Waiting = Depressing

Hi All,

I haven't posted recently, but I do visit the site daily for inspiration to keep me going.

I have colonic inertia and some mild pelvic floor dyssynergia. I have been through the whole gamut of testing and everything at UNC Chapel Hill, met with a surgeon, and he said surgery "made sense" now, and he basically gave me his card and told me to call if/when I was ready to schedule it.

I decided to get a second opinion because my parents wanted me to and because I didn't get those warm fuzzy feelings from the surgeon I was hoping for. I'm sure he would do a good job but I decided to seek out a second opinion from a female surgeon at Duke University.

I asked my motility doctor to refer me to this other surgeon for a second opinion, so she contacted the surgeon who told her she wanted all of my records to review to determine if she could assist me. It took a few weeks for her to review my records but I finally got paperwork in the mail confirming that I have an appointment with her on August 5th.

Here is my current issue: The days feel as if they are dragging by SO slowly, I feel like August 5th will never get here. I feel worse every day. I am young, turning 25 in August, but I spend every day the same way. I wake up, try as best as I can to "acclimate" to how bad my stomach feels that day, and then I spend the day loafing around trying to keep my mind occupied. I watch tv, clean, refill the bird feeder...sometimes I even plan my whole day around running a very pointless errand like going to the grocery store. It is so depressing. I went shopping with my mom this weekend and I was so exhausted (from doing nothing!) that I was walking several steps behind her the whole time. I have been moody and mean to my family and I feel terrible, I feel like I never have anything to say to anyone. I cry a lot. I feel like I am so overcome by all of this that my brain is only working enough to go through the motions of the day. I know a huge part of it is because I am waiting for this appointment, and not knowing what the surgeon will say is driving me crazy. I am praying she will say surgery is an option because then I will have two surgeon's opinions and that will make my family feel much better about going through with it, but still, the worry is there that she will have a completely different opinion and then I am back to square one.

I was wondering, do any of you have some advice for how to get through these couple of weeks until my appointment? Does anyone else ever have bad days (or weeks) like this? And how do you get through it?

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

Ali, glad to hear from you. i'm so sorry you're having such a hard time and i completely understand how you feel. i felt the very same way during the few mons before surgery and as more time progressed i felt like wanting to explode. waiting is the worst!

i think that if the surgeon told you to come, it def means there's something to talk about and surgeons only talk surgery. otherwise it'll be just a total waste of time for her.

hang in there sweetie. i know it's hard and i know too well what you're going through right now. i cried my eyes out that time too. but you'll make it and Aug 5th will be here before you know it!!! love and hugs to you!! thinking of you, pls keep us posted.

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Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop 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!

Hi everyone - thanks for the replies, they really helped! I think I am just in one of those places where everything has built up and I needed a day or two to get it all out, it's definitely a cycle. I'll take the advice of each of you and just keep on treading water here until August.

Tryingtokeepmyheadup...yes! My surgeon, the one I have the second opinion appointment with, is Dr. Thacker! I have been trying to find information about her, as far as her personality, and it's great to hear she is competent - that is very similar to what I heard about her from one other person. So do you like her overall? It's been hard to find much information on any of the surgeons at Duke, particularly Dr. Thacker. Anything you can tell me about her actually, would be a huge help!

I am curious, before she did your surgery - what kinds of tests did she run? I know we have different issues but I know they often order similar tests before doing these types of surgeries. I'm sure I've been through most every test imaginable but I know all surgeons work differently.

Where did they stick you after your surgery? I hope you eventually got a room!

Ali

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!

Ali, Dr. Thacker trained at Mayo clinic in MN. That was the main reason I chose her. You may have to wait for awhile to see her in the waiting room because she seems to take all the time she needs with each patient. Good if you are the patient, bad if you are waiting to see her! I hate being rushed in an appointment so I appreciate that about her. She seems upbeat and I feel like she actually listens to me. She could tell right away I had done my research on the j pouch and from that agreed to do my surgery without any additional testing (she did have my medical records) (I was soooooo done with testing) She also let me skip the colon prep and I got to drink a gatorade the morning of surgery vs. my friend at UNC had to do a colonoscopy the day before, with a prep, so basically had to go 2 plus days without food. I believe Dr. Thacker is progressive and knowledgeable, but cautious. She also let me drink right away and eat the next day because she thinks making you wait just helps the bowels fall asleep. She said she's gotten a j pouch / colon surgery out in 2.5 days! I was in 6 days but I think that had more to do with trying to get on oral meds that worked. The first night I stayed in the area where I went in for surgery... a divided space that a curtain covers... loud and no fun! Oh, and the food sucked lol. Whoever her trainee was threatened me when I tried to refuse a shot in my stomach right after surgery but I don't blame Dr. Thacker for that. The lapro surgery gave me severe shoulder pains right after I woke up but I hear that's common and they gave me good meds to help with that.

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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!