Please take about 10 minutes and take this survey designed by professors at the University of Georgia.  In my non-jpouch blogging life, I am an Assistant Professor at University of Georgia and I’m conducting research on the implications of social networking support sites (jpouch.org and jpouch.net) focused on the experiences of those preparing for or who have had jpouch related surgery (including the stages of temp ileo, or permanent ileo’s).  I am working with a team of Ph.D.’s from Social Work and Health Communications on this study.

Click to access survey link here:   Social Support Survey for Jpouchers and Ostomates

My motivation behind this research survey: From my personal experience with Mark and in the early days of using jpouch.org, and then our development of the photo blog here at jpouch.net, I began to realize these support sites are CRUCIAL to the coping and support through this journey.  See, back when Mark was preparing for surgery his ostomy nurse told him not to use online social supports because they were negative and people only went to them to complain.  We obviously disagreed with her and since that day I have wanted to use my Ph.D. and research skills to show the medical field the importance of social network sites for jpouch related needs.   I really want to help the medical field understand how important these sites are to healthy healing so that they will support them optimally.

Thank you so much for your time!

Sincerely,

Megan Lee, Ph.D. (also know as Mark & Megan)

Kimberly Clay, Ph.D.

Jeong Yeob Han, Ph.D.

Margerite Fenwood, M.S. Student

These posts might also help out:

• February 10, 2010 -- Making Ostomys HOT! (3)
• February 25, 2010 -- Commenter with Questions (13)
• February 13, 2010 -- Take a walk in my shoes (93)
• December 21, 2009 -- Update (6)

We have a long comment from Cynthia C. and she has a handful of really great questions for the jpouch community. Would you take a few minutes to read her post and see her questions at the end.

Thanks so much!

Megan & Mark

# Cynthia C. Cynthia C. says: February 23rd, 2010 at 11:52 am

Hello Everyone, My name is Cindy and I was diagnosed with Ulcerative Colitis in October of 2009. I first started having symptoms in February of 2008 while I was about 7 months pregnant with my son. I thought the mucus in my stool was a result of being pregnant with a very large baby. I felt fine, and had no other symptoms so I really didn’t have any clue I was developing Colitis. I’ve been healthy my whole life, active in sports and exercise, and at the time I had been a vegetarian for the last 12 years. I started eating meat again around the time I first noticed mucus in my stool. After I had my son, I noticed the mucus came back about three months later. But still no other symptoms. That went away, but in the fall of 2009 the Colitis came back and it was no joke this time. First it started with mucus. Then I began to notice I started losing weight and finally, I began to get really tired. I was starting to get worried, because trips to the bathroom were becoming more frequent and hard to hold. The next and scariest thing that started happening was the blood. I began to bleed little at first but by September of 2009 I was bleeding a lot. I began the process of “freaking out” with the idea that I had colon cancer. I can’t even tell you how scary it is to ponder the cancer cloud hanging over your shoulder. I would just look at my family, my new son and become so utterly depressed. My husband began insisting that we make an appointment with a doctor to really find out what was wrong so I could stop this fantasizing of the worst. I knew I was secretly avoiding this because I was so scared to find out what I had. Finally though, I scheduled an appointment and had my first colonoscopy done. I was so scared to go through with the colonoscopy! It turned out not to be so bad, but man, I’m sure a lot of you already know how disgusting the laxative is to drink. It’s the worst part. I never finished it and it turned out to be fine. We were told the results of the colonoscopy right after the procedure and that’s when I found out I had colitis. No cancer! It’ didn’t hit me right away and I really don’t know if it still has, even though I’ve been through the pain and suffering of having Colitis. My GI doc prescribed Asacol and Prednisone. After three weeks of suffering on Asacol, we discovered I was having a serious bad reaction to it. I became so incredibly sick. The colitis got worse, I could barely walk, I began seeing these intense spots through my eyes, my teeth looked like they were becoming transparent, I was losing weight, and then my liver became inflamed. Finally my GI realized it was the Asacol and I was then put on 6-MP. What a disaster 6-MP was. It had the same effect the Asacol had on me. Suddenly my life was at a standstill. Now its Christmas time and at this point I had been extremely ill for three months. My husband had almost used up all his vacation at work, and my daughter and son were feeling the effects of my illness. The whole family literally became depressed. We were all just so scared and i know I was definitely suffering from depression. I couldn’t spend any time with my 1 ½ year old son and he wanted me so badly. I’m a stay home mom, so he had been used to being with me every day. I know that Prednisone was having an effect on my moods and ignited the depression in me. I got to the point that I couldn’t even laugh anymore. It was like there was a block on laughter in me. Finally, my GI took me off the 6-MP because again my liver was inflamed. I now weighed 114 lbs (I started off at 138) and it’s now January of 2010. The prednisone I was on was horrible. I couldn’t sleep at night and I was so shaky all the time. To top it off, it wasn’t even holding the colitis at bay. By mid January things were getting bad. My husband and I began discussing surgery. I decided I didn’t want to be on meds anymore. This was extremely important to me. I don’t want to take medicine my whole life and then find out 1) they don’t work anymore or 2) I’ve developed some other disease from them, and 3)I wasn’t about to take Remecaid after reading up on all the side effects. So, we scheduled an appointment with the surgeon and set a date to proceed. I couldn’t believe I was about to do this. But if it meant no more colitis, then it’s worth it. I’ll do anything to take this feeling away!! My surgery was scheduled about a month away. At this time I was so sick, it was almost impossible to get out of bed. I was now 100 lbs. I looked like a skeleton and I had dark circles under my eyes. My surgeon decided to bump up my surgery ASAP so now I was scheduled for it to take place in one week! We went over different options and decided on a permanent illeostomy, which gave me the option of getting the j-pouch surgery when I was back to normal weight and my body was healthy again. I decided to just give the “bag” a chance. It was a great relief to know I could go back and get the j-pouch surgery at any point in my life. The week before my surgery I was so scared and nervous. I could not fathom that this was happening to me. I was very excited to get the surgery done, but that emotion was mixed with an intense fear. I’ve never been in the hospital before except to have my two children, so I was really frightened. I was also feeling this strange loss of the fact that I would no longer have a colon! My colon, the thing I was born with, was just going to be taken out and incinerated! Weird. Anyways, the surgery was not as bad as I imagined. The pain was intense at times, but nothing like having a baby! I just upped my epidural dose or took more pain pills and voila! The pain was gone. Being in the hospital for a week was probably the worst part. Even though I had some really awesome nurses, (and one HORRIBLE one) it was so awful being stuck in the bed and not able to move around. And then there was the BAG. I just kept reminding myself that the colitis was gone. My colon was gone too. Dealing with a bag of poop was okay compared to not having a life with my family. I was lucky too. A woman next to me was dealing with cancer. And people in Haiti were suffering big time. Now it’s been three weeks and I feel pretty good. I’m still sore, but I can go places, clean the house, take care of my toddler Finn, and laugh again! My family is back on track, no more sadness in the house, and I can drink coffee again! My husband was an unbelievable support. He not only held down the fort, but took care of our toddler, my 17 year old daughter, worked two jobs, and continued working on an MFA, AND took care of me the whole time. I wish I could give him a vacation to Mexico with unlimited fish tacos and beer. I’m on a low residual diet for a while and can hardly wait until I can eat regular foods and have some wine! The most wonderful feeling is not feeling the colitis in my body. It’s incredible. And the best part, is it will never come back! I’ll be off steroids in one day. I didn’t find that changing the bag was all that difficult. I can hardly wait to find a bag that feels comfortable and suits my needs. Clothing though is becoming a huge problem. My pants close right over the stoma. I need advice what to do about this! I’m not about to wear jeans that go up to my waist! Do they even make those anymore? Plus, I’ve lost so much weight nothing fits and I don’t want to buy anything until I gain my weight back. So thanks to anyone who took the time to read my story. I’ve left out so much believe it or not! I have so many questions to ask all of you- I’m hungry for advice! I appreciate any responses.. Thanks again!

