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can someone tell me more about crohns?

(4 Posts)
itsboiledeggsagain Wed 30-Oct-19 21:35:40

I've done a bit of emergency childcare for a friend who is having a bad time with crohns currently and is about to go for an op to remove some more colon as medicines are not working.

She is quite a private person so I have not asked her much about it but she is clearly very worried so I would like to understand more about her concerns. She has not had surgery for 10 years ish, and I understand surgery to be a bit of a last resort, but I don't really understand what good looks like - what a successful surgery will be or what will happen if it doesn't go well?

Also what sort of post op care will she need - she mentioned being in bed for a long time and being off work at least until the new year? is is like a c-section/hysterectomy in terms of recovery?

Any help welcomed so I can be a bit useful for her and avoid her having to utter sentences she doesnt want to. thanks

OP’s posts: |
unfathomablefathoms Fri 01-Nov-19 22:15:26

There is lots of good info here that will probably help you to support your friend: www.crohnsandcolitis.org.uk

To try and pick up on some of your questions...

Colectomy is a big deal, especially if she's already had some of her colon removed previously. Your colon performs the job of absorbing water so with less of it to do that job it's harder to stay hydrated (and easier to end up poorly from dehydration) and bowel function changes - more frequent, more urgent, more like diarrhoea etc. It depends a little on which section of colon and how much.

Colectomy is major surgery. As it's abdo surgery it's not dissimilar to hysterectomy in some ways - being able to use your muscles, heavy lifting, length of time you feel exhausted for afterwards (3-6 months) but you have the added complication of your bowel function completely changing, which can be life changing in a good way or a bad way.

It usually takes 12 months for bowel function to settle down into whatever its new pattern will be. It varies for everyone but she might have difficult times in the early weeks and months.

Diet is usually restricted to low fibre foods only for first six weeks and then gradually introduce one new food at a time. Some foods will likely be permanently problematic (e.g. Popcorn) but again it varies for everyone.

As with any abdo op if they can do keyhole surgery recovery will be a bit easier, but if they have to do open surgery recovery times will be extended.

There will be a risk her bowel will be too damaged to reconnect, which would mean they would have to create a stoma. This is usually an ileostomy (ie the small intestine is brought to the surface of the abdomen and an opening created) if it's thought reversal may be possible. It may be a colostomy (same deal except with the colon instead) - these can be reversed but it's harder.

Whether or not a stoma can be reversed depends on how the bowel heals, general health and whether it's thought there will be incontinence issues if reversed. For this last reason reversals are usually performed within 12 months (min 3 mths) as otherwise too much muscle tone can have been lost in the sphincter muscles.

If they don't need to create a stoma there is still a risk the new join could leak, which might mean they need to do an emergency operation which would usually create a stoma. Plus sepsis risk.I

I also imagine she might be worried once they open her up they'll find her bowel is more damaged than they thought, and then what that will mean for her future and how successful the surgery is.

Other risks of major surgery apply. Plus the bowel can go to sleep (paralytic ileus) after the surgery and take time to wake up, which can cause nausea and vomiting and generally delay recovery.

Risk of chronic pain also. Risk of adhesions. Risk of bowel obstruction requiring future surgery. Risk that the part of her bowel that was reconnected could turn into scar tissue and narrow so much she needs another colectomy. Risk of long term incontinence problems.

Best case scenario they reconnect her bowel successfully via keyhole surgery, she has no post op complications, is discharged quickly (timeframe is anywhere from 3-10 days if nothing major goes wrong), her bowel function settles quickly and she has no long term issues.

Worst case scenarios? Open surgery being required, temporary or permanent stoma, long hospital stay, post op complications, second emergency surgery, long term problems, incontinence issues...

Depending on what her job involves it's usually 6-8 weeks off work if successful colectomy or 8+ weeks if a stoma is created. Some people are ready sooner, some later. A phased return can help. If it's a physical job it could be 12 weeks. Everyone is different.

Most hospitals use enhanced recovery now which means rather than being kept off food she'll be encouraged to start eating and drinking as soon as she feels able as this reduces the risk of paralytic ileus and generally speeds recovery up. They'll also get her up out of bed and walking about from the day after surgery. Again, recovery is faster the more mobile you are.

She will have little energy for a while and get tired out easily, but staying in bed excessively does slow down recovery. Balance of rest and activity.

So I can imagine her feeling pretty scared and down and overwhelmed. There is a lot of uncertainty and some pretty nasty stuff to get through.

Ways you can help...

Educating yourself the way you've already started, so you understand a bit more and can be tuned in more to what she might need or be struggling with.

Offering to look after the children for a day or few hours to give her a break, or taking them out for a while.

Offering help with specific tasks rather than making a general "let me know if I can do anything" offer as it can be too hard to work out what to ask for. E.g. Offering to pop round and run the Hoover around as she won't be able to do that, or asking if she'd like you to pick up some shopping while you're at the supermarket, or making a few meals she can heat up in the microwave...t

If she's quite private perhaps offering to keep in regular phone/text contact at set intervals rather than visiting in person when she's feeling vulnerable.

Alternatively, providing a bit of company! Popping round for a chat, or taking her out for lunch or a tea if she's going stir crazy at home.

Remembering her 4, 6, 8 weeks post op when she might be looking normal again but still feeling awful and struggling. Depression is common post op, partly because of the drugs they use in anaesthetic and partly because of the huge change to your body and life and/or it feeling like you'll never be well again.

Flowers or a card of encouragement.

Helping her pack for hospital or providing a care package for after? There was a thread this week of people offering suggestions on what they found most helpful in hospital.

Respecting her private nature the way you are, but also maybe making her aware that's what you're doing so she doesn't end up feeling isolated? Not to make a big thing of it just to let her know you don't want to pry or invade but you care and will help in any way you can / be here for support / wondered if it would help if you did xyz...

As a final comment if you've made it this far, it's really lovely that you care enough to be asking these questions and wanting to understand so you can be helpful without invading. I really hope your friend's surgery goes well and she gets a good outcome so her life can be easier than it is right now.

unfathomablefathoms Fri 01-Nov-19 22:21:27

This is the thread I was thinking of about hospital bags. It has some good ideas:

www.mumsnet.com/Talk/_chat/3730794-Well-I-didnt-expect-that-damnit?pg=1&order=

itsboiledeggsagain Sat 02-Nov-19 08:18:05

Wow that is a hugely helpful answer thanks for taking the time to explain so thoroughly, you clearly have considerable experience in this flowers

I really hope it goes well for her, no wonder she is so worried.

OP’s posts: |

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