM (GMT 0)
Welcome Shev, and so happy your mom is cancer free.

Have you looked into high calorie supplements? There's one called benecalorie, which is 330 calories in an ounce of liquid, and there are others.

There are also stronger things than immodium to slow output down. Have you discussed w/a doctor? A gi, not a surgeon would be best for these issues. It seems critical that they keep trying to find something that works for her nausea....

If there is an in person ostomy support group in your area, I'd also recommend it if she's up for it (perhaps you can go too). She's just been through so much emotionally. Not saying that her problems are primarily psychological, clearly there are physical issues, but if she could meet others who had been through similar things, it might help a bit w/the stress and trauma, and that would be a good thing overall. She might also get some tips that would help w/managing the bag.

Hope things get better soon.
Posted 7/4/2013 12:33 PM (GMT 0)
One other thought: with such watery output, she could be dehydrated, which could contribute to the nausea. She needs to be drinking a lot, and something w/electrolytes in it, not just plain water.
Posted 7/4/2013 12:49 PM (GMT 0)
Hi 2b and BG, thanks for your responses.

Mum's on a high-cal sup drink called resource. I do agree that some of it may be psychological, I've tried to have her talk with a few psychologists at the hospital but she's a bit stubborn and stoic. There aren't really any groups around, and unfortunately I doubt Mum would go :(

I'm going to see the GI Dr on Monday with her, so I will ask about the higer-end drugs you mentioned may be available for slowing the output.

Thank you both for your suggestions! I'll suggest Mum hook into the ice-cream as much as possible.

Shelley
Posted 7/4/2013 12:51 PM (GMT 0)
Oh and yes - she gets easily dehydrated.  I've got her drinking as much as she can - as well as drinking the electrolyte drinks - but they too make her nauseated.... UGH.  On last bloods she had a low sodium level and was hyperkalaemic
Posted 7/5/2013 2:45 AM (GMT 0)
Is she taking zophran or phenogren? (I am sure I spelled those wrong,lol)
I agree that the throwing up could be from dehydration. It is very common to get dehydrated after surgery and she is having high output. Even with normal output I ended up at the ER about 3 weeks afterward, I just hadn't figured out how much to drink yet.
The emotional aspect can be really hard to deal with, especially when it comes on from something like a tumor and people probably haven't had years to get their head wrapped around it.
Can she eat fries or baked or mashed potatoes? Those won't put on weight on their own, but fries can go in ranch dressing which really packs on weihgt and baked potatoes can have butter and sourcream and salt added, and mashed potatoes can be made with sour cream and butter. Can she drink whole milk? Chocolate would be even better.
What kind of leaking is she having? This early on it's probably just because she doesn't have a good system down, or the right products. That would help her if she could get that under control, it would make it easier to deal wtih and come to terms with.
Posted 7/5/2013 7:18 AM (GMT 0)
For weight gain, if could get a lot of premium (high cream content) icecream down (which might cheer her up as well), that would help. Also, if she likes to eat creamy peanut butter - it's got a lot of fat, lots of protein and nutrients - it's the main food that helped me keep my weight when I had my last two awful colitis flares and my doctor told me to try not to lose weight. A slice of white bread, toasted, with peanut butter, honey and banana slices - that was what basically kept my blood levels in the safe zone, and put me in a relatively decent mood even through the worst of it. Eating food you like will really help with how you feel, if you can relax enough to have an appetitite.
While I was having a difficult adjustment to the stoma, however, my association to food was less positive, for obvious reasons. You didn't mention how long ago your mom had surgery, but it sounds fairly recent. Everyone with a stoma will go through a difficult and nerve-wraching "shrink and leak" phase sometime after the 3rd week. The stoma changes and this causes leaks. It's the time to stay calm and figure out the most reliable pouching system. Ask for help from the stoma nurse. My leak phase lasted 3-4 weeks and then stabilized.
All the best to your mom.

PS: Sorry I cannot comment on the nausea. If it is dehydration, then you need to take care of that and find a system of making sure she stays dehydrated always. Immodium helped a lot.
Posted 7/5/2013 11:52 AM (GMT 0)
Thanks for all those ideas.  Mum is on zofran and maxalon for the nausea, which usually helps, but recently has not been very effective.

Since I wrote this last night, I have admitted Mum back into hospital.  She was simply too weak and lethargic to remain at home.  I called the ambulance on her heheh.  The Docs are doing their best to get to the cause and she's now on fluids, anti-nausea and high calorie diet.  I've asked them to consider a port so that i can administer fluids regularly - not sure if they are going to do it but it would be a great help.

I LOVE the idea of the peanut butter, banana and honey on white - that sounds great.  Combined with the ice-cream that will help a lot.  I'll also hook her into the potato-based foods with dressings.  Mum does seem to tolerate the dairy, so that's good. 

As soon as she's up for it, I'll try to get her on this forum - I think talking with you all may help considerably.  I'm also going to have a psych consult at the hospital.

I shall keep you all posted - thanks again for your support!


Shev

Posted 7/5/2013 5:56 PM (GMT 0)
It would be better if they found the cause of the nausea ihinstead of treating it with a cocktail. When I had surgery, I didn't tolerate the anaesthesia very well that time, and reacted with headaches and nausea. They gave me a super cocktail for the nausea and headaches, which caused another reaction. I'd never been that senstive to drugs before, but I'd never had so many all at once before either.

Regarding the peanut butter - make sure it is creamy, and try for an organic type. Those sandwiches would fatten me up now so I don't dare - but they did give me a lot of energy when I didn't have any, so I think it's a great and easy food for convalescence.
At that time I was also eating omelette sandwiches on white with lots of yummy butter, which I also don't allow myself much of in healthy life. It went down nicely, and butter is so comforting. Think high energy, comfort food that digest easily, and that usually helps a person's mood. Rice pudding would be good too, although I don't like it personally. High-fat content yoghurts. For when she comes home.
Posted 7/6/2013 12:55 AM (GMT 0)
Peanut butter and potatoes are good thickening foods too. Although the ice cream might make it thinner, because of the sugar. It doesn't always do that to me, but it does if I eat too much of it. Frozen yogurt doesn't have as many calories but tends to give me less watery output and might still help. Cake is a good thickener too, any carbs really.
I hope she gets this figured out!
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