1)Anyone have advice on some sort of “cover” for my bag to not only hold it in place but to conceal it a little better. It’s so annoying how the plastic clasp can hang between my legs. I’m looking for just some sort of band.

2)Advice on clothes!

3)What type of bag works best for you?

4)When can I expect to feel normal, with no more pain from surgery?

5)Did any of you have back pain after surgery? My back is killing me!

6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off. Okay, I’ll leave it at that for now.

Sorry this is so long! Thanks! Best, Cindy

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• November 10, 2009 -- Just Dance! (8)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

These posts might also help out:

• March 27, 2010 -- Colston Thomas Mills (4)
• February 15, 2010 -- I’m so over this colon. (13)
• February 10, 2010 -- Making Ostomys HOT! (3)
• June 6, 2009 -- Let’s just call it … IBD (8)

We wanted to welcome Jessica to our community. Below is an email we received from Jessica and like many of us, she has had many struggles with UC and she is starting her first surgery Sept 25th.    See the link to her website below.

Dear Mark,
My name is Jessica, and have had Severe UC for 5 1/2 years. Have been on and tried every med out there, and am facing the 3 step surgery here at the end of Sept. The first one is scheduled for Sept 25th. I am a sea of emotions, and have been soaking up information online. I came across J-Pouch Life, and am loving everything about the wbsite. I have recently started a blog on blogspot as a sort of diary for me and my husband to help us better see the progress from where I was to where I will be. I am very interested in blogging more broadly maybe through ya’ll if my story could help somebody else out there as so many stories on your website have helped me! Maybe you can take a look at my blog, and get back with me on how maybe I could do this. Here is the link. Thank-you so much for your considerstion!

Please visit Jessica at her blog http://jessicaronson.blogspot.com/

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

For me it is offers 3 main things: 1) It eats up bad smell quickly and doesn’t just cover up the smell it removes the smell, 2) The scent of the spray goes away quickly in the air, 3) It is all natural, non-aerosol, animal testing free.

I highly recommend you try this product, you should be able to find it at your local drugstore.

