J-pouch Life » colitis http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 2 Years Post TakeDown http://www.jpouch.net/2011/07/20/2years-post-takedown/ http://www.jpouch.net/2011/07/20/2years-post-takedown/#comments Thu, 21 Jul 2011 05:02:55 +0000 Brevin http://www.jpouch.net/?p=2636 It’s been two years since my takedown and, as a society, we still don’t have flying cars or cloned dinosaurs. That I know of. I mean, I check the news daily to see if any of these scientific breakthroughs have become reality, but no. Nothing. Come 2034, I better have robot legs with jet thrusters. For now, I’m pretty happy with just settling with the crazy medical awesomeness that is my j-pouch. I’ve had no major issues like, I don’t know, space scurvy (which I imagine space pirates with space-pouches get).
This is what did happen, though:

The Dreaded Pouchitis: Not as dreadful as space scurvey

You see, it took me 2 years and a trip to Argentina to get pouchitis. While there on a business trip, a steady diet of meat, more meat, and some meat, coupled with small breakfasts, very late dinners and no snacks in between, all upset my plumbing. I might have gotten a tad dehydrated as well and yes, I am now 34% fluent in Spanish. My last two days and the flight back was like an attempt at setting a world record for most bathroom visits. They should have punchcards for bathroom stalls where ten visits gets you a free sandwich, but I secretly hope that they will never sell sandwiches in bathrooms. The first thing people told me when I got back to the office (aside from “oh we thought you left so we divvied up your stuff”) was that I noticeably lost weight. Well, I did. Like 12 pounds.

In hindsight, Argentina gave me plenty of clues that they had it in for my j-pouch. This stall at a soccer/football stadium didn't even have toilet paper roll holders, let alone toile paper. An omen, if you will.

When I had this increase in frequency and odd pressure associated with the urge to push (you know, when you need to give a little push to gently remind your bowels that it’s showtime), I thought it was just a souvenir of Argentinean culture and not anything too bad. On behest of my friend (who happen to have been one of my nurses), I went to visit my surgeon to get it checked out. A cold finger poke later and she said yep, all signs point to pouchitis. Pouchitis is inflammation of the ol’ j-pouch, so it might feel like colitis again. Oh j-pouch, you trickster you. There was no something-something-osis (where there is some tightening, which I took as being bad), so I got a short dose of Cipro and I was fine literally two days later. Seriously, this is a cake walk compared to everything we’ve been through.

Pictured: me doing pushups in the middle of nowhere with pouchitis. See, still better than UC. Not pictured: a bathroom or a sea monster.

Scars: A roadmap to victory!

The scars themselves are minor footnotes in my journey to recovery. I could tell people that the scars are from when I was in a bar fight with a grizzly bear, but I take pride in where they come from and what they represent.

15 pounds heavier; it all went to the cankles.

 

It’s The Little Things: Being an undercover “Normie”

“Normies” are normal people. Having this newfound sense of health, I’m going in deep undercover into their shady, secret underworld of “physical activities” and “not being too concerned with where the bathrooms are”. And I have to say, it’s the little things that make you appreciate being healthy. This point really hit home for me when I recently went to a Rammstein concert and spent the entire show trapped up front in a wave of bodies, able only jump around and bang my head to rock out. I didn’t once get that sense of urgency or accompanying anxiety, and it was awesome. You know when I pulled this off last? 2001 when I was still pre-UC. I feel blessed to have this additional sense of perspective.

Supporting the Cause: Poop

Do you happen to live in the San Francisco bay area and want to be part of a supportive group but don’t like the idea of a sterile, boring support group and your expectations aren’t too high? Well we’re trying something different. I have joined forces with Gwendolyn, a friend and Team Challenge mate, to create a supportive social group for people who are affected by Crohns and/or Colitis. Check us out at http://www.facebook.com/SFSSG!

The SFSSG!

Progress, yo!

I censored the mooning. You're welcome.

