Thursday, May 30, 2013

Is This Thing On?

Huh, I still have a blog here. One would assume I'd forgotten all about it and, in a way, one would be correct in that assumption. What the heck have I been doing? Life, my friends. Life. So what brings me back here to the blogosphere?

I got an email.

Yep, I got a very nice email from a person who read the blog and wanted to ask me some questions. I was pretty excited to get that email because I've always invited people to reach out if they felt inclined and it's been awhile since anyone took me up on the offer.

It also reminded me of why I started this blog in the first place! Sure, it's kind of neat for me to be able to go back through and have a record of my journey. The real purpose was always to share as much as I could about my experience with other people. I wanted IBD people to know they weren't alone out there. I wanted people to know they could have an ostomy or a j-pouch and still do things like distance running. I wanted to share information and, if I was lucky, spread a little hope.

I honestly didn't think anyone was still reading or getting anything out of my ramblings anymore. Then I got an email. In my typical fashion, I crafted a rather long-winded response which I'd like to share here. Names are withheld to protect the innocent and all that but, I feel like this is a nice synopsis of where I am right now.

Nice email writer,

Ok. Finally settling in for the evening and have a few moments to write a more complete response. Sit back and get comfy....I am wordy!

First, thank you for writing to me! It was a good reminder that I need to update the blog because people do actually still read it and get benefit from it. I will be sure to do that....hopefully tomorrow.

The question of whether to go forward with the j-pouch is such a tricky one. Every situation is so different and I really think the only person who can decide is the person who has to wake up and live it every day. That would be you. :-) What I can do is share my experience and give that to you as one more piece of the puzzle to ponder.

I am honestly doing really well. It took time, and some rocky moments, to get here but here I am. Since my take down in January 2012 I've run three half marathons. I keep up with two very active little boys (oh the driving involved!) and I'm a full time student.

I really don't think about my j-pouch much at all. I have to pay extra attention to keeping hydrated but, I had that with the ileo too. I eat what I want, though I do try not to eat too large a quantity of veggies in one sitting as it seems to cause some cramps sometimes. I'm a vegetarian though, so I still take in plenty of fruits and veggies, beans, etc with no problems. I am lucky enough to not need any meds (Immodium, Metamucil, etc) or skin creams. We got a bidet toilet seat early on and it has been worth every penny. I would say I make 6-8 bathroom trips over 24 hours but, never in an urgent have to hurry way. I'm now able to sleep 6-7 hours without needing to get up unless I've had a lot to eat late in the evening (then it's more like 4-5 hours). I was running with my husband on Monday and told him this is the healthiest I've been in seven years. :-)

I won't sugar coat things. The process was rough. Surgery 1 was ok, especially once the ostomy learning curve leveled off. Surgery 2 is really tough. The recovery can be long and it takes a lot out of you. Take down surgery itself is physically easier but, there are lots of things that can mess with your head along the way. When the new pouch is going through its growing pains, it is frighteningly like UC with the time on the toilet and dreadfully waiting for something to go wrong.

So, that's my story. I have no regrets. People like to add "except I wish I'd done it sooner" to that statement but I've moved away from that. The process was basically a walk through hell. I think I had to get as sick as I did in order to endure the whole thing. That may not be true for everyone but, that's how I feel about it.

I guess my advice would be to take your time and search inside yourself to see what feels right for you. Do you feel like it is worth the potential risks to change away from the ileo? That is really all you are changing. I wouldn't call having the ileo bad but, I have to admit I was glad when that phase of my process was over. It was the right thing for me but, that doesn't make it right for everyone.

It could be that this wasn't helpful at all, LOL. I just hesitate to ever tell anyone what they should do in these situations. There are so many factors that make each of our cases unique. In the end, you have to wake up and live your decision every day so it has to be the thing that feels most right to you.

Feel free to write again if you like. I'm happy to answer any other questions. I figure if I had to go through all of this, at least I can have helping other people as a positive outcome. If you're comfortable sharing, I would like to know what you end up deciding to do.


There it is. How I am doing a bit over one year after take down. I would also like to add that I am waiting with fingers crossed for my notice of acceptance to nursing school. I've been working my butt off (haha!) with lots of awesome but tough science classes and stuff so, hopefully it's all ready to pay off. My other bit of news is that I am running in a team relay event here in three weeks. It's this 24 hour thing with six runners covering something like 120 miles. I have 17 miles broken up over three sections. I'm pretty pumped about it. I am also kicking off an attempt at training for my first ever full marathon. Keep your fingers crossed for me that I'm tough enough to hang with it and finish my goal race in October.

Big thanks to those of you still checking in and those who are new and finding me for the first time. It does mean a lot to feel like I can do something to help people through the crappy situation we are stuck in. (Witty pun, woot! Ok, not really).

5 comments:

  1. Hello,
    I started reading your blog when I had my ostomy. I underwent a lot after I had my son (born 10 weeks premature). And I had done a google search to see if there was anyone else out there like me. My endometriosis had somehow torn a hole through my colon and I had to have part of that removed temporarily. But that didn't solve the problem. After the surgery (1 week after my son's birth) they found more abcess in my abdomen which had to be drained out with a drainage tube. I also had a PICC line put in and brought home because I needed antibiotics for 3 weeks. The hole caused air pockets in my abdomen and a collapsed lung, which was there when I delivered my son. I had a chest tube in me when in the delivery room.

    Anyway I had my reversal/take down surgery December 28 and was running again 4 weeks later. But during the time of the ostomy I had lots of questions and concerns about running with an ostomy. I give you lots of credit!

    I ran my fifth ever half marathon today June 2

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  2. At the request of many ostomates, I have developed a further section on my website (www.living-with-a-stoma.co.uk) for Blogs - similar to the Forums section. Therefore, I am writing to enquire if you wish to add details of Life Take Guts to this new section.

    My website is proving extremely valuable to suppliers, support groups, medical consultants, stoma care nurses, and ostomates, both here in the U.K. and internationally, and the response and feedback has been overwhelming. I look after my website on a voluntary basis, and there would be no financial cost involved for you. My website is not for financial gain, but to provide ostomates with as much support and information as possible.

    If you are interested, could you please email me - jean@living-with-a-stoma.co.uk - and I can provide you with the necessary information for you to be included. I look forward to hearing from you. In the meantime, take care Jean.

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  3. i have suffered with horid UC since last June. I have tried 2 infusions of remicade and have been on predisone zince Oct. needless to say the weight gain and fat face proving enough fo drive me slowly insane. i have an.appt with a surgeon on 3/17/14 for removal of colon. i am scared. i appreciate your info and thank you for the info.

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  4. I'm Liz, my husband and share an account. I will be having a total colectomy in a week or two as well! No definite date yet. I have had UC since I was 17 and am now 41. Remicade worked great for me until I had an allergic reaction. I've had different bouts with flare-ups, but since this last autoimmune anomaly almost killed me, I am ready for the surgery. I used to be very healthy between flares. I love to run, bike and swim, although I've never been fast or naturally athletic. I was searching blogs for info on how I might be able to begin running and biking (and swimming?) again. Thanks to all who blog and comment, it is helping me! Cherri- I feel your pain! I don't recognize myself anymore. My face must weigh 15 of the 20# I've gained from prednisone and my experience with acute kidney failure. I used to have hair all the way down my back and cut it way short because it was falling out so badly. Prayers for you. Liz

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  5. If anyone is really facing problem in living life with an Ostomy bag attached to their lower abdomen then they must use the Ostomy Lingerie as a part of their cloths so that they don't face any problem in wearing their favourite dresses and they don't even need to wear an extra beltto support that bag.

    ReplyDelete