J-pouch Life

It’s been exactly a month since the divorce. To clarify: Divorcing from my colon. My colon doesn’t phone, it doesn’t even write letters to me. I guess it’s over. The break-up was pretty bad I suppose, considering they had to sedate me for all the pain. So here we are a month later and I barely miss that drama queen of a diva. I have a few questions scattered through out the update, and I would appreciate any input : )

The Scars:

I’m amazed by how well the laproscopic scars healed up. They look like tiny papercuts. Well, except for one. The largest of the lapro scars (on the left, below the previously existing scar) is still healing and has a long way to go. It might get infected, so to avoid this I have the band-aid on. This particular scar is a jerk when you compare it to the other ones. The large, main scar above the pubic bone is healing up nicely. The small purple spot is where the JP Drain was. Not too shabby, considering they shoved a tube in there. All in all, I welcome the 6 new scars (it will be 7 once the takedown surgery patches up the stoma). I’m still bloated and lost some definition, but I think it’s hilarious that the LoveNox injections I give myself in the love handles (for a tiny blood clot incident) are leaving more marks than a massive surgery. Yay, fear of needles!

1) Lapro: super tiny and disappearing; 2 and 3) Lapro: almost gone; 4) JP-Drain; 5) The Big One; 6) Oh look an intestine sticking out; 7) Lapro: Band-Aid protecting scar

The Stoma:

Do you feel left out for not having an ileostomy? Do you get made fun of for not having a stoma? Well I’m here to help! Simply glue a red Dots candy to your stomach! It’s pretty much the same. Expect my Dots candy likes to poo when startled. And to poo just for fun.

The medical community is telling me that my stoma is fairly tiny. I guess there are varying sizes? It’s between 7/8″ and 1″. The stoma’s opening itself is close to the surface of the skin, so this causes skin irritation close to that area. I haven’t named my stoma yet, although the name Stomie “Squirt” Stoma, P.I. is winning so far. I’m open for suggestions! I do have a character profile in place. Stomie “Squirt” Stoma, P.I. solves mysteries each week with it’s crazy detective and observational skills. Sort of like Murder, She Wrote but with more.. poo. Last week we solved the mystery of the missing Pringles! It turns out I ate all of them.

Left: Eww gross yuck ewww; Right: Yay!

The Ileostomy Bag And J-Pouch:
One month, zero leaks. Yes, I realize the leaks are inevitable and I came close to getting leaks. But I have had no emergency patch jobs yet. To make up for this, my body (who is holding a grudge against me for not enjoying cheese cake during my hospital stay) is sometimes leaking through the bum when I sleep. Apparently when you sleep, your muscles are relaxed and you can have discharge through the J-Pouch. It’s not regular clock-work leakage, and it’s not exactly gallons of fluid, but I play it safe and have a pad thingy available when I go snore away. How common is this for folk with the j-pouch? Will the leakage stop once my bum clenching muscles wake up?

The Home Nurses and Costco:
For some magical reason, my insurance covered all of the surgery and hospital bills but won’t cover the actual ileostomy bag supplies. I’ll have to pay out of pocket for these goodies, but until then am blessed with Home Nurses and what I can only describe as the equivalent of Costco’s sample stations, but it’s Ileostomy Bag samples. They bring in all of these samples for me to try. I’m still finding out what works best for me (a convex two piece velcro baggy seems ok so far), and I’m enjoying the free samples while I can. When I’m going to buy the supplies, I’l be dang sure it’s the kind of supplies I like. I have a belt strap thing that helps keep the bag hugged to the body, but are there any other crazy goodies I should know of? Any hot tips? These bags don’t seem to hold their shape, so I’m always cautious about half holding the bag when I walk around. And for those with ileo bag experience, how did you uh… exactly empty it? If you’re too high up from the toilet bowl, it will splash toilet bowl water everywhere. In order to get close to the bowl, you have to kneel or aim veeerryyyy carefully. What gives?

Left: Newly changed bag with the awesome strap/belt thing; Right: My interpretation of 30 minutes later

Diet
Oh Bratwurst. I miss you. And any sausage with casing, for that matter, which just happens to be my favorite food. But nay, I shall not become depressed! Instead, I’ll drown my sorrow in meatloaf. I’m still having inconsistencies with my poo. Sometimes it’s thick-ish, sometimes it’s pretty liquidy. I’m still finding that balance as to what works, but out of curiosity, what fiber supplement works best? BeneFiber? MetaMucil? Colon-Blow?

The healing process is an amazing thing. I can’t wait to see what my progress is a month from now.

