Waiting = Depressing

Hey Alibee.. goodness you poor thing. I'm not as young as you, but I can totally empathise. Not having an especially brilliant day today myself (am 7 days post surgery from an end ileostomy) and not sure therefore if I'm going to be of any help at all.. but all I can say is that what you're going through is totally normal and completely expected. I've spent the last 8 months of my life feeling just like that.. exhausted, miserable, grumpy, unable to really eat properly, uncomfortable and unable to sleep and in a horrible period of indecision about what to do.. I found I totally lost sight of how I was feeling and what 'good' felt like. Now I've got my stoma back I'm feeling better - although still in recovery from the surgery etc, my bowel feels a hundred times better.

When I finally got to the last few weeks before I saw my surgeon to make the decision and then again to the surgery date it was tough. All I could do was keep busy and try to walk as much as possible. Even on days when I felt terrible I would just go out with my dog and walk for miles (slowly I might add!) but it was my saviour, especially as I live in a really lovely area. I've got 2 boys to keep me distracted but I've given up on work and exercise so dog walking is pretty much it whilst they're at school... but it really did help. Yes I was exhausted and felt pretty awful.. but just being outside in the fresh air with my beloved dog makes me feel more human again and made me feel more calm.

I think you just have to hang in there, keep busy as possible and find something which gives you a feeling of calm - whether that's walking, do a puzzle or anything just to calm your mind.

I'm not sure you'll ever have a warm fuzzy feeling from your surgeon though and not sure if you should expect it.. they are 'fixit' people and just want to get the job done. It's very black and white for them. All you need is trust in them that they'll do a good job and good communication - mostly that they're listening.

I think you also have to guide the surgeon about what you want to do.. what are your options? are you looking at a total colectomy or a stoma? it's a 2 way process and you know your body and how you're suffering. Yes she may have a different opinion to the first surgeon - so be prepared for that. But that's good as you need options right now.. then you can debate the various options available to you. Given your initial surgeon suggestions, it's unlikely she'll say surgery isn't an option for you - but may have a different way of doing things or want to do something slightly different.

I understand that you're desperate for an outcome and a solution to all of this - I felt (and still feel) exactly the same. But just take a deep breath and hang on in there.. those days will pass eventually and before you know it you'll have more options on the table and then it's decision time. It's all good. Take care hun. Big hugs across the pond xx

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Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Is your Duke surgeon Dr. Thacker? I have her and feel she is very competent. She just did my first surgery and I had very few problems.. (an incision opened up)
I think she is one of very few that use dissolvable staples there, I think it's a good thing. I compared notes with someone else who went to UNC and my experience overall seemed better pre surgery at Duke. Definitely go with someone you are comfortable with though! I will warn you they didn't have any rooms for me the night after surgery! I gather this can be a common problem there! Well, if you have any questions feel free to ask.

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DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

hey look some more people from NC! i had my surgery in charlotte, at presby downtown, my husbands team worked out of their then, and it's great to have someone who works at the hospital like that!
duke and chapel hill are both good hospitals, my husband used to do a lot of critical care runs to chapel hill, and when he briefly trained on the flight team he went from chapel hill, he really liked the people there.
anyway, it's your decision whether to have surgery or not, the surgeon won't tell you no.
and i totally understand what you mean about the days dragging by! i was all over the place, worrying about things that could go wrong, stupid things, (could i do a cartweheel after surgery?) getting things ready packing bags weeks in advance, then having to unpack cause i needed the stuff, lol.
just crazy stuff the whole time.
how to make it better, i'm sorry but i can't give you any advice, i think it's one of those things you just have to wait out.
although keeping busy may help
good luck!

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UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!