These posts might also help out:

• February 11, 2011 -- Belladonna Wars? (7)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• July 23, 2009 -- Happy Thoughts 101 (15)

This month jpouch.net has had readers visit from 84 Countries! Welcome readers from Slovenia, Chile, Uganda, Kuwait, Iran, Bahamas, Taiwan, Germany, India, Canada, USA, UK, Ireland, Netherlands, Israel, Mexico, Hong Kong, Italy and more! Please reply by “Add a Comment” and let us know what country or state  you are from and why you are visiting jpouch.net!

These posts might also help out:

• August 4, 2010 -- Western Diet Causes Inflammatory Bowel Disease (0)
• February 19, 2010 -- Blood, Poop, and Tears (3)
• February 8, 2010 -- A little insight on my insides. (13)
• December 13, 2009 -- Welcome Lisa to the “No Colon Club” (1)

JoyceS. No Colon Tattoo

We know you are headed into surgery Elise, and we wanted to wish you a safe surgery and a speedy recovery! You’ve been such a wonderful friend on jpouch.net, and now you’ll soon be giving advice to others headed into surgery.

These posts might also help out:

• November 23, 2008 -- HI EVERYONE! (3)
• August 8, 2008 -- Mark 9 month Jpouch Update (49)
• December 29, 2011 -- Loss & Gain (2)
• July 20, 2011 -- 2 Years Post TakeDown (6)

Merry Lynn with son on his first birthday.

We wanted to introduce you to  Merry Lynn, she has been living with colitis for 10 years, for 3 years she has been in remission, and just learned she has high grade dysplasia. Her dysplasia means she will be having a colectomy to remove the risk of colon cancer. Her story is being shared on her blog and provides an important perspective into having surgery because of cancer risk not because of living with UC without remission.

Below is an email Merry Lynn sent to us introducing her story:

Hello my name is Merry Lynn Guy and on my blog I just list my name as ML (it’s what most people call me) . I was recently told that I need to have surgery due to the high grade dysplasia that is now presenting after 10++ years of having colitis. http://road2singledigitjeans.blogspot.com/ was originally created when I was attempting to be in a bloggy world weight loss group but then the group fizzeled so I had the blog name and title so now it is a blog about the medical path I am about to travel. I would be happy to be on your blog roll. I enjoyed reading Natalie’s Storyand have learned so much about what I am about to live through from your site. THANK YOU for creating it.

I have met with two different surgeons thus far and the verdict is the same.
The toughest part of my journey thus far is coming to terms with this verdict because I am a colitis patient that has been in full blown remission for just over three years. I have been living life to the fullest and now after my colonoscopy on 6/4/09 and some pathology confirmations I am heading towards surgery NOT because my disease is out of control but due to length of time having it and its now path to cancer.

I hope you will stop by and place me on your blog roll. I have yet to find a UC patient blog or site that talks about having to have surgery because of the same or similar presentation as I. So maybe my blog will be helpful to another.

ML

Please visit Merry Lynn’s Blog and give her the wonderful support that jpouch.net readers/bloggers can give!

These posts might also help out:

• March 11, 2009 -- March is Colon Cancer Awareness Month (5)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• December 29, 2011 -- Loss & Gain (2)
• July 20, 2011 -- 2 Years Post TakeDown (6)

Teen Outsmarts Doctors

In a timely fashion to Liz’s post on Lets Just Call it IBD, I just stumbled on this story this morning on the yahoo home page.  Apparently a teenage female had been sick with IBD-related symptoms for many years. The doctors called it IBD, probably colitis. She took tissue from her intestine to her high school biology class and she found signs of inflammation indicated Crohn’s Disease.

Read the full story here: Teen Diagnoses Crohn’s Disease Before Doctors in Science Class

Lesson of this story is that we know our bodies well and we must be active participants in the identification and maintenance of our health care.

These posts might also help out:

• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• December 29, 2011 -- Loss & Gain (2)
• November 4, 2010 -- Fear Monger, MD (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)

Natalie with her Partner

Hey Readers,  We recently met Natalie who has just had a colectomy after living with UC. She has created a blog and we wanted to let you know about it.

Email from Natalie below:

I have recently had a colectomy in March and a reversal just 2 weeks ago tomorrow, following years of having ulcerated colitis.

By going on your blog, it really helped to see what was entailed into the first and second operation. The pictures were especially helpful as I wouldn’t have known what a stoma looked like or how it was activated, and I really feel that it helped me come to terms with what I would be going through with the insight and information available on this website.

So I would like to offer a massive Thank you from me and my partner and family as it was a great help to us all and I have used the link on my blog to hopefully help other UC sufferers.

Here is the link to my site.

www.copingwithcolitis.blogspot.com

Many thanks,

Natalie

These posts might also help out:

• February 19, 2010 -- Blood, Poop, and Tears (3)
• February 8, 2010 -- A little insight on my insides. (13)
• December 13, 2009 -- Welcome Lisa to the “No Colon Club” (1)
• July 2, 2009 -- Jpouch Happenins’ (5)