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My elderly mother and Crohns

Hi everyone, I'm new to this group, and although I have bowel problems myself, I've actually joined because my 83 yr old mother has Crohns and is extremely ill with it. I didn't realise how much until recently, we've never been close, and I don't see her very often, my sister lives near her, I live 20 miles away and worked until recently.
I lost my job a couple of months ago, and when my mum found out, she asked if I would help her with shopping, hospital appointments etc, as she'd been struggling. I didn't think twice, I thought it would be nice to spend time with her, so for the last two months, I've been looking after her as best I can.
She seems to have constant Crohns, with no remission whatsoever, I couldn't understand why until I started taking her shopping!
I've been doing lots of research over the past couple of weeks, and I once asked my mum what foods she couldn't eat, and she said she could eat anything, I thought this strange, because there are a lot of foods that make me ill, like some vegetables, and some fruits amongst other things. I have read people with Crohns can't tolerate milk and milk products, and she gets through half a litre of cream, 4 litres of full fat milk, cabbage, apricots, tinned rice pudding, tinned vegetable soups, bacon, sausages, and litres of fizzy lemonade, in just one week! Having read all of the above should be avoided when having an attack, I now understand why she's not going into remission!
She's lost 5 stone in a year, and is up in the middle of the night 2 or 3 times, changing bed sheets and nightware, because she's bleeding so much, the hospital has had to stop her warfarin which she takes because she had a stroke a few years ago, so her chances now of having another stroke have multiplied.
I've given her a book, and asked her to use it as a food diary, to log everything she eats, and how she feels after she's eaten, but she hasn't bothered. I asked if she'd seen a dietitian at the hospital, I asked why the dietitian hadn't explained to her about her diet, she says all the dietitian did was give her some liquid foods. I then found out, my sister had a go at my mum for using the liquid diet instead of eating meals, my sister insists they gave them to her to take as well as her normal food to build her up, because she's lost so much weight, but I've been reading when having an attack, these are to take instead of food, so my mum threw them away.
Honestly, I'm pulling my hair out at the moment, with the frustration of it all.
She has an pre-op appointment next Monday with the specialist to have her bowel removed. I asked her if she had any information on it from the hospital, but she says no, so I took my computer one day and asked her if she wanted to see pictures of people who have had their bowel removed so she knew what to expect, but she says no, she doesn't want to know anything about it, she just wants the thing removed.
How can I get through to a stubborn, cantankerous old person, because I'm running out of patience with her, and I now realise why we've never been close.
Sorry for the long post.
 
You're doing your best so there's no point making yourself ill worrying.Things will change after her forthcoming OP.I expect you'll be going with her for her pre op appointment so write a list of things to ask,while you're there.Some one will be along soon who has been through the op. and knows more than I do about it.Best to you.
 

cmack

Moderator
Staff member
You have my support, that sounds very trying. Maybe you could take a few notes about what you see going on regarding her food choices. You could then ask the doctor right in front of her if those things are good choices for you or for her to eat. Just an idea, hang in there. My mother is stubborn as well.
 

my little penguin

Moderator
Staff member
Definitely talk to her doctor
Food and diet is very individual
Some folks with crohns tolerate milk products no issues

Food does NOT cause flares of Crohns
That said it can make a flare worse

Ds has gone on no solid food diet (formula only ) for weeks on end
It can help BUT the person has to be willing to do it

He was only 7 at the time so he didn’t think he had a choice
Now that he is almost 15 that would be way more difficult

Hope she does well with the surgery

They may change her diet simply due to the surgery so it might be best to wait
On diet changes


