4 feet less but still the best: My Jpouch Story

by on Monday, April 6, 2009 17:50

File this entry under: Photos
Ginger, my favorite resident at UCSF, checking on my NG tube. This tube isn't fun but will make you feel a lot better if you have an ileus.

Ginger, my favorite resident at UCSF, checking on my NG tube. This tube isn't fun but will make you feel a lot better if you have an ileus.

First, I would like to give props to my fabulous husband for coming up with the name of my jpouch story. It isn’t quite as cool as ‘No colon and still rollin’ but still kind of catchy! This is just one more thing my supportive partner does to rock my colon-less world!

My initial journey with “Colin the Colon” began in late 2005 when I relocated to the west coast and a new doctor diagnosed me as having a gluten allergy after I complained of frequent digestive problems and extreme fatigue. For the next two years I changed my diet drastically but saw minimal to no improvement in my digestion and became more and more fatigued. Fast forward to fall 2007 when I could no longer dismiss my GI symptoms and fatigue as food allergies as I started to bleed with each bowel movement, experienced constant diarrhea, lost weight rapidly, and had trouble with nausea and vomiting. I finally got a referral to a GI specialist who put me inpatient at a local Oakland hospital while I waited for a colonoscopy. The pathology came back as moderate pan colitis. I hadn’t really done much research on the disease as we were early in the diagnostic process; however, I was told that with medication and dietary modifications, I would be fine and live a normal life. Perfect – I could pop a few pills a day and all these terrible symptoms would go away. If only that were the case.

Read the rest of this entry »

My Tongue VS Surgery: Round One

by on Wednesday, April 1, 2009 20:21

File this entry under: Support Systems

Time flies. Back on February 6th, I posted on this site about how long the wait was to see the GI at UCSF, and then, in a desperate attempt at optimism, threw out some possible perks to having UC. In your face, optimism! Turns out all I needed was a billion distractions and BAM! I saw the GI at UCSF last week and she referred me to Surgery. My Pre-Op consultation is this Friday the 3rd! I’ll hopefully have a huge update then.
In some sick, medical twist on Hansel and Gretel, the GI at UCSF is starting to fatten me up. I’m gunning for a 2,500 to 3,000 calorie diet, with an emphasis on carbs and protein. This sort of works in my favor, since I’m secretly training for the World’s Strongest Man competition anyway and am planning on lifting a small European car (with all Options included) to impress my boss. Not really, but I tell myself that as I’m taking protein supplements to help with my diet.

My biggest concern right now is my mouth. I’ve been going to the UCSF Oral Medicine department to have it checked out, and the most common thing I hear is “we’ve never seen this”. While I doubt I’m some medical anomaly, I want to check in with the UC and J-Pouch community to see if anybody has experienced or heard about this: Read the rest of this entry »

Gas after 1 step surgery

by on Tuesday, March 31, 2009 13:01

File this entry under: Coping/Support
Men's bathroom sign at playground in Bangkok, Thailand by EyalNow

Men's bathroom sign at playground in Bangkok, Thailand by EyalNow

We’ve recently had Christine and Ricardo post some comments. Ricardo on March 17 had 1-step surgery due to FAP. So he bypassed having the stoma and went straight to using the jpouch. He is having some gas and pain.

Has anyone had the 1 step and experienced this type of pain and gas about 2 weeks after surgery. And does anyone (1, 2 or 3 steppers) have any advice for Ricardo on what the gas and pain might be related to?

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Greetings from the West Coast.

by on Wednesday, March 25, 2009 17:13

File this entry under: Coping/Support

rosesSo it’s been a while since I’ve gotten my blog on. As most of you know, I was once a semi-obsessive poster, so least you fear I’d fallen off the face of the earth, I’ve reappeared to tell you that, no, I haven’t, I’ve just moved.  Cross country in fact, to Oregon. It’s really beautiful out here, (in Portland, to be precise).  My fiance got a job here last fall.  I’d visited five or six times, and on March 7 made the move.  My mini wiener dog, Ellie, accompanied me on the wild, wild West trip. She was wonderful, but the trip was hellacious. Suffice it to say that I arrived a day late, totally exhausted both mentally and physically, fed up, with broken spirits and suitcases, but otherwise wholly here! The first two days were rough for me. It was a more stressful physical trip than I’d anticipated. (This, I blame solely on Delta.) I’ve been here just over two weeks, and have since had a great time getting the new place set-up, exploring, and enjoying being in the same city with my man again. I did all the necessary doc stuff; got set up with a new GI here, who I will see in early April.

Now comes the really fun part…Rob and I both got a horrible stomach virus (the hearty west coast kind) over the past weekend, and it nearly demolished me. No colon and still rollin’, yes I am, but no colon+Crohn’s+Exorcist style puking and shatting for 3 days left me with little “roll” left.  Rob took me to the ER last night and I was promptly met with IV fluids and anti-nausea meds. I finally started feeling and looking more like myself again after two bags of fluids, but I made a total rookie mistake in waiting way too long to go to the ER. I remember when I first had this surgery, my wonderful surgeon told me explicitly, “If you ever get sick with vomiting and diarrhea, you must go to the ER ASAP to get IV fluids.” I pushed this to the back of my brain, thinking as I was gasping for breath and grasping at straws, “I can do this, I’m still drinking plenty.” But I couldn’t keep anything “in” for very long. When the vomiting eventually stopped, the literal watery diarrhea did not. Every time I stood up and took a step or two the room began to spin and my heart thumped so loud and hard in my chest I knew I had to stop being so damn stubborn and get my butt to the ER, as my ever wise Dr. Wise told me so long ago.

So, kids, no colon? Puking? Shitting your brains out? Don’t be a fool. Get your butt to the ER ASAP and get some fluids flowing through those veins. You’ll be glad you did.

I feel much better today, however still like I’m a little slow or off just a tad. It kind of feels like every thing is going in slow motion or maybe I’m just dazed and confused?

So send good vibes westward and heed my advice.  We are all too familiar with the suck factor of the  ER, but sometimes, it’s where you really need to be.

Welcome aboard Jamie!

by on Saturday, March 21, 2009 10:18

File this entry under: Coping/Support

Home sweet home. I missed my labradoodle so much! It feels amazing to be home! Here is to life with no colon!We want to introduce Jamie to everyone. She is going to be sharing her story and journey back to health on this site, as well as on her personal blog.  We are working on getting her set up as a blogger, but in the meantime, she sent us the most incredibly warm and positive email that I wanted to share with you. Now, we are sharing this not because she just said kind things about the site :), but because she embraces the voice we so encourage that to heal well even in all the complications and struggles remaining positive is CRUCIAL!   We are so excited she is joining us, and hope you give her a warm welcome.

Also, i was so glad to read on your website that you guys are enjoying life so much Athens! I completely understand about being the sick couple – my husband and i totally fall under that label. I can’t even begin  to tell you the number of times we have had to cancel plans due to my health. It will be so refreshing when all this is behind us as we can once again enjoy being just another young couple. …Your site is so amazing – throughout my illness and my decision to have surgery I always found refuge in your site as Mark and the rest of the stories always had a positive spin even if people had complications. A positive attitude is the one thing that can make all the challenges of this disease and surgery manageable.Thanks for starting such a great site!  Take care, Jamie

Jamie is updating her journey at http://jamieucstory.wordpress.com/

Camera: From the Colon to Eye Socket

by on Thursday, March 12, 2009 12:49

File this entry under: technology

bionic-eye-r-manThis is cool: Rob Spence, a film maker who damaged one eye as a child, will install a camera into the socket where his eye used to be.

A fan of the 1970s television series “The Six Million Dollar Man,” Spence said he had an epiphany when looking at his cell phone camera and realizing something that small could fit into his empty eye socket…

The camera he’ll install was originally designed for colonoscopies.


Horseback riding and a J-pouch

by on Thursday, March 12, 2009 8:14

File this entry under: open thread

photo by kimncris

A fellow J-Poucher (Jeffrey in LA) wrote us a personal email and asked us the following question.  Since we didn’t have an answer for him, we thought we post the question here and see if anyone has any thoughts:

Jeffrey asked:

A friend invited me to go horseback riding but I’m worried it make me have to empty the pouch.  You know, the rocking motion, the occasional smack of the saddle catching you in the butt.  Just wanted to know if any one on your site with a pouch has gone back to riding.

Well, anyone have any thoughts?  I think we can answer this with any activity that might have a rocking motion like riding a motorcycle or training for NASA space flight mission.

March is Colon Cancer Awareness Month

by on Wednesday, March 11, 2009 11:28

File this entry under: cancer
Blue Star is the Official Colon Cancer Logo

Blue Star is the Official Colon Cancer Logo

Recently, Lisa wrote us and shared her FAP to J-