 

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]]> http://www.jpouch.net/2011/07/20/2years-post-takedown/feed/ 6 “My Hole” http://www.jpouch.net/2010/08/26/hole/ http://www.jpouch.net/2010/08/26/hole/#comments Fri, 27 Aug 2010 05:20:10 +0000 Lizz http://www.jpouch.net/?p=2516 So, I went to see funny-lady Margaret Cho tonight. If you know anything about Ms. Cho, you know she does some killer, hilarious impressions of her Korean parents, and that she’s a little raunchy. She spent the better part of the evening talking about “her hole.” Her anus, to be exact. She started the show by telling the crowd how she’d lost her voice, had seen a therapist who told her to drink olive oil. This was causing the interesting side-effect of causing her to poo an “olive oil mist”. There were other “hole” related jokes, which I as a Crohn’s/J-pouch patient always appreciate. Not that we are very shy around here, but I realized that I hadn’t yet told you guys about my most recent physical therapy appointment for my hole. As I mentioned in a previous post, the crap-o-gram I had revealed that my anus (hole) doesn’t open properly when I try to poo. It spasms sometimes, which can be really painful, and my surgeon sent me to a very specialized therapist who deals with pelvic problems. She is the loveliest lady, really. She is professional, funny, and warm, and not at all awkward. You know as a GI patients, we are all used to having people’s fingers up our ass. If it’s not a finger, it’s a scope. So, when this lovely lady suggested that a “hole massage” might help loosen up my tense arse, I agreed. I told her I was basically up for anything to avoid another surgery. So, first, she had me get into child’s pose (all my yogis out there know what I mean) and she massaged my lower back, my buttocks, and, the area around my hole. The left side was tight and painful, and the massage did help some. She suggested going into the “inner sanctum” to see if it was more of an internal thing. It was. My hole spasmed on her hard core. She did some internal massage which was…interesting. I think it helped for a few hours or maybe that whole day. It just always feels like there is a pinch on the left side down there-a tightness that I can’t get to relax no matter how much I try.
Anyway, the adventure continues. As I continue to get my butthole molested, let’s hope I see some progress.
What I won’t do for a good poo…

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]]> http://www.jpouch.net/2010/08/26/hole/feed/ 4 Home from Surgery #1 http://www.jpouch.net/2010/04/05/home-surgery-1/ http://www.jpouch.net/2010/04/05/home-surgery-1/#comments Mon, 05 Apr 2010 13:48:58 +0000 Jackie Z. http://www.jpouch.net/?p=2412 Hey All,

I’m FINALLY home! I had to get readmitted for pain control, you can check out the whole story at my other blog, www.bloodpooptears.wordpress.com. But I wanted to let you all know that I took some pictures, they are kinda graphic as usual. So if you want to check em out…here they are. Surgery # 1.

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]]> http://www.jpouch.net/2010/04/05/home-surgery-1/feed/ 1 Colston Thomas Mills http://www.jpouch.net/2010/03/27/colston-thomas-mills/ http://www.jpouch.net/2010/03/27/colston-thomas-mills/#comments Sun, 28 Mar 2010 05:30:10 +0000 Eric http://www.jpouch.net/?p=2405 Dear fellow Jpouch.net readers, hello and how are you? I know you don’t know my full story and I apologize. It’s mainly because I’m too lazy to type it all up that you haven’t seen a complete posting from me. If you’ve stuck around long enough, you’ve seen my hernia (which is still there), you know that I keep track of numbers, that I’m healthy again and like to ride bikes, and that I’m the guy behind the pouchoscopy entry on Wikipedia. But you don’t know that I spent most of 2008 in the hospital (or at least it felt like that) or the specific circumstances surrounding my bout with Ulcerative Colitis. I promise to write that all up for you soon. In the meantime, drumroll…

I’m a father!

So welcome to world baby Mills. His name is Colston Thomas Mills, born on 3/6/2010, he was 8 pounds 7 ounces (big!) and he’s perfect. Like Mark and Megan’s joke about the bowels, I have a bit of concern for the future of his colon. But, just in case you’re wondering, it’s working really well right now, and he has some fantastic pressure in both ends of his plumbing!

