Hi can anyone help with Crohns Disease and have you had surgery?

[saturdaygirl]

After years of being told I have IBS and a recent admission to hospital I have been told I have Crohns Disease. At the moment I am struggling to eat anything due to sickness.

I have also been told steriods will not be suitable as I have a perforation in my bowel area which will need removing at some point.

Has anyone experience of this surgery, i.e time in hospital and recovery time?

also any tips on what I can try to eat.

Thank you

[whymumwhymum]

Sorry have no specific experience of crohns myself but have three friends who have it (what are the odds of that!?)

I am sure that when they are having a flare up they get meds to reduce nausea, also one of my friends is not able to eat many foods and if she strays into a 'bad food' she gets very sick as well as the other abdo symptoms. Have you made any limks with symptoms/specific foods?

I understand that for a lot of people avoiding high fibre diets during a flare up can also help.

Not sure about surgery etc, have you had the chance to discuss in depth with a consultant gastroenterologist etc? What happens in your case will depdend on where the perforation is etc I would imagine.

Good luck and i hope you are feeling better soon

[saturdaygirl]

Thank you for your response.

I only got diagnosed recently and had a mix up at hospital, I was released without seeing the Doctor and no medication. Consequently I will not see anyone until Tuesday.

Have not made food connections yet as I am still in so much pain all of the time.

[PeachyPossum]

Hi,

I have a preliminary Crohns diagnosis, based on colonoscopy and med history, just waiting for the biopsy results, but I have been unwell for a long time so I dont think there is much room for doubt. Currently I have 4 anti-sickness tablets plus prescription antacids per day, and they have promised me meds to take the pain away once the results come in.

When I spent some time in hospital recently there were a few women in that had the surgery (but for other reasons) and they came in, had the op, recovered and went home whilst I was waiting for my tests to be done! They rested for a few days on bed rest with the nurses helping them with keeping fresh etc then within a day or so they started up and about, having a wee and a shower etc.

How much have you looked into the recovery process?

Personally I am in complete denial that alcohol is a trigger :( but chocolate also makes me really poorly now, and I limit milk stuff (using lactofree at the moment which is great) I don't cut anything out completely (other than choc, but white choc is fine) but I do need to start accepting the wine is a nono and cut back!! Have you been booked to see the dietitians yet? My appt is on Friday and they sounded lovely on the phone!

Can I ask what your process has been with this? I understand it to be very rare, and that drs dont always know much about it. I had to fight to get past the 'period pains' 'depression' 'ibs' diagnosis's!

Maybe we could start a support thread, I know there are a few others here that have connections with the disease if not the diseases its self.

[sandripples]

Hi Saturday girl, a good firend of mine has Crohns and has had it for over 10 years wioth a number of flare-ups and different treatments. She is apparantly at the sever end of the condition. I know she has found the Crohn Society website extremely helpful over the years so wondered of you'd been on there? There is a forum too as she has made friends on there, I know.

My friend did eventually have surgery which made her hugely better but she did have another nasty flare about 2-3 years afterwards. I think you have to push to go to a hospital with a real specialist with this condition and I do think the Society would be a good place to ask questions. Good luck.

[saturdaygirl]

I havn't actually had any medication or anything yet due to mix up at hospital so havn't been offered dietician appointment either.

A support thread sounds like a great idea as I have found the whole process very scary and lonely, see you on it.

[glitzstar]

Hi

Really sorry to hear you're in pain - hope you manage to access some help soon. Keep pestering them.

I've been diagnosed with Crohns since 2006. To try and help:

I've had surgery, but in the form of a bypass operation on my stomach, rather than the re-section you're probably looking at. The Crohns blocked my duodenum. It took about 6 weeks to fully recover and everything was fine.

In terms of eating, look up 'low residue diet' which is helpful when you're having problems. It just means basically eating low fibre, blandish foods. When you see the dietician, they might offer you Modulen, which is a bit like Complan and I have found to be helpful in the past.

Probably teaching you to suck eggs here, but when you're sorted and healthy again, don't make the mistake of thinking it was a one off blip and you don't need to attend the hospital check up appointments (I speak from bitter experience lol). Fingers crossed it won't rear its head too often but you need someone to contact immediately when it does.

Crohns and Colitis UK website and CrohnsZone are both helpful sources of information.

Fingers crossed you start feeling better soon - take care of yourself x