J-pouch Life

Hi Everyone,

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 (inlcuding 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

Hey Readers!

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

I love the logo for Jackie’s new blog! If you have a minute, go check out her posts, and hopefully she won’t be a stranger around these parts.

Check our her blog here.

This is not me in this picture. But it was so ridiculous I couldn't pass it up.

I’m so over this colon. Its like a pair of jeans that I’ve had forever that I refuse to get rid of. They were great and useful, but now they have a ton of holes in them. But for some reason, I’m hesitant to throw them out. Granted throwing out my favorite denim is a tad different than removing my colon, but you know, same principal. With all the problems and discomfort that I get from this dang thing, you’d think that I’d be more than jumping at the bit to get rid of it. But I’m not. I’m not at all. I’m more than pumped about the possibility of getting rid of it and feeling healthy and maybe getting part of my life back, but the road to get there just seems so daunting. It feels endless. Not only does it feel endless but the road has a damn colostomy bag involved with it. The road is gross. The road is filled with potential problems and questions and uncertainty.

Can you tell I like metaphors?

I have been pondering this surgery for a few weeks now and in that time I have talked to a few nurses and asked a few people at various stages in their surgeries a barrage of questions. I’m pretty sure my last Q an A session ended with “Did you wake up with a butt tube?”  So I’m not afraid to ask questions, but am I a little afraid of some of the answers? Affirmative.

Every time my stomach grumbles, I think about chopping old the ‘ol colon. Every time I sit on the toilet. Every time I second guess eating something. Every time I worry about the location of a bathroom. Every time I am humiliated in one way or another by this disease….I know I need this surgery.

Much like many people out there who are in my diseased bowel shoes, the surgery sounds like a god send. It sounds like an answer to all of our problems, aside from one thing. The one thing that makes me and I’m sure others second guess the WHOLE thing. The one thing that makes me consider living like this for the rest of my life because I can’t even fathom it. You know what I’m talking about. I swear I could just not even say it and we’d all be on the same damn page. But for those of you who are reading this with your head cocked to the side in confusion….its the colostomy bag. Yea, that thing. That super gross thing that makes us all feel disgusting and subhuman. It terrifies me. Its ugly, its stuck to you, and its def a damper for intimacy. I mean seriously, I know people get around it, but how? How do you even think about sex with that thing attached to you.

Yea I said it.

I think I’d probably swear off sex for the entirety of stage one of my surgeries. I cannot imagine living like that permanently.

Yea, I said that too.

I’m not one for sugar coating. I still don’t know what I’ll do just yet. You know, through all of this, since the very beginning of diagnosis I have told myself it can’t get any worse. And without fail, every single time, it has gotten worse. I have had the most ridiculous UC journey, that if it wasn’t me, I might point and laugh. (Eh maybe not, but I would probably talk about me behind my back). It almost seems fitting that I go out with a bang. That this redonkulous ride called UC would end with the removal of a large organ and the attachment of a colostomy bag. Everyday, slowly but surely, I’m getting over this…but I’m not gonna like it.

P.S.  I’ve found the overwhelming urge to write about this crap probably more than usual. So I’m gonna do Jpouch double time and update every so often here and more frequently over here:  http://BloodPoopTears.wordpress.com/

My name is Sara Randall, I’ll be 25 years old next month, and I have been living with an illeostomy bag since September 9, 2009. Obviously my story doesn’t start there. When I was in high school I was energetic, super athletic, always on the go, and to self conscious for my own good. When i first started to notice blood when I would go to the bathroom I was one, to embarrassed and two, way to “tough’ to mention it to my mother. Months went by until I finally told her about it and she took me to the doctor. He had me poop in a dish and he told me, yup theres blood in there. Well being that self conscious teenager I was I refused the colonoscopy saying “No one is stinking anything up my pooper!”  Right around the same time i got my first lovely kidney stone.

After that I continued on like there was nothing wrong. I wasn’t having really any discomfort that I could tell just the blood. I graduated and went on to join the ARMY. I love it, it was my childhood dream to be a soldier! I made it through basic training effortlessly, with the exception of my second kidney stone and became a generator mechanic. After graduation I met my now ex husband. We were married after knowing each other maybe 6 months. He was horrible, enough said on that topic! Once at my unit the bleeding got worse and along with it came stomach discomfort. To make a long story short I had the necessary scopes and no diagnosis could be made. I was medically chaptered out of my dream job.

So with my broken heart and my bloody poop i started a new journey. I left my ex and filled for divorce, I enrolled in school and did a lot of “living it up” for a few good years with no real problems other than some blood here and more there. I didn’t think to much of it. I became more comfortable with the fact that this strange thing was happening and I would joke about it with my close friends.  I continued to get the freaking kidney stones. I turns out the older I get and the more of them I get the bigger they become. In the span of maybe 3 years I had to have 3 lipotripsy procedures to remove some I couldn’t pass. What a pain in the ass that was!!!!

Almost 2 and a half years ago I met my now boyfriend Mike. I was kidney stone free and still bleeding when I would go to the bathroom. A year into our relationship Mike went out to California for a summer internship leaving me in North Carolina. The month he left things started taking a turn for the worst.

With the Army, a failed marriage, countless kidney stones, twice as many moves and job changes, as well as tons of other challenges to boring to get into here, I became this “tough bitch” as my mother calls me. At this time I was a personal trainer, my second dream job. I had been a personal trainer for about 2 years at this point and I was really into eating right and training hard. It was my life and I loved it. I was trying to train so I could eventually do a figure show so I was training harder and eating better than I ever had before. When the bleeding began to get worse I ignored it, I didn’t want to admit that something was going wrong because in my mind that would mean weakness.