There was a time when I couldn’t lay on my left side because it aggravated my Colitis too much. 4, count them, FOUR years of my life I couldn’t sleep on my left side. Take that, Colitis! Here I am asleep with the little guy. Sleeping with him (on my left side!) is my new favorite activity.

I promise a full story of my Colitis, waiting too long to get it treated, surgery, and recovery. For now, though, please join me in welcoming our baby to the world.

You see, it gets better, I promise.

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]]> http://www.jpouch.net/2010/03/27/colston-thomas-mills/feed/ 4 Commenter with Questions http://www.jpouch.net/2010/02/25/commenter-with-questions/ http://www.jpouch.net/2010/02/25/commenter-with-questions/#comments Thu, 25 Feb 2010 19:28:54 +0000 Megan http://www.jpouch.net/?p=2384 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

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]]> http://www.jpouch.net/2010/02/25/commenter-with-questions/feed/ 13 Blood, Poop, and Tears http://www.jpouch.net/2010/02/19/blood-poop-and-tears/ http://www.jpouch.net/2010/02/19/blood-poop-and-tears/#comments Sat, 20 Feb 2010 00:40:51 +0000 Eric http://www.jpouch.net/?p=2379 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.

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]]> http://www.jpouch.net/2010/02/19/blood-poop-and-tears/feed/ 3 I’m so over this colon. http://www.jpouch.net/2010/02/15/over-this-colon/ http://www.jpouch.net/2010/02/15/over-this-colon/#comments Mon, 15 Feb 2010 20:42:51 +0000 Jackie Z. http://www.jpouch.net/?p=2370

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/

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]]> http://www.jpouch.net/2010/02/15/over-this-colon/feed/ 13 A little insight on my insides. http://www.jpouch.net/2010/02/08/2335/ http://www.jpouch.net/2010/02/08/2335/#comments Mon, 08 Feb 2010 17:42:29 +0000 Jackie Z. http://www.jpouch.net/?p=2335 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.

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]]> http://www.jpouch.net/2010/02/08/2335/feed/ 13 New website for gay people who are affected! http://www.jpouch.net/2009/12/20/new-website-for-gay-people-who-are-affected/ http://www.jpouch.net/2009/12/20/new-website-for-gay-people-who-are-affected/#comments Sun, 20 Dec 2009 21:22:08 +0000 booties4986 http://www.jpouch.net/?p=2284 Hey guys-

gay-6216I just created a blog to be a resource for members of the GLBT community to visit and get some answers on questions that you have been searching endlessly for. I know it’s a very taboo topic, but as a gay man, I would have loved having a place where I can go and ask any questions I want without feeling embarrassed. I have posted on jpouch.net before and got a lot of responses from people thanking me for putting information about being gay and facing the surgery. I have done a lot of research onto the topic and hope to provide some answers and/or comfort to those of you suffering.

http://gaydigest.wordpress.com/

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]]> http://www.jpouch.net/2009/12/20/new-website-for-gay-people-who-are-affected/feed/ 5 Welcome Lisa to the “No Colon Club” http://www.jpouch.net/2009/12/13/welcome-lisa-to-the-no-colon-club/ http://www.jpouch.net/2009/12/13/welcome-lisa-to-the-no-colon-club/#comments Mon, 14 Dec 2009 03:59:48 +0000 Mark http://www.jpouch.net/?p=2275 Hi!

We’d love to have jpouch.net give Lisa some great support and go visit her blog and UC to Jpouch Story Lisa’s UC to Jpouch Story .  She has just had Step 1 surgery and on the mend. She is new to the community and as we all know could use some jpouch support.  Meet Lisa in some of the below photos before surgery – we hope to see her in back to happy photos soon after this recovery! Lisa’s UC to Jpouch Story

Lisa1 Lisa3

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]]> http://www.jpouch.net/2009/12/13/welcome-lisa-to-the-no-colon-club/feed/ 1