This is going to sound weird, but yesterday was my last post-op appointment with my surgeon and today I'm feeling a little down and blue. It's been 6 months since I had a proctocolectomy with a permanent end ileostomy. As far as he is concerned, I am doing great physically and he doesn't want to see me again unless I am having problems. That's great news, right?? Then why am I bummed out?

I'm sure I'll be fine tomorrow, but right now . . . not so much. I think I'm just reflecting on the last 6 months. Thru this whole ordeal, I have laughed, smiled and managed to amaze my friends and family with an upbeat and positive attitude, even though I had a really rough time in the hospital and a pretty tough recovery.

Here's a recap:
I was supposed to have a one step J-pouch.
After they removed the colon and constructed the pouch, the stapler malfunctioned and the pouch didn't attach to the anus as planned. They spent the next 2 hours trying to hand stitch it together, but to no avail. My body just wouldn't cooperate and the tissue "shredded". After 5 hours on the table, they abandoned the pouch and gave me an end ileostomy and a barbie butt. Post op I was anemic and had to have 3 units of blood. The pain wasn't all that bad - the morphine pump was my friend. It took almost a week for my bowels to wake up, so I was terribly nauseous and vomiting. They had to put an NG tube in (while I was awake -ughh) and a PICC line for TPN. After that, I developed an infection in my lower incision and ran a fever of 105 for 3 days. Things did get better and on day 16 I was finally able to eat.

On day 19 I went home and was doing well and starting to get my strength back, but 6 days later, I was in the ER with excrutiating pain and swelling in my left leg. An ultrasound confirmed a massive deep vein thrombosis (DVT) so I was admitted and spent 5 days on lovenox, coumadin and complete bed rest to prevent the clots from breaking loose and traveling to my lungs and heart. I have never been so scared. And OMG - it was so painful. When I finally was able to stand up and walk (with a cane), it felt like my leg was going to explode. It took about a month for the pain to subside completely. I'm still on coumadin, have to wear a very attractive compression stocking and I still have to go to the lab and get blood drawn every 2 weeks - I'm really tired of getting poked. They say it could take a year for the clots to completely dissolve. UGHHH!!

And oh yeah, about 3 months post surgery, my hair started falling out. . . a lot!! More than half the hair on my head fell out. Thankfully, I had super thick hair, so it wasn't that noticable to anyone but me (and my hairdresser). But still, it was devastating to see handfuls in the shower every morning. It has stopped falling out now and it's growing again - in fact, I have little baby hairs standing up all over my head :-)

As for the ostomy . . . it's really not that big of a deal. Sure, it's been an adjustment, but for the most part I have had no major problems. I eat what I want, I get an average of 5-6 days between wafer changes and I have haven't a leak in over 4 months (knocking on wood here). I'm so very, very thankful that I am cured of UC and colon cancer (I had high grade dysplasia). 99.9% of the time I feel very blessed. My situation is a little different though. I wasn't sick when I went into the hospital, so my quality of life didn't improve, it just changed. Getting my strength back took longer than I expected, but all in all, the ostomy has not prevented me from doing what I want to do and there is NO way I will allow it to stop me in the future.

So, after this long diatribe, I think I've figured out why I'm bummed and throwing a private pity party. It's because if it wasn't for the DVT, I would feel like I was fully recovered and I wouldn't be a "patient" anymore. I'M SO SICK OF BEING A PATIENT!! Thanks for letting me vent. The pity party is over!!

Jennifer

Hi Jennifer,

It's no big surprise to me that you are feeling like you are. It's not just the milestone of being discharged from your surgeon's care, it could also be a touch of PTSD. You have been very stoic and laughed and joked your way through all of this for the benefit of your family and friends. How long did you think you could keep this up before it all finally caught up with you? You have been through an enormous amount of crap this last 6 months and at the time your mind shut down to the horror of it all so that your body could concentrate on getting better. Now that you are physically on the mend your mind has finally had time to ponder on what's happened.

I think having a pity party is a healthy, normal reaction to the stress of what's happened to you and is all part of the healing process. However, if you find that this feeling stays with you for longer than a day or two it might be time to seek medical help to get you past this little bump. Coming here and offloading is not only great for releasing all those pent up feelings but it is also good for the soul. We are all here for you.

