J-pouch Life

Yup, its true, my “foster” bag wants a permanent home, it wants to be adopted. It seems like its doing everything it can to make a lovely home on my belly.
Heres the scoop. The last time I blogged I was getting ready to have the first leak fixed back in February. I went into surgery and my surgeon attempted to fix the leak. I came out and was told we needed to wait 3 months before I could try again.
So I went home and started the wait. Three months later I returned to Duke to have the o so wonderful pouch-o-gram done for the second time only to be told that there is still a leak.  On June 8 my surgeon and another surgeon from her team took another adventure into my but. They stitched, double stitched, stitched again and then glued the dang thing. We were all hopeful that it would hold and let the leak heal.
Well as you can guess again it didn’t. On Friday the 27th I returned to Duke again and had my favorite test done for the third time. At this point I could tell them how to run the test. You know its bad when these people that work at this huge hospital start knowing who you are. So yes the test concluded that the leak was still there and, oh you’ll never guess, unchanged.

I went to talk to my surgeon about what step we would be taking next. She told me that she has done everything she can do from going in through my bum. That shes not sure why its not healing and that there really arn’t to many options left. So the 2 options that I have are one put in a drain or wait.

Soooo where does that leave me…..sitting on the couch with a red plastic tube sticking out of my but…..OH WHAT A FUN FREAKING TIME! Oh no to mention still waiting, probably as long as another year, again a great time.  About every 4 weeks or so I’ll head back up to Duke to have the tube moved a bit as long as it doesn’t fall out first.  Or should I say until I can’t stand it and take it out. The thing is stitched to my skin and the tube is about a foot long. Yeah it pulls on the stitches, and I have to flush out the tube every day, it just keeps getting better and better.

I really feel like there just isn’t enough research being done to help people like us. There has got to be some better options for us. Yeah I know its not one of those serious illnesses you see on the news all the time but this is serious to us. I feel like we’re the little people in the medical world. Well we need attention to. We need help to. There needs to be more freaking help…..Where are you big wig medical people at?

As you can most likely tell I’m angry, frustrated and down right pissed off. I’m not giving up hope and I will continue to fight to get that part of my life back. And eventually the angry will subside and I’ll find a way to accept this situation and deal. Until then, I’m alright with being mad. I think that sometimes its good to be mad. We are all getting dealt “shitty” cards and none of us asked for any of this. I’m not signing any adoption paperwork and sooner or later I will kick him out on his poop bag ass!!!!

I am thankful for my boyfriend and my family, I really couldn’t get through this all without him or them! Mike is by far the best man in the whole world!!!!!

Stay strong and this to shall pass!!!

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…

Some humor for all of you today. If you can’t laugh because it hurts too much from surgery or a flare – I’ve been there. If you can laugh, good for you! It takes a long time to “get over” the psychological ramifications of having one of the basic human functions completely effed with.

Here you go: Irritable Vowels from the guys behind The Morning News. I love it and I want one. Perhaps jpouch.net should have a contest and give one away? Chime in with your ideas for a contest in the comments.

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Hi all! So for those of you who have followed my story for the past few months you know there have been many ups and downs.  New theories emerged, the one most perplexing and possibly exciting one being that perhaps I didn’t actually have Crohn’s disease-maybe just a horrible case of pouchitis due to poor pouch function.  Several tests later, and another Prometheus test result just confirmed Crohn’s.  I heard this back in 2006 for the first time, after several post-surgical complications and made my peace with it.  So, to be told that I “might” not have it was sort of annoying, sort of exciting, but I guess in reality, I knew that my luck was just not that good!  So back to Crohn’s disease and back to my perspective that it really doesn’t matter what I have as long as it can be treated.  Treatment, however, brings a whole new scope of problems.  Turns out now that since this is (once again) permanent, and not yet curable, that I have some decisions to make.  I am on tons of meds-weekly Humira shots being one of them, and lots of antibiotics.  I take Xifaxan and am currently taking Augmentin for a sinus infection.  Gosh, it makes me feel SO much better.  Unfortunately, I can’t pump myself THIS full of antibiotics on a regular occasion, so I have some thinking to do…I’ve been going to physical therapy to try to get my pelvic floor muscles to relax so I can poo properly.  If this doesn’t work and things don’t improve (I’ve had mild to moderate inflammation despite being on all these drugs), it’s time to say ta ta to the pouch and HELLOOOO to an ileostomy again.  Don’t mind to go this route if it would help, but my surgeon suggested basically amputating the pouch to do an end ileo and I’m not thrilled at the prospect of losing what little guts I have left.  As you also are possibly aware, I was fired from my job because I was absent a lot at the first of the year due to my ongoing health issues.  Thankfully, I am getting unemployment benefits right now and have my health coverage through COBRA, but neither of those will last forever, so I need a plan.  My mom keeps suggesting disability.  Part of me agrees with her-most of the time I am too tired to do much of anything, but then I think, “but maybe I can get a work from home job!”  I’ve been applying for stuff, but I really need something flexible, and not many of those exist in this economy. Le sigh. What to do?  I don’t want to feel like I am “giving up” on a “normal” life, and it’s just not my style to not work for my earnings, but I guess I need to be realistic.  I just feel defeated when I consider that option. Should I  just bite the bullet and apply for disability?  Most importantly, I have to have health insurance and I don’t think I can find a full-time job that will provide that and allow me the sick leave which I will likely need.What would you do?

