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Hi

I was diagnosed with Crohns 10 years ago when I was 19. All went well after 7 years of meds everything seemed fine and stopped taking everything.

3 years later i've just had to have part of my intestine out as it perforated (78cm in total). No warning signs just pain at 4am one morning and rushed to hospital, I was completely blind sided by it.

So I'm sat at home recovering from surgery and stumbled across this forum, just thought I would say Hi and have a read through some of your stories/experiences and see how they tie up with mine.

Thanks
 
Hey, I am truly sorry you had to have surgery. I had 60cm of smaller intestine removed in 2003 and been on aza ever since, but also phased it out for 2 years. In retrospect, not a good decision.

I wish you a good recovery, rest and eat things that won't get you into trouble. What did they start you on for long term management of Crohn's post surgery?
 
At the moment I'm on no meds for the Crohns, as this came out the blue the docs are still a little baffled as to why I went from being 100% to 0% in only a few hours :-(

When I first got treated (all that time ago) I had steroids for a fair while and then Pentasa long term.

I have a meeting with the surgical and gastro team in 3 weeks and then they will look at long term treatment/management.

It now looks like the operation wound has started to become infected (only slightly nothing major) so also on a course an antibiotics to keep the recover in shape, apart from that I've got a dose of paracetamols and that's it.
 
I see, I hope you will be recovering soon. I also had what is called a secondary wound healing effect (essentially an infection) after my 2003 surgery. I hope you have your surgeon look into that and treat it.

Pentasa, unfortunately is a drug that helps only a small number of patients, I was on it for years... Before surgery to remove two strictures.

Anyway, just from my experience it is important to start long term Crohn's management as soon as possible after surgery at it will take time for drugs like aza or biologics to kick in and what you really don't want is a big flare a fewmonths after major surgery. Personally I woulsdn't wait 3 weeks, I started with aza four days after surgery. If Biologics had been as widely used back in 2003 as now I probably would have started biologics and aza in combination, after all it's the most effective treatment to go to deep remission.

Just a general question, in the lat 3 years did you have any sympthoms at all (diarrhea, gasing, stomach gurgling, occassional pains, swollen belly, etc.)?
 
I had no signs of trouble before the Op, no stomach pains/cramps/gas/swollen abdomen nothing. It was literally completely out the blue. I went to bed all fine then about 4am had stomach pains and by lunchtime I was in Hospital and loosing quite a lot of blood.

The bleeding stopped after a day or so and scans revealed no perforations anywhere but with the cameras they could tell part of the intestine was damaged then all appeared fine until Easter Sunday and then rushed down for surgery after another scan showed perforations in the small intestine.

I have been completely taken aback by this, I wish I had seen things coming at least then you can prepare.

Ah well what can you do I guess, rest and take the meds.
 
Hmmm, very strange that something like a perforation wasn't noticeable in the last few months, but often things are just the way they are.

Re meds, I had reservations about them for years until I finally did my research so I really knew enough about the subject. Meds can't cure you and definitely are just one small part of the overall remission management but I take them over surgery any time... I still would maybe just call your GI and ask about whether it doesn't make sense to start long term treatment already instead of waiting 3 weeks. There might be a reason they want you to wait.
 
It definitely a bizarre set of circumstances and many docs were puzzled when I got admitted.

I think because this was so out of the blue the docs are baffled so seeing how things go for a few weeks and then look at long term management.

I mean at the moment apart from the normal pains of surgery I'm ok, my stomach etc has given me no signs of previous pains or anything to be worried about, the diarrhoea has stopped now and much more solid.

I'm booked into see the nurse each day next week to keep an eye on my dressings so hopefully this wound will sort itself out in due course.
 

Angrybird

Moderator
Location
Hertfordshire
Just wanted to say hi and :welcome: to the forum.

I assume before the op you were only having annual check ups because of how well you are feeling? It is possible to be feeling fine whilst things are bubbling away inside so routine check ups should always be organised for you. Have you been advised on foods to eat post op? Please keep us updated on how you get on.

AB
xx
 
Hello

I was under guidance from my local doctor, the only thing they ever did was a 6monthly blood test to check all my levels etc but again nothing ever came back.

Obviously something was bubbling away in the background just had no idea how bad it was going to be, I was lucky and had blood transfusions ASAP and my Op was done quick too.

I have been given no guidance on food or rehabilitation since leaving the hospital a week ago, sort of sent on my way. Again before all this I could never pin point certain foods that caused me problems. I was able to eat citrus foods/ currys/fruits/milk all with no pains/cramps or any sign of problems.

Ah well I will get over this part and then readdress everything with the docs at my appointment.
 

Angrybird

Moderator
Location
Hertfordshire
After my op I was told to eat mushy foods like mash for a couple of weeks and then go onto other foods but to make sure they are fully chewed so as to go through the internal join more easily.
 
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