Hope tomorrow is a brighter day for you. Come back here to vent if it isn't or to post a rave if it is.

Take care

Shell

I agree with Shell. You've been 'carrying' around all those people. It has to be a little disconcerting - they're HEAVY! Why aren't they losing weight? Why do they insist on still being carried around? Well, you know the answer, you won't LET them lose weight and you haven't LET them climb down so they can start carrying you around for a while. And then throw in all the complications and road bumps - it's going to do a number on you.

I think most people here can really relate to being tired of being a patient and being tired and being poked with needles. It's just wearing. Add to that, that for the most part we look like we're just plain damn healthy even when we don't feel it. I do think that PTSD can sneak in very insidiously so we don't even realize it - it just feels like we're having more and more 'off' days.

But, a big BUT - you actually seem like you're doing quite well. It doesn't seem like you've plunged to the depths of dispair yet. That's a good thing. I think all you need is this pity party and to be aware that if it gets any worse that maybe you should address it.

Going through all you've gone through and not being sick when you started your journey is also very difficult. But again, you seem like you're mentally doing perfectly well! Good for you Babe!

Thanks for the update and for inviting us to your (pity) party.

BTW - what are you doing up at 3:30 in the morning?!?!?!?

kathy

I hope you are feeling better and happier. I had the same thing about 6 months out, found myself crying for not reason, and say why now, I never cried once through all the surgeries etc. I think it is like shock syndome, you have been through a HECK of a lot of stuff and none of it fun and you have weatherd it beautifully, laughed when you wanted to cry and acted like the strong one and never complained. You are AMAZING! Yes I agree you just need a pity party and someone to hug you and a good short cry and then get on to the living of life, not sick and no more surgeries. This is the beginning and an ending of a long and painful struggle. Grieve that and put it in the past. LEt us know how you feel and take care.

Tanya

Hello again -
Thanks so much for the replies and the support . . . you gals are awesome! It's taken me a few days to post again, mainly because I've been busy out enjoying my life!! I didn't think my funk would last very long, and it didn't - it just surprised me that of all days, it happened on a day that should have made me happy! Believe me, I haven't been putting up a front for anyone and since this all began, I've had my share of teary days. The irony is I have been feeling really, really good both physically and mentally for several months, so it really caught me off guard and I felt like I got sucker punched.

Each time I come to these boards, I am always amazed at the out pour of support and kindness - especially from you veterans. I'm very grateful for all the valuable information that everyone shares. I have learned so much, but I have also come to realize that I am incredibly fortunate. SO many of you have been thru hell as you endure multiple surgeries and drugs in an effort to bring your symptoms under control. SO many of you have been battling your disease for years and years. My heart goes out to each of you - you've been thru far more than I will ever experience. Sure, I had a tough time while I was in the hospital, but once I got home, (aside from the DVT), I have had a pretty remarkable recovery as far as the ostomy goes. Like I said before, having a stoma has not stopped me from doing the things I want to do. . . and as a matter fact, in many ways I think my life is better now. I'm lucky - I dodged a major bullet and I know it. I have really made an effort to take extra good care of myself physically and emotionally. I've taken full advantage of my time off and spent lots of time going to the beach, exercising, reading, yoga, spending time with friends/family, volunteering at the local CCFA office, etc, etc. , so all in all . . . it's been the best summer "vacation" ever!!

Thanks again for being here!!

Kathy - I was still up at 3:30am because I had gone out to a late dinner with my best friend and after 2 glasses of wine and 3 cups of what was supposed to be DECAF . . . I was wired! I'm pretty sure the waiter was giving me regular coffee!

BTW - Shell, thanks to you, I giggle every morning when I am putting toothpaste on my toothbrush . . . remember why?

Hi Jennifer,

I'm so glad that your pity party was a short lived one!

Yes I know why you're getting the mental graphics and I'm really sorry if my warped sense of humour has left an indelable imprint in your mind's eye!

Humour helps me get through the day and I'm a firm believer in laughter being the best remedy. We have all developed a "toilet" humour here that only us colonically challanged can appreciate!

Take care and keep up that positive attitude!

Shell

Oh Shell, puh-leeze don't apologize . . . I absolutely love and appreciate your warped sense of humor!! I have one too and I laugh as much as possible!! It's a real "asset" for folks like us :-)