It’s been quite a while since I’ve posted, but it was for good reason. First, the reason was that I got back into my regular life after my second surgery and stopped thinking about UC all the time (I planned to put the third step off until the fall, as a way to manage my work and school commitments). All was well, until I got two partial blockages that sent me into the hospital about 3.5 months after surgery 2. So then the reason became that I’m in the hospital. And I write that in the present tense purposely – I have been here for almost a month and am writing this from my hospital bed (at least I have internet access in the hospital now, a new development – hurray!). The blockages seem to have cleared up but I am still losing way too much fluid, so I cannot leave until we get the massive quantity of fluid I am emitting under control. I am incredibly frustrated as this is an enormous amount of time to be in the hospital and I am really feeling frustrated with missing my life and the little good weather my city has to offer (I was in the hospital this time last year, too, and basically missed the whole summer being sick. When you are in Canada, summer is precious and I’m a warm weather woman!).

Yesterday was the Crohn’s and Colitis Foundation’s Heel-n-Wheel-a-thon (the Canadian national organization) and my original goal a few months ago was to run it. I recruited a number of friends and colleagues to participate with me and I was quite excited about the event. After being hospitalized, my goal was to be out in time to watch. Eventually, the goal was downgraded to getting an approved temporary absence from the hospital so I could attend and, happily, I got one! The event itself was really fun, with free food and lots of activities for children (two of my nephews attended and had a blast). My colleagues went ahead and made “Jenelle’s Power Pack” t-shirts (they said “Run, Colon, Run on the front) and raised almost $2,300 which was really great. Even my boss came out and walked the race with his wife. I felt very touched and supported by the whole event, and that at least something positive was coming out of my being sick again. Next year, my goal is to run it!

After receiving an interesting letter from my new GI yesterday, I’ve found myself in a rather contemplative mood.  I was diagnosed with unquestionable serious UC when I was 16.  The GI who diagnosed me recommended immediate surgery to remove the colon.  I declined, preferring instead to take meds for years and try my hand at that.  They sort of worked for a while, but a time came when surgery was the only option, so I had a successful 3 step laproscopic surgery.  Many tests were performed before the surgeries to be sure I indeed had UC and not CD.  All supported the UC theory.  Post surgery, I had problems with stricture and “pouchitis.”  However, the pouchitis was above the pouch and unresponsive to antibiotics, so I ended up with a diagnosis of Crohn’s.  This rocked my world, and not in a good way.  Philosophically, I finally came to realize that it didn’t really matter what they called it, it just mattered that my symptoms could be treated enough to allow me a “normal” life.  So, this letter yesterday sort of pissed me off because it said, essentially, that the blood work he performed said that it looked like I had UC.  I thought we’d already been though all this about a billion times…

“The blood markers were more leaning towards the diagnosis of ulcerative colitis rather than Crohn’s disease. How do I interpret these results in light of your history? I am not sure, but these blood markers were chosen by likelihood of association. The way I look at it, if you are responding to current therapy, then we will continue it.”

My favorite part is, “How do I interpret these results in light of your history?” ie:  Um…you don’t have a f&cking colon, how can you have UC?

So much of these diseases are based on location.  Gastrointestinal real estate. Location! Location! Location!!!

So, the more I experience “Life w/ IBD” the more I realize that the experts in the field really know very little about distinguishing these diseases.  I don’t think this means that our doctors are utter morons, I think it means that this disease, UC, Crohn’s, whatever…Let’s just call it IBD, are seriously complex and confusing. Even though the tests they rely on for diagnosis are advanced and very specific, they are still  not perfect.  I mean, how can I have ulcerative COLitis without a COLON?  For all of my years researching and living with this, it was like the ABC’s of IBD to know that UC only lived in your colon.  I’m pretty sure mine is disintegrating in a jar somewhere…

But, does it really matter what I call it?  There are some in the medical community who believe that chronic pouchitis may be a new form of IBD.  Maybe I have that…Maybe it really is Crohn’s, maybe it doesn’t matter???

It just comes down to the power you give a name.  Does it really matter if what I have is Crohn’s or a new manifestation of UC, or chronic pouchitis?  It shows how much we begin to identify with “what we have.”  I really don’t want this disease, whatever it is, to become a part of my personality or my identity, and I know that to some extent, it has.  Hearing that I had Crohn’s was somewhat liberating because it was what I’d always feared the most.  Realizing that it didn’t much matter what you called it as long as it was treatable, was liberating.

This new information is confusing, but also puts it in perspective for me.  I know, without a doubt, that I have an auto-immune disease that attacks my intestines and causes some other manifestations (sinus, arthritis, etc.)  I guess there is some comfort in naming it, but all that does is give it power.

I now realize why my new GI never previously differentiated between CD and UC; he just always calls it IBD.   I may never know what “I have” but I know something now…I’m not going to make this who I am.

