Most FAQS: Two-Step Surgery

by on Friday, June 20, 2008 6:43

File this entry under: Jpouch Surgery

There are many questions about what “type” of surgery Mark had.  We will try to explain below, however, there are many options and many reasons for those options.

Mark had a two step surgery.  Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction or in doctor talk Ileal Pouch Anal Anastomosis (IPAA) or Ileoanal anastomosis (J-POUCH to us common folks). with a temporary loop ileostomy until the jpouch heals (’takedown’ is 2nd surgery).   See J-Pouch Illustrated to understand how the temp ileo works until takedown is done.  His surgery time frame were:

July 2007 – lapro IPAA.

July-October – Lived with Temporary Ileo.

October 2007 – Takedown surgery, temp ileo gone.

We are asked to clarify why it seems the U.K. and U.S. do surgeries different. We don’t have the technical reason, but this is how we explain it when asked:  I’m not sure in the U.K. why it is done in so many steps. I do know in the U.S. that some people have one step, two step or three step depending on their health status (really sick people have 3 steps b/c their health can’t handle the more advanced surgery all at once so they do it in pieces to help the body heal).  Also, doctors do the steps via what their training is and what they are comfortable doing. Here we have two camps: surgeons that do lapro and those that do open surgery.  Since we’ve had some international attention to the blog, we’ve learned that the surgeries although the same really do vary between countries.

Photo via: J-Pouch Illustrated

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Mark vs. Bungee Cord

by on Thursday, June 19, 2008 18:51

File this entry under: random

Since we love showing photos of wounds and such on this site, here is a story for you: Mark is out of town visiting family and he sent me this text image.  When asked he said he had fight with a bungee cord. When asked who won the fight, he said the bungee cord.  And in the words of his 10 year old nephew over text the nephew wrote “OMG, It is gross”…hehe OMG – I don’t use text talk, I think I’m too old:)

Most FAQs: Elective Surgery?

by on Thursday, June 19, 2008 8:23

File this entry under: FAQs

One frequent question asked is if Mark’s surgery was elective?

Yes, Mark’s surgery was technically “optional.” He could have lived non-functionally sick with his colon forever or he could have had the “optional” surgery.  A common question and one we asked is When did you know time for surgery? There are many posts out there like this one Jpouch vs Ileostomy and these help you feel not so alone in this journey.  Mark tells his story in this post: For those not forced into surgery, and Stories of surgery decision making . And although we get this question a lot, just because we sorta answer it here, you can feel free to write us at any time to talk about your decision process. For us making the decision took 3 years and was really, extremely difficult.   We have lots of experience offering our experience on making the decision, so use us as a resource if you need.  You don’t have to go through this decision alone, that was our mistake!

Here is a Video that is really well done that talks about making the decision for surgery, and her two step surgery is shown and discussed.  Technical and emotional are both addressed.  Really Recommend to Watch!

Bad Bowels Fundraiser

by on Thursday, June 19, 2008 6:07

File this entry under: Ulcerative Colitis

To all our U.K. readers, check out Stew. He is living healthy with his pouch and has a fundraiser bike marathon he is in, and he needs just a little bit more donation to reach his goal. It is all to make money for his charity:  The IA Support Group.

Stew’s Bike Ride Fundraiser

Stew writes: “Thank you for visiting my fundraising page. Please dig deep and sponsor me online. The purpose of this ride is to a raise funds for this worthwhile cause buy mostly to raise awareness for this support group for those who have had this operation, because of either Bowel Cancer,Ulcerative Colitis or Chrones Disease .

The thought of riding for over 500km on a narrow bicycle saddle will not be lost on fellow “Pouchies”. I just want to illustrate that we are capable of normal activities post opperative, and give a little encouragement to those who may be feeling that the end of the world has come as they know it. At 59 yrs I am not an avid cyclist and only bought this bike second hand to complete this challenge,I shall be pulling a home made trailer of my own design  containing my camping and catering supplies, anticipate the journey will take 5 to 6 days and I will try to update my progress enroute. 

Training rides in the winter were very trying and the suport I received kept me going. I am told the tax break in gift aid changed at the end of March so don’t put off what you can do today. Thanks to all those supporting me so far. Don’t wait till the final day to donate it’s much more encouraging seeing what I am aiming for than hope it will come in after the event . A penny a kilometer is arount £5.00 and the tax man will add around 125p.

A special thankyou to Wendy who runs my local Folk Dance club who donated the proceedes from her raffle to the fund £81 raised – brilliant.

A trial run up tp to Adeburgh around 55 miles and back the following day over last Bank Holiday went well and thanks go to friend Dave who kept me company for most of the way. Donations to me personally have escallated in the final few days before the off and many more have placed pledges – not included in the totals quoted on these pages, so the final totals will I am sure fare exceed my expectations, A big thanks to everyone for their support.