About three weeks after the increase in blood the stomach pains and diarrhea started. Still I though I could tough it out and it would pass. I didn’t have health insurance at the time and I sure as hell wasn’t going to wrack up a bunch of medical bills. I went out to visit mike and I didn’t tell him was was going on because I was embarrassed.

A month later I was sicker than ever. Read the rest of this entry »

With the risk of becoming an “over poster”, I was getting a bit freaked out at staring at my face when I logged on to the site. I wanted to share this with you all. I found this website last night (while my UC was preventing me from sleeping) called Uncover Ostomy. There is also a Facebook fan site. Anyway I found this site pretty awesome because well lets face it…this chick makes having an Ostomy HOT!  Crap, if I could look like her,  I’d sign up to have my ileostomy sooner…I think facing this future, especially as a woman I fear intimacy and self image the most and I found it overly comforting to find Jessica’s story, her bravery, and her “take me as I am” attitude. I think this could be a big boost to us all that are living with this or facing it in the near future. On her facebook fan page there were T-shirts that said “Bag Lady” and “No Colon, Still rollin”….which I LOVED.

Continuing with the same theme, I’ve been thinking about what I’m going to do to make my 9 months of living with the ostomy easier. I’ve heard a lot about the Phoenix Belt as well as the belts/wraps from OstomySecrets, Stealth Belt, and Ostomy Armor.

Has anyone tried any of these products? Any thoughts/reviews?

Side note: Dennis over at the  ucvlog.com has teamed up with his friend Nadia to collect ostomy supplies to donate to Haiti. If you have unused/new ostomy supplies or any other medical supplies check out this site to learn more about how to donate them to those who need help in Haiti. If you’ve got any questions, feel free to contact Nadia@UCVlog.com.

Hi I’m Jackie. I’m a 25 year old woman child from my native of Michigan. I have a bit of an interesting UC story so bear with me while I get my intro out of the way. I was officially diagnosed with UC in May of 2009, but had symptoms for easily 10 years. In October 2006 I was also diagnosed with Multiple Sclerosis. I’m a bit of an auto-immune allstar. Long story short in 2009 I was admitted to the hospital 4 times and the ER 6 times for my UC. Asacol gave me a pericardiac effusion resulting in a lot of pain and emergency surgery around my heart.

After that the goal was to get me on an effective therapy to get my UC under control. I was and have been on steroids since June of ‘09 and have tried Asacol, 6-MP, and Methotrexate. I can’t take any of the biologics because of my MS. My UC has never been in remission since diagnosis and has proceeded to get worse the last few months. My home GI referred me to Cleveland clinic to talk to a specialist who gave me good advice and advised that I should consider surgery. My home GI them told me that the doctor at CC was an idiot and that no surgeon would ever preform surgery on me. Needless to say  I was a bit conflicted.

I met with Dr. Remzi last Monday in regards to surgery against the advice of my home GI. Dr. Remzi was great and urged me to consider surgery. After throwing myself a pity party for a few days, where my only guest was myself…and I didn’t even get cake….I decided he was probably right and I should schedule my surgery. He said most likely he’ll be doing a 3 part surgery over 9 months with my first scheduled for March 25th.

So I’m just at the start of this journey…its going to be a long super sucky one…but I know there are a lot of you out there with me.

oh. Ps. I’ve attached a picture of what I USED to look like…you know before 8+ months of steroids….I hope to revisit this again someday

p.p.s. I make typos a lot. Deal with it.

Mark and I are thrilled to announce we are expecting a baby girl this summer!  Mark had his surgeries 2 years ago, and we wanted to share this news that after surgery life does go on. We are so excited to have Mark healthy to enjoy the birth of first child.  And for those jpoucher’s curious, we were able to conceive naturally without infertility issues (Mark is 34 years old).  Below is our ultrasound at 18 Wks that shows us a healthy girl 6″ long and she weighs 1/2 pound.  We joked at the ultrasound that it was okay if she didn’t have her colon to just get it out of the way. Oddly enough the doctor didn’t find our humor as funny! Then we explained that Mark doesn’t have his colon, blah, blah, blah and we realized how uncommon it is to not have a colon and that colon humor is just not the funny other than to likes of us!

I think we’ve all been at points of struggle with these diseases where we felt hopeless. For most of us, the J Pouch operation gives us our lives back. It gives us an opportunity to live it. It gives us an opportunity to hope.

I have done volunteer work for the Crohn’s and Colitis Foundation of America for the past six years. My mom told me about CCFA when I was first diagnosed. We joined and I was an inactive member for years (ie: I got the newsletters, paid my dues, but I never got involved.) Part of the reason for that lack of involvement was that I was  so sick, I could barely function, let alone have any extra energy to devote to a charity…even to one that might ultimately help my quality of life.

So here I am today, on the committee to plan the CCFA walk for my Northwest chapter. I’m super-swamped at work, have a full social life, and aside from a minor flare a few weeks ago, I’m doing pretty well health wise. Things on that front are rarely 100% for me, but I am happy and I am thrilled to be able to do something to help others who are suffering now as much as I once was.

For those of you who are able, I urge you to get out and volunteer. If not for CCFA, for another cause close to your heart (or guts).