Good luck
 
Thank you both for your replies.
Yes I am going with her to her pre-op, and have already made my notes and the questions I want to ask the doctors. This will be her second pre-op, as at the first one, it was decided she probably wasn't strong enough to pull through the op, as she has an irregular heart beat.
What I can't get through to my mum is, she has an irregular heartbeat because she's extremely anaemic, and in the past she's had two blood transfusions for this, but she won't take any supplements. I bought her a bottle of iron tonic, cost me £20, something I can't afford because I don't have an income now. I've taken it myself in the past and it's very palatable, she's had one spoonful. She could have got a good months worth into her system by now, and maybe started to feel a little better, but she won't help herself!
I've explained to her she only has to watch her diet while she's having an attack, and when she feels better, she could start eating 'normally' again, hopefully.
She's lost 5 stone in weight in a year, she's so weak and she keeps falling, she fell twice last week, she fell getting out of the bath and banged her chin on the corner of the bath, her face is all bruised, she managed to pull herself up, she's lost her muscle, she's so thin, she can't weigh more than 6 stone. She lives on her own, I asked her what she would do if she fell and couldn't get back up? She says she'd stay there until someone finds her... honestly I could scream!!!
 

my little penguin

Moderator
Staff member
If her Crohns is severe
Over the counter iron will probably not help her anemia
Iron transfusions by iv are generally needed
These iv transfusions are very hard on the body
Supplement of iron by pills takes 6-9 months to move the iron in your system
Even with mild anemia ( Ds tried pills )
And even then it can cause other GI issues

changing her diet won’t fix her Crohns
And may make her lose more weight

Please don’t change anything or give any supplements
Unless her doctors order them for her

Let her eat her normal diet unless the doctor’s specifically tell you to change cyz

Crohns isn’t like normal GI upset (ibs) where food triggers things

It just doesn’t
Only do what her docs recommend
Since something that would make sense in ibs
May make things worse in Crohns

Btdt
 
It sounds to me like she might not be having the OP again.I don't know what to suggest.She's very lucky to have someone to care about her,and she's being very silly being so stubborn.You're always welcome on here to give vent and we also have a carers thread which might help you.I'm sure you're not the only one going through this upsetting and stressful time.Let's know how it goes.
 
I visited mum yesterday and she seemed a little better, I haven't seen her since last Friday, but she's thrown out all her milk and milk products, and is drinking the lactose free. Coincidence?
I took her shopping and as we were going round, she kept asking me what she should buy, and what I thought would upset her. She bought two bananas instead of apricots, so it's a start lol.
She says she was going to make some chicken soup, so I advised her on the vegetables to put with it, she wasn't happy at the limited choice, so threw some peas in the trolley, and I bit my lip in frustration. Pleased she didn't buy any cream or rice pudding, and I've promised to make her some with lactose free milk. I tried to get her to try sweet potato, but she didn't want to.
But we're making progress at last. I'd printed some information off for her to read and left her looking through it.
I took her blood pressure before I went home and 80/45 isn't good, there's no wonder she keeps falling.
Anyway I'm starting to feel a little more positive, I'll have a better understanding on Monday when we see the specialist.
Thank you everyone, I appreciate all your advice, and scottsma, thanks for your support and kind words x
 
A lot of people on the forum keep a food diary and find it beneficial.Write down everything you eat (I mean your mum of course) and any effects it might have on the digestion,then eliminate that from the diet.It can be a long process though and things might be different IF she has her OP.I'm glad she's being "good".Maybe she has been in denial and now she has you to depend on,she's realised she's not alone after all.Also she sounds like a strong minded, independent lady and has found it difficult to depend on others.But we're always here for you,so if you want to vent anytime,go right ahead.
 
So, we went for my mums pre-op, and she was actually a little better that day. All the Doctors, consultants we saw, are all in agreement with me that it's her Anemia making her ill, as well as her Crohns.
She's adamant she's having the big operation to remove the diseased bowel, and her odds are as follows... 35% chance of dying having the op done, and 95% chance of complications. The smaller operation to cut the bowl and bring it to the outside, the odds are... 5% chance of dying, and 50% chance of complications.
Obviously I want her to have the least risky, but no, she wants the biggy.
They have to have her in the day before to give her a blood transfusion first.
Because she's had abscesses that won't heal, and constantly ooze pus and blood, she says with the bowel removal, she won't have these abscesses anymore, but with the other op she'll still have them, she didn't mention these abscesses at the pre-op.
Does anyone know if this is true please?
 

cmack

Moderator
Staff member
Tagging Bufford . I think the least dangerous operation is the best. I'm not sure that the abscesses(although draining)will stop unless the crohn's disease is under control. I would try a medication like remicade or another biologic and the least invasive surgery as a second choice if the meds don't heal the problems. That's just if it were me and I haven't personally had the remicade, I just know of others who had success with it. Good luck.
 