It’s done – 349.2 miles at an average speed of 8.3 mph

Started Saturday 7th june at around 6.00am outside Aldeborough Newsagents who kindly took my photo as proof. Saturday became one of the wettest and miserable days I can remember, finishing some 65 miles later about 20 miles short of my target. Wet through and cold I spent a difficult  night under canvas, and after repacking all my gear to separate the wet from the dry I set off late. Covering around 55mile again well short of my target miles. I realised that towing the trailer I would not be able to catch up my schedule, so all nessecities were packed onto the bike and the trailer was left behind near Stamford . Two good but hard days followed and I resorted to B&Bs and for the final day I abandoned all but essentials for the final push. Completed on Thursday 5.00pm ish I was reunited with my wife, leaving the symbolic entrance into Aberdaron till the Friday morning for pictures etc.

On the way I got Post Offices to verify my bike trip computer and stamp a sheet with the date and Post Code  to verify that I had indeed carried out the journey. My friends at Cathedral Squares Square Dance Club have come up trumps Boosting my sponsorship by £126.00

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: IA will receive your money faster and, if you are a UK taxpayer, an extra 25% in tax will be added to your gift at no cost to you.

So please sponsor me now!

Many thanks for your support.”

Funny Stages of Acceptance video (fixed)

by on Thursday, June 19, 2008 0:47

File this entry under: Ulcerative Colitis

This should make you laugh for 3 minutes.  So appropriate, and we’ve all been in these stages before I imagine. I was laughing outloud when a friend showed this video to me.

 Send us comments and tell us if you’ve laughed your worthless bowels silly!  Which stage do you relate to best….depression makes me laugh (ironic, no?):

If the YOU TUBE video below doesn’t work try this link: 

 http://www.boreme.com/boreme/funny-2006/giraffe-in-quicksand-p1.php

[youtube=http://www.youtube.com/watch?v=ND6iSRlG5m0]

A picture speaks a 1,000 words

by on Wednesday, June 18, 2008 11:08

File this entry under: Ulcerative Colitis

*Be sure to send Cynnycal your best wishes, being on her 2nd round with colon cancer – you can never get or give too much support*

Through sharing Mark’s surgery, we learned the power of images can really say what needs to be said and words aren’t needed.  And I’ve been haunted by this image that is attached here.  I think it is the first time I really conceptualized “colon cancer” or even “cancer” for that matter.  The woman in the photo is on her 2nd battle with colon cancer, and in her blog she is so raw and honest about what these experiences are for her.  About this photo she writes in her blog Cynnical and The Colon Chronicles “And this is how I normally can be seen while on chemo:Don’t I just look thrilled. There ya have it. I guess when I’ve bitched in the past about how people don’t seem to fully grasp that you’re “sick” or not well, if you don’t look like the typical chemo patient…didn’t lose your hair, no outward signs of illness….Guess this time around chemo made sure I got some outwardly visible signs.”

Mark and I would always joke (went from said seriously to eventually a joke) that if you are going to get sick with something chronic and life altering, you better make sure it is a mainstream disease like cancer, because people don’t respond to your struggle if they don’t know your disease. So having UC is kinda obscure, we found most people knew Crohn’s sorta but not UC.  And as Cynnical points out people not grasping your sick unless you fit the stereotype of what sick should be.  I guess this is a HUGE reason why need more advocacy on chronic disease.   

Also, it is time we all start addressing the very real issues of self-esteem and the related symptoms of disease:

Self-esteem and IBD is discussed “Some of the emotional challenges that are typical of those diagnosed with IBD are:
1. Self Esteem
2. Self Image
3. Depression
4. Anger
5. Grieving
6. Sense of loss that your life isn’t ever going to be the same
7. Feeling alone
8. Feeling different
9. Shame/Guilt
10. Embarrassment
(*Some of the items on this list were offered in Sherry Porat’s presentation at the IBD conference on Nov. 3,2007)”

Politics and IBD

by on Tuesday, June 17, 2008 19:49

File this entry under: Ulcerative Colitis

Here is an interesting link to story about bringing about IBD awareness Bag of Politics.  What is interesting is that the author isn’t an IBD patient (I don’t think), and yet she/he seems to have a good idea of the issues. It reminds me why it is so important that we all get out there and do advocacy for IBD awareness.

Check it out Bag of Politics.

Crohn’s & UC Disease FILM

by on Tuesday, June 17, 2008 8:17

File this entry under: Ulcerative Colitis

Wow.  We’ve just found this incredible film about CD and UC (mainly CD).  This film looks like something we need to get right away. Has anyone seen it yet? Watch film trailer here.

Crohn’s Disease
A very inspirational movie to those living with Crohn’s Disease or Colitis and has received attention from various medical authorizes nationwide (e.g. Crohn’s and Colitis Foundation of America).  http://www.trueguts.com

Getting Healthy Story #3 – Jeff

by on Tuesday, June 17, 2008 4:02

File this entry under: Getting health Stories

To represent the others who are living, surviving and having their own journey to get to good health. We will be including  “Getting Healthy Stories.”  Below Jeff has shared with us his journal of his health. It is a story of struggle, love, support, disappointment and mostly this guy just keeps getting back up.  He is a truly remarkable voice to hear.  Grab something good to drink and get to know Jeff below:

jeff_s_uc_oddessy

 

 

 

Photo via: rbackowski