You know, I’ve heard this again and again and again. I’ve heard about refined sugar and the like. In fact, I’ve read about this notion so often that I might be starting to believe it. What do you guys think?

From Science Now:

All those Lucky Charms and Big Macs that people in the developed world scarf down could explain why they are more susceptible to allergies, autoimmune disorders, and inflammatory bowel disease than residents of agrarian societies. New research suggests that people living in rural Africa have a healthier mix of microbes in their guts than do their Western counterparts, which may protect them from the intestinal diseases that are common in modern developed countries.

Hey everyone, Last week I got back from Camp Oasis, which is the amazing camp for 7-17 yr olds with IBD. I posted a blog entry about it here. I honestly urge you all to find the closest Camp Oasis location to you, and volunteer next summer. This camp is a really amazing place for kids, and for us…not to mention its FREE for all the kids. The kids and counselors all have IBD, and there Is a full time medical staff. Read more about it here CCFA: Camp Oasis.

Hello,

We are thrilled to announce the birth of our little girl, Laney Lee-Hilton. She was born on June 12, 2010 at 4lb 9oz. Although small she was full term and perfectly healthy with a good working digestive system!  Almost 3 years out from my jpouch surgery it is so exciting to see our life today.  It is hard to believe that 3 years ago I was dominated by UC with now ability to see life outside the dominating haze of UC. And now, I’m healthy with my jpouch, enjoying my life and celebrating the birth of our first baby.   To everyone who is looking at surgery or feeling like disease is dominating their life, just keep fighting to regain your health so that you can lead the life you deserve free of disease.

Here are some photos of our sweet girl:

Hi ya’ll. So, if you’ve been keeping up with the blogs over the past few months, you know I’ve had test after test to see what’s wrong with my pouch/me. Throughout the years I’ve had strictures, twisted J-pouch, Crohn’s, pouchitis. Now my new surgeon wonders if I even have Crohn’s. Maybe it’s just the worst case he’s ever seen of chronic pouchitis because my J-pouch doesn’t empty properly. Le sigh. Soooo. Never thought I would consider/long for an ileostomy-in fact, I thought I would do everything I could to avoid it and suffer to keep my j-pouch. Well, I’m tired of suffering. My surgeon is going to try to remove part of my rectal cuff to see if that helps things (although he can’t say one way or the other if it will improve things) and allow me to empty properly. Basically, he thinks I should try this before saying “ta ta” to the J-pouch. Sort of the last-ditch J-pouch effort. I really am so sick of surgery and my life revolving around them and being sick. Maybe this will help. Maybe it won’t and I’ll have more surgery. Maybe they will decide I had Crohn’s all along when I have the ileostomy again. I dunno. Do I keep trying or do I just leave well-enough alone?

Well, my J-pouch and I are now married to a wonderful, fully-coloned man named Rob.   We both have a new last name.  Not sure if the pouch is going to hyphenate or not…

Our knight in shining armor is Rob, who has stuck by us through blockages, twisting guts, and many surgeries. What a guy! Even through all this, he decided he wanted to be with us forever.  Needless to say, I am a blessed lady with a J-pouch.

My life has been far from perfect health-wise, but family-wise, in-law wise, friend wise, I could not be better off.  We had a wonderful weekend with family and friends,  a sunny Portland wedding day, great food, and other than a little arthritis, no IBD problems!

Now, back to the real, non-wedding world, I’m again spending my days on the phone with my insurance company arguing with them about a $500 charge for an x-ray and playing phone tag with my surgeon who just gave me the results of the pouch-o-gram test I had about a month ago.  Basically, it empties slowly and the lining prolapses.  Also, it’s too damn big.  No real surprises there.  He wants to do a pouch exam “under anesthesia” which will be, I believe, the billionth pouch-related medical test I’ve had in the past six months.  I am ready to move on with my life and make some progress.  I remember when I used to be an ambitious young thing.  These days being sick is a full-time gig and if I haven’t lost my ambition completely, I’m fully distracted from it.  I need to come up with a good plan that will allow me to flex my mental muscles and allow me down-time when I need it.  Anyone know of a career like that? Sigh…me neither.  Maybe I can be the first “Real Housewife of J-pouch County.”