Thanks!
She's had every medication there is, and nothing has helped, that's why she is desperate for the operation. She's 83 and finding it difficult to cope with now.
I know she's in a lot of pain with the abscesses, she struggles to sit down, she's up all night and having to shower because she's waking 2 or 3 times a night, covered in blood and pus.
I'm now starting to wonder if it's the abscesses that are the problem with her, more than the crohns...
 

cmack

Moderator
Staff member
The crohn's is probably causing most of the trouble with her health. I really feel for you and your mom, that sounds very difficult. Abscesses are very problematic and can lead to sepsis, it happened to me before. Are you sure she tried all the drugs available? There are some new drugs as well. Entyvio, or vedolizumab (the generic name) is a fairly new one that has worked for some folks. Sometimes they will also combine different drugs as well to produce better results. You may need another opinion on treatment options. I would always still go with medicinal treatment before a surgical procedure though, and then always take the side of caution or the least invasive procedure.
 

Maya142

Moderator
Staff member
Hi and welcome. Your poor mother - I am sorry she is having such a hard time. What medications has she tried? Perhaps there is a medication she could try before going to surgery.

Has she had blood transfusions? Do you know her hemoglobin? Or her Ferritin? If her hemoglobin is ok but Ferritin is low, she may need iron infusions. My daughter need iron infusions - her hemoglobin was 9.0 and her Ferritin was like 6. We tried iron pills and she could not tolerate them - they made her nauseous and miserable. Her Ferritin fell to 3 and then she had weekly iron infusions for 4-5 weeks.

They were actually quite easy for her. They took less than an hour. She had no side effects at all. And once she had had several infusions, it was like she was a new person. She felt SO much better in terms of fatigue.

If she does have a low hemoglobin too, then she may need a blood transfusion instead of an iron infusion. Our hematologist said the risks outweigh the benefits unless your hemoglobin was 8 or lower.

I would talk to her GI or dietician about diet. Most people eat a low residue diet when they are flaring or have strictures. With a low residue diet, you want to avoid fiber so actually veggies can be hard on the gut. It's very counter-intuitive but it's all the white foods that are easy on your gut - rice, potatoes, white bread etc.

Another option would be formula supplementation for extra calories and nutrition. Formula can be instead of food or with food. If it's just to gain weight for extra nutrition, it's given in addition to food. If it's meant to induce remission, then only formula is allowed for 6-8 weeks.

I would ask if she can see the dietician again and this time I would go with her. A second pair of ears always helps.
 
She has been in and out of hospital for over 2 years with her Crohns, and really has tried everything available to her, the only thing that has ever worked was steroids, but she isn't allowed anymore.
She's had blood transfusions, she has a high risk of stroke, so has to take Warfarin, trouble is it makes her bleed a lot, hence the anemia!
She has stopped taking the iron tonic I bought her, which the hospital said was an excellent choice for her, as she says it's made her unable to go, and it runs out of her. The tonic contains ingredients to stop constipation, but then she's still got poo running out of her!
I've educated her on her diet, and she has started to listen, she just wants it all to stop, she says life isn't worth living as she is, and she'll risk the big operation, because she'll be dead soon anyway without it.
She has yet another appointment on the 24th of July, she despairs of it all.
 

Maya142

Moderator
Staff member
Is she seeing a psychologist? I don't blame your poor mother for being depressed. Seeing someone to talk about everything that is going on might help.

There are some new biologics that have been approved - has she been on Stelara (ustekinumab) by any chance? I know it is being used in the UK now.

There are also biologics still in trials. Would she qualify for a clinical trial? Would she even consider looking into it?

It sounds like she is very complex. I wish I had more or better advice. Sending hugs :ghug:.
 
My mum has been rushed into hospital today, as she's taken a turn for the worse.
She's had constant poo running out of her for the last 24 hours, and she can hardly stand.
I'm not sure how I'm feeling at the moment, but she doesn't think she'll come home, and I think she's right.
If I don't come back on the forum, then I just want to thank you all for your support and kind words.
 
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