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

One of our fellow new jpouchers (1 week old jpouch) is having some issue adjusting to his new jpouch, some of it sounds physical and other of it sounds mental/emotional. I know when I had my takedown I experienced that as well, but I was hoping you could read through his most post on his blog and maybe start a discussion regarding your “reverting back to UC feelings after takedown” experience.  I think Chaz could really use the feedback and discussion on this issue. See Chaz’s blog here: http://mylifewithcrohns.wordpress.com/

Your comments, questions, concerns, jokes, and advice are the bread and butter of Jpouch.net. With that in mind, we’ve added some cool new features that we think you’ll like.

Threaded comments. You can now reply to a specific comment on a post or on the bulletin board by clicking the reply link below that comment. This way, comments can get grouped together to form a more cohesive conversation.

Subscribe to comments. You can also check the “subscribe” box near the post button to be notified of any new comments on any post via email. So, if you leave a comment on Megan’s post about being “that sick couple” and then Mark comments on it, you’ll get a nice little email and won’t have to check the same post every day waiting for a reply! More time to read the new stuff!

And, as a thank you to everyone who comments, just on the first comment you’ll get a nice little thank you note for speaking up and telling us what you think.

Have some more features you’d like to see? or if you’re just curious to try the new functionality, as always, your voice is welcome in the comments below.

I thought I’d try something new and give you guys an update and link to other jpouch related blogs/sites.  See below and let me know if you like this feature by leaving me a comment, if you do, I’ll keep doing it. If you don’t, I’ll stop!

Chaz just had his takedown and documented it here:   My life with Crohns

Paul talking with surgeon about possible surgery:  Living with UC

Abby is feeling better after complications:  Whole Heart and Soul

Ostomy lifestyle fashion show:  UCVlog

Balancing the Risk and Benefits of Treatment for IBD:   CCFA

Funny video. Sarah Haskin’s Target Women “Yogurt” for BMs:  Yogurt Spoof

I can now make fun of people with colons. Surgery went down on May 11th, and I am now back home to finish recovery. Here is a quick summary for those interested:

Day 1:
Progress: Felt excited going in to surgery, mostly because I couldn’t wait to get rid of UC after all this time. I remember a bit of the prep, but not much afterwards. I do remember hearing my manager’s distinct laugh at some point, and it was later confirmed that he visited while I was in recovery. How weird is that? Lameness: I was in the recovery room for 3 to 4 hours, instead of 90 minutes. I apparently didn’t respond well to the pain, but I don’t recall. The doc also later said that my entire large intestine was in pretty horrible shape. Fun Fact: They have this inflatable blanket filled with hot air called the Bair Hugger. It heats you up fast, and so help me I want one for home usage. Hot Tip: If you have arm hair, shave it off before hand. One of the most painful things during my entire hospital stay was tape removal from body hair. So many, many tears. They shaved part of my left hand during the beginning, but ended up using my right hand for the IV. Dangit.

Left to Right: Excited to get in for surgery; A Kodak Moment censored; The Awesome Bair Hugger

Day 2:
Progress: Upgraded to ice chips. I love you, ice chips; you really helped out. Had a short painful walk to across the hallway. I really don’t remember much else, except I briefly made it to a chair. Lameness: Beats me, I can’t remember. Probably a lot of pain. Fun Fact: I don’t see how I can ever do bowel prep again. Bwahaha!

Left to Right: Testing my lung activity; Somehow made it to a chair; My first walk

Left to Right: Ileostomy bag and JP-Drain; Close up of JP-Drain that accumulates excess fluids

Day 3:
Progress: Walked a bit more, felt more aware of where I am and what’s going on. First popsicle! Lameness: I had bad nausea that night and couldn’t sleep. I also dropped the nurse-call button and was stuck without help until they did the rounds. They didn’t want me to drink any water when nauseous, so I was thirsty as well. Didn’t sleep much. This is exactly why you don’t stay up to watch the Lost Season Finale in a hospital. Hot Tip: Tie that dang nurse-call button to your bed so you don’t drop the entire thing to the floor. Fun Fact: The patient is at an angle during the surgery, with the head a bit down. They pump you full of air to maneuver a bit better through the organs, which explains the gas pains and bloating afterwards.

Day 4:

Progress: Now on Pureed food! So long, horrible broths. First complete Ileo bag change! Hot Tip: I can’t stress this enough. The nurses can’t stress this enough. The people on this site who had the surgery can’t stress it enough. Walking is your friend. Do it, and do it often. If you can’t walk, the movement from lying to sitting to standing is a huge, huge win. Bonus Hot Tip: Heparin shots (used to prevent blood clots) feel like wasp stings after the wasps were dipped in poisonous lava. I recommend you take them in the shoulder (you have a choice to where they go, so don’t go for the stomach!).

