Lap Total Colectomy+ End ileostomy

Hi Lisa, I am so sorry to hear you are in so much pain when you eat.  I am no expert as like you I did not have much idea when I came home from hospital.   To be honest it is still early days for you, and I have to be honest I also lost so much weight as could not eat so also weighed under 8 stone.  I really think it takes a good 3 to 4 months to start to feel your old self again, and you will, although you do not think so at the moment.  Why don't you get in touch with the stoma nurses again?  explain again that you have pain when you eat.  I know I was given a list of foods to avoid, but gradually I now eat most things, it did take while though, and I know some foods do no agree with me now, so I am sure in time it will be the same for you.  I think I would ask your Doctor if you can have some stronger pain killers and explain to her she/he may be able to advise you also.  When you think about it you have had a major op and unfortunately it takes quite a time to recover, and I know how hard it is, I could hardly walk with the pain and feeling weak, but you will get better..this time last year I was having chemo/radiotherapy and felt dreadful, and also Nov, like you had an op, but now I feel fine and so will you in time.  I am sorry I am not an expert on what to eat, but as I said perhaps the stoma nurses will help you with that one.  

Oh Mary thank u for getting back to me with your response as it's given me alot of hope, I actually weighed myself today I've gone down to under 5 1/2 stone like u said I'm so weak no energy, the only time in pain free is when I do not eat which isn't a solution. I'm so glad your feeling more like your normal self, that's so promising & hopeful and I'm just really pleased for you in general like you said it's a big op and with you having treatment prior it must have been very difficult for you, so glad your at the other end and feeling stronger, atm I'm very down, crying , I feel like I'm letting my daughters down I can't physically stand long enough to make a meal, I'm worried about my bills which I've feel began with, I went into this so positively and thought get it over and done with and hopefully get back to employment, I expected some bumps in the road but this has floored me quite literally, how did u go on with eating the thought off food now knocks me sick, I will get in touch with my stoma nurses I leave them a message shortly, 

Hi Faith. Please get in touch with your surgical team or your colorectal support nurse? You shouldn’t be in this much pain and there should definately be some output from your stoma. If you’re in a lot of pain with no output then you may have a blockage and that needs medical intervention. I’m tempted to tell you to go to A and E to get checked out. If you click on my name then you’ll see that I had some issues after surgery and was readmitted with an infected fluid buildup around the rejoin. They checked my CRP with a blood test - it should be under 10 and mine was into 3 figures.

Please don’t soldier on. The support desk on the number below will be able to give you lots of financial advice but you shouldn’t be losing weight and unable to face food?

Please get help and let us know how you get on?

Take care

Karen x

Totally agree with Kareno62 you must get back in touch and get this resolved.

You can’t be left like that .

Have you been seen recently by the consultant or GP ? 
Please phone both today .

Take care ,

Court 

• Thank u for all ur help and support as up to now ive just tried to deal with it myself, I did ring stoma nurse yday she called me back today I also spoke to my consultant team the week b4 mainly colorectal nurse she's arranged an ultra sound which was done last wk and and camera down my throat but that's only on 24/8, my stoma nurse has arranged for drinks like complan and also some tablets lanzoperdale just to help whilst I'm waiting for camera, so that's good news and knowing somethings being done too helps massively, I really appreciate everyone advice and support greatly as I felt like I was in this on my own, you've all gave me inspiration and hope so hopefully brighter days ahead ( sorry it sound morbid I don't mean it too but it's been the hardest challenge ) 
• don't know how I've put bullet points on so pls ignore,
• thanks everyone it means a lot xx
• lisa 

Hi Lisa, Pleased to hear that you have been in touch with the stoma nurse, I find them so helpful, and obviously you needed some help, support and advice.  Lets hope that that it will all be good news for you.  Please keep us all informed on how you get on.