After over a year of trying different meds and still getting worse my gastro consultant has decided I should have a small bowel resection to remove the stricture thats causing most of my problems. My symptoms have become so much worse over the last few months (awful cramps, nausea, wt loss, fatigue etc..) and he made it sound like the surgery should be soon.

So, I've been waiting ofr a letter for my surgical consultation, and after a couple of weeks decided to chase it up. I was told its 6-8 weeks for an appt to see the surgeon and then probablly another 6-8 weeks after that for the surgery to happen...and thats if its considered relitively urgent! I was so shocked! I have no idea how I can go on for abother 3 months at least feeling like this, the pain has me in tears most days and I'm struggling to cope with looking after my 19 month old son on the days he isn't in nursery.

Has everyone else had the same experience? My other op was emergency as I was in obstruction, plus that was 15 years ago! Is it normal to have to wait so long? I'd love to hear other people's experiences and how you coped with day to day life whilst waiting?!

Cassie,

Not much experience with Crohn's surgery waiting times but pretty much anything that involves seeing a surgeon or a consultant takes that sort of length of time unless it is considered an emergency. If I was cynical I would add "or unless it's on a government waiting list target". I think the only thing you can do is discuss with your GP and see if he can do anything to speed the process up. Sorry, I can't be more help

Nigel

I was told I would have to wait 8 weeks for my Colonoscopy then 2 weeks for the results then if I needed surgery it would be another 16 weeks !! I was in so much pain I ended up paying for the Colonoscopy (£1000) got the results the next day. Was told I needed urgent surgery and had it on the NHS within 2 weeks.

Funny thing was that I was post recovery when I received my appt for the camera....my surgeon said my bowls would have reptured by then !! Scary thought. My GP was great,the only one who knew something was wrong. Drs at A&E were a waste of space...saw 6 of them over a 2 week period and was diagnosed as everything from Kidney Stones,pulled stomach muscle to take an asprin and come back in 2 weeks if it still hurts !! I even heard one of them say "He looks healthy cant be much wrong" !!!!

David

When I had to wait for my surgery I was considered urgent and I had to wait for about 6 weeks to get in for the operation, and that is having it done privately (medical insurance). I just did the best I could while I waited for the surgery. I don't know if you are interested or not but it may be possible that a raw food diet could give your body a chance to heal, I don't know any of the details of your case and don't pretend to but it could be worth having a look at. If you are interested the best person that I know about is David Klein and his site is www.colitis-crohns.com. If it is not your thing that is cool but I wanted you to have the chance at looking in to it if it is a good fit for you.

One of the main ways that I kept myself busy during the times that I was waiting to have surgery, was to start doing some hobbies to keep my mind busy. Whatever you are in to and enjoy doing it can make a big difference to help pass the time.

All The Best

Andrew

Thanks for your replies. Seems like fate decided to move things along...I ended up in a&e last weekend in obstruction! I now have a surgery date of the 18th June. I have to wean off my steroids 1st, and try to build up nutritionally. I've been put on a liquid diet....6 fortisips a day! yeugh! But I will do anything to feel better, I have't felt this poorly before and I just can't wait to try and get my normal life back!

Hi Cassie.  I had very similar experience.  It's a very long story leading up to this, but basically I ended up in hospital in November for 3 weeks with a bowel obstruction and Crohn's flare up. I was sent home only to return to hospital for another 5 days a week later (I discharged myself on Xmas eve).  To cut a very long story short, I was very ill and needed a small bowel resection.  When I left hospital they put me down as urgent to be seen by surgeon. I was on steroids, Infliximab and painkillers and was not eating at all, just living off fortisip shakes.  Beginning of January a letter came saying that I had an "urgent" appt with the surgeon......at the end of March!!!  That was just to SEE him, it probably would have taken another 3 or 4 months to actually have the surgery! I have a husband who has a very demanding job and travels a lot, I have 3 kids and I have a part time job (which I wasn't able to do). How was I suppose to carry on feeling the way I did for possibly another 6 months??  In the end, my husband rang the secretary of the surgeon and asked if there was ANY way I could get to see him earlier, to which she said "No".  So my husband asked what if we 'go private'.  I was in to see him the next week! And I had my surgery on 10th of March.  And I'm now on the road to recovery and trying to build up my strength and energy again.

I totally understand when you say you want your normal life back.  I'm so glad I had surgery, but it's still taking time to return back to 'normal'. I am so tired all the time, but the pain is much much better.  i still get cramps occassionally, but I think I still have a few areas of inflammed bowel which will hopefully heal with medication.  I think part of me thought (and hoped) that I would just wake up from surgery feeling 100%, but 8 weeks later, I'm still only about 75% there. I think I forget that a bowel resection is quite a major op, and not only do you have to recover from Crohn's flare up, but also from the surgery.  

Good luck to you.  I hope the op goes well and keep us updated on your progress. If you have any questions about what to expect etc let me know.  I'm always happy to talk Crohn's with someone who knows what I'm talking about!

Hi Cassie.  I had very similar experience.  It's a very long story leading up to this, but basically I ended up in hospital in November for 3 weeks with a bowel obstruction and Crohn's flare up. I was sent home only to return to hospital for another 5 days a week later (I discharged myself on Xmas eve).  To cut a very long story short, I was very ill and needed a small bowel resection.  When I left hospital they put me down as urgent to be seen by surgeon. I was on steroids, Infliximab and painkillers and was not eating at all, just living off fortisip shakes.  Beginning of January a letter came saying that I had an "urgent" appt with the surgeon......at the end of March!!!  That was just to SEE him, it probably would have taken another 3 or 4 months to actually have the surgery! I have a husband who has a very demanding job and travels a lot, I have 3 kids and I have a part time job (which I wasn't able to do). How was I suppose to carry on feeling the way I did for possibly another 6 months??  In the end, my husband rang the secretary of the surgeon and asked if there was ANY way I could get to see him earlier, to which she said "No".  So my husband asked what if we 'go private'.  I was in to see him the next week! And I had my surgery on 10th of March.  And I'm now on the road to recovery and trying to build up my strength and energy again.

I totally understand when you say you want your normal life back.  I'm so glad I had surgery, but it's still taking time to return back to 'normal'. I am so tired all the time, but the pain is much much better.  i still get cramps occassionally, but I think I still have a few areas of inflammed bowel which will hopefully heal with medication.  I think part of me thought (and hoped) that I would just wake up from surgery feeling 100%, but 8 weeks later, I'm still only about 75% there. I think I forget that a bowel resection is quite a major op, and not only do you have to recover from Crohn's flare up, but also from the surgery.  

Good luck to you.  I hope the op goes well and keep us updated on your progress. If you have any questions about what to expect etc let me know.  I'm always happy to talk Crohn's with someone who knows what I'm talking about!

So sorry!! Don't know why it posted my reply twice?!

Can I please say that although you may receive your date for surgery, it can be cancelled at the very last minute, so please be prepared.  I rang in the morning as instructed for the following day to find out what time I needed to be in, and then 1 hour later they rang and cancelled, when you have your hopes set on knowing that the surgery is going to make you feel better,it can and was devasting, it's not going to happen to everyone, but I know friends tried to warn me, but what they didn't understand was how much I was relying on it, and then to have it snatched away.  On a good note, it was January last year and the hospitals were full of Flu, and I was later in hospital with someone who had been in at the time, and they said it had been awful.  So fate maybe, anyway I hope it is soon, and I hope it goes well.