Left to Right: First Ileo bag change; Stoma still to be named; Attempt to escape from the hospital

Day 5:
Progress: By complete surprise, the nurse removed my catheter. I was caught off guard (press the pain button! press the pain button!) and holy cow. It didn’t hurt, but it was rather uncomfortable for that quick pull. Super Ultra Lameness: Saturday was a low point. I was starving and wanted to learn more about my ileo bag, but my assistant nurse was a “floater” from a different hospital just helping out. She didn’t know what the bag was called and hasn’t emptied one in 10 years she said. I was horrified. I needed reassurance from the nurse, not questions. The UCSF nurse group is awesome, so I hope you understand my disappointment with that one loose-cannon nurse. To top it off, my lunch was a little thing of mushroom soup. Mushroom soup? It’s on my Avoid Post-Surgery list of foods. What gives? I was pretty unhappy. I’m glad my mum was there to lift my spirits. Fun Fact: I can’t be disemboweled at this point, or, at the very least, the serial killer who tries to disembowel me will be very disappointed with the results. In your face, serial killers!

Left to Right: Blood clot from JP-Drain (creepy); Stoma swelling is down; Very happy to upgrade in food

Day 6:
Progress: My first full shower! They had to cover the hand with the IV-tubes in a glove, but I had horrible horrible freedom for 20 minutes (no attachments to the IV stand!). Haven’t pressed the pain button in a while. Cleaned my own bag! Finally got a menu! Got solid food! Lameness: Getting up at 4 a.m. to pee. This is a funny complaint, considering that with UC you had to get up every 2 hours in an emergency rush. It’s just weird to get up for a normal reason now : ). Fun Fact: According to the Discovery Channel (which I watched, a lot), horse meat is less fatty than beef. Just so you know. Hot Tip: The food at UCSF Mount Zion is actually delivered from the main hospital on Parnassus. This explains why the menu choices doesn’t exactly fit your dietary restrictions and they can’t pull last-minute favors. This also explained the mushroom soup incident.

Day 7:
Progress: Discharged! Lameness: Didn’t fall asleep until 2a.m. that morning. Walked 6 laps to get tired. Just as I started dreaming about resetting Terminators in each movie and how it would affect the box office for each (yeah, seriously), a nurse woke me up at 4 in the morning to weigh me. Really?! My weight couldn’t wait? The doctors then made rounds at 6, so I didn’t sleep well. Super Lameness: Whoever said laughter is the best medicine is a filthy liar. Laughing post surgery is incredibly painful. A few minutes before discharge, my spirits were up and there was silly talk involving a 90 year old magician, gypsy singers and the movie “Outbreak”. I ended up laughing, which caused so much pain I was on vicodin. Hot Tip: Don’t watch funny shows for a while. It really hurts. This is also a great indicator to tell you what you find really funny (based on my pain level, American Dad turned out to be funnier than Family Guy). Fun Fact: Try blowing your nose after surgery. It’s hard to do.

Day 8:
Progress: I slept in! Home nurse visited, she patched up my JP-Drain tube with a nice water-proof setup. Felt productive. She’ll bring in ileostomy bag samples on next visit (hello, velcro!). Lameness: Home nurse’s paperwork took forever. Thankfully that’s done. Fun Fact: For those with ileostomy bags: iron supplements will turn the stool black, but this is normal. Don’t freak out. Hot Tip: We should convince the ShamWow! guys to make medical supplies!

10 pounds lighter, tagging an Ileo bag and JP-Drain, and wondering how the body reacts to 5 feet of missing organ.

What’s Next:
I have to work on my posture. I can’t straighten all the way out, since my mid-section is still too sore and tight. I also soiled my pants on my first night home. The leakage through the bum is “normal” discharge, but I was caught a little off guard. I have a follow-up next week, and hopefully they will remove the JP-Drain by then (I have to have less than 80CCs of drained liquid, I’m currently at 200 or so, which is still better than the thousands of CCs I had immediately post-surgery). Let’s heal this up already.

Zzz…

Saguaro National Park in Tucson Arizona. A truly magical place! Image by Leto A.

Hello everyone! I am a firm believer in grassroots movements. As such, I am feeling a strong desire to put together a conference for J-pouchers. I live in Tucson, AZ and believe we have some great resources for J-Pouchers with the University of Arizona here. Anyway, what I am asking for is some honest feedback and input from as many people as possible about holding such a conference. I have a personal website: www.MusingsAndNotions.com where I have a page dedicated to obtaining information from J-Pouchers and Ostomates on the possibility of such a conference. If you would please take a moment to look at the page and give me your feedback and comments, it would be greatly appreciated.
Abby Cashman