Saw surgeon last night and from his point of view all has gone well (apart from the infection etc) and he said he didn't need to see me again.  Believe me in the nicest possible way I hope I never see him again !  I am still having loose bm's but not as often so hopefully that will settle, although my GP gave me antibiotics this morning for a persistant cough and they always have a dramatic effect on my stomach so getting my bowels into some routine may take time !  The surgeon also said I should contact my GI to talk about maintaince meds before the Crohns has a chance to take hold again.  Sobering thought. Still not back at work GP signed me off for another 4 weeks, all this time off, wish I felt well enough to enjoy it !

I had a right hemicolectomy on June 13th 2001, shortly after diagnosis. I went into hospital not really knowing what to expect, thinking I would wake up, with a plaster on my tummy to cover an appendectomy sized scar, and I'd be home in a day or two. How wrong I was. I woke up the day after my op, hooked up to monitors and drips etc. with a 10 inch scar from above my belly button, down to my pubic bone! I was so shocked, I would have been sick if they hadn't emptied me out so thoroughly before the op! Never had I felt pain like it in my life, I had a drip of morphine going in to me, which didn't really numb the pain, rather it just made me unable to care about it if that makes sense? That drip was there for 9 days, 9 days I really can't remember much about!!! I couldn't even get out of my bed, and was laid on my back for 18 days after the op, I went down to just under 6 1/2 stone in weight, my lungs filled with phlegm and I needed physio to get me breathing properly again. I couldn't eat or drink anything for 3 1/2 weeks after the op, and I felt real exhaustion. About 6 weeks after the op, they let me home, in a wheelchair, but that night, was rushed back in, and I spent another 4 weeks there. After the initial pain and problems caused by the op however, and when I'd regained some energy and strength, I had a period of probably 2-3 years virtually symptom free, no pain, my energy levels had gone up and my inflammation levels down, the diarrhoea had reduced significantly, and I felt 'normal' like my friends. The surgeon told me that although they had removed about 4 foot of bowel, they couldn't remove all the infected parts, and so I should still expect to have some symptoms, but it might not ever affect me like it did. But when I had recovered, I was more than happy with the result, yes, it could have gone better, but, I was/am so grateful for the period of wellness they gave me. I suppose the point I'm trying to make is, even though it may take a while to recover, and I won't lie, its a truly harrowing experience full of disgusting, agonising twists and turns, it does get better, and easier, and hopefully you will find this too. Just hang in there, keep your chin up, and hard as it may be, DON'T LET IT BEAT YOU DOWN. Remember: You have Crohn's, you have no choice in that. But you do have a choice over whether Crohn's has you.

That's good news Linney...sounds like you have just been unlucky with the other problems you have had ( hopefully, they'll all soon be a thing of the past! I see the surgeon on Thursday so will let you know how I get on. I've been taking azathioprine for a few weeks now, with no problems.

Jboi, sounds like you had a verrrry tough time! I am so thankful for how well my surgery and recovery have gone. Although after the op the pain wasn't pleasant, I was always aware it could have been a lot worse! And I agree with you about the morphine, I couldn't wait to get rid of it and have 'normal' painkillers, which were much more effective. 7 weeks on, I am amazed at how well and normal I feel - not something I'm used to, which I'm sure you can all relate to. So, I'm just enjoying it at the moment and looking forward to the future. I'll continue to build my knowledge, and if the crohn's does attack again, I'll cross that bridge when/if I come to it. The fact is, it may never come back. But I always like to prepare myself for the worst like I did with the surgery...so when it actually came to having it, it didn't feel like a big deal, and I was pretty calm and patient throughout.

Nic x

Hi folks, I haven't posted for a while cos guess what - I'v been back in hospital.  this time my heart rate was through the roof and I had pneumonia, another week in hospital being pumped full of antibiotics which my body wanted to get rid of from both ends - great.  Anyway after my second round of antibiotics at home (the bombardment in hospital didn't clear it) I am beginning to feel human again.  My energy levels are just above zero (I had a unit of blood in hosp as my iron levels were very low) and am going to ask for another blood test when I see my GP tomorrow.  Got to have 24 hr ECG in a couple of weeks to check that the heart prob was being caused by the infection (fingers crosssed).  Can't believe I have had so many probs since the surgery just waiting to see if it did any good cos just looking at an antibiotic sending me running to the loo and my poor bowels have had no chance to get into any routine.  Lets hope this is the end of it all and we can all enjoy our Christmas.
xx

Aww Linney, you have had such a tough time! I hope you managed to enjoy your Christmas and haven't had any more problems.

Not much to update from my side...I still have diarrhoea, mainly after I eat, which is proving to be a problem when I am not at home. And the area of my stomach around my scar is still slightly swollen and numb....I wonder how long this lasts?! I had my op almost 14 weeks ago. I'm beginning to think that maybe it's scar tissue, in which case, I would seriously consider lipo. As long as I keep my weight right down, it doesn't look too bad, but as soon as I put on even as much as 1lb, I start to become really aware of how out of shape it looks. Don't get me wrong, I am still on cloud 9 and so grateful for where I am in life at the moment.

xx

Hope all is well Linney xx