Diagnosed 1 year ago and just had my first surgery

[crohnscrisis]

Hi there,

I'm new to forums and not really sure what to say but I wanted to share my story, or at least a part of it so that people can learn from my experiences and so that I can hopefully give some good advice and get some back in return... I'm still new at this whole Crohn's thing

I was diagnosed last October with Crohns disease, although I've been told that I've probably been suffering with it for about 10 years (I'm now 27) and for the past year have been treated like a guinea pig with lots of different drugs and tests only to finally result in surgery 3 weeks ago.

I suffered with severe inflammation of my Ileum that was causing a narrowing of my colon and I had developed a fistula along with it. Despite steroids, immuno-suppressants and infusions, I ended up having my Ileum removed and my fistula stitched back up. I was in hospital for 10 days and suffered a slight complication resulting in trapped air where they stitched me back up (according to a CT) so I had to stay in a few more days than originally thought.

I'm going back to work tomorrow and I'm a little nervous because only a few weeks ago I couldn't stand up straight and I still get tired walking around. Don't get me wrong, I'm really bored having to stay at home all the time and I'm glad that I'm becoming useful again, but there's still so much I can't do.

Does anyone have any good advice after having surgery? I know I need to take it slowly but I'm desperate to get on with my life again. I started a blog to keep my sanity and it's all about my story (with gory pictures included) crohnscrisis.wordpress.com if you want to know more about me.

Thanks
x

 

[ronroush7]

Hi. I would be careful about lifting anything heavy for a while. As you said take it easy for a while. Are you on any vitamins to help with the tiredness?

 

[crohnscrisis]

Hi!

I did try and have an iron infusion before my surgery to help with the weakness and tiredness because I'm anemic but I had an anaphylactic shock to it hahaha so haven't had anything since.

I'm taking calcium chews because I was told that with all the weight I lost, my bones would suffer but nothing other than that.

No heavy lifting I know, I was told nothing that I have to lift with two hands. I just want to do everything I can to get back to normal quicker but I'm not stupid enough to jeopardise my health. I'll try and take it easy

Thanks!

 

[ronroush7]

Welcome. Best to you.

 

[valleysangel92]

Hello, welcome to the forum

So, firstly, get some blood tests to check for vitamin deficiencies, I know you said they tried an iron infusion and you had a reaction, but there are a few different ones that can be used so they should be able to offer an alternative to the one you had before. The surgery you had can lead to a B12 deficiency, as they sometimes remove the part of the bowel that absorbs this, so I would get that checked now, and then have it done again in a few months incase you develop an issue with that. B12 deficiency can make people really tired and weak, but it is really easily treated with vitamin injections, so its a good one to keep an eye out for.

As for post op advice, listen to your body, if you're tired, rest, if you're hungry, eat what you fancy (not too much fibre at this stage though). A phased return to work may be the most advisable thing, if your work place will allow it. You could start doing reduced hours or only doing 3 days a week to see how you manage and then as your strength gets better you can do more.

You shouldn't be lifting anything heavier than a kettle, and you need to be careful if bending, try to crouch rather than bending at the waist. When you're getting out of bed, you should be pushing yourself up with your arms, not pulling with your core and make sure that if you are in pain, you take things easy and take appropriate painkillers, good pain management is a really important part of surgical recovery.

If you have a desk job, try to get up and have a little walk at least once every couple of hours, as you will still be at a slightly increased risk of blood clots, and make sure you are drinking plenty (my IBD nurse tells me 3 litres a day minimum) as people who have had bowel surgery/have IBD get dehydrated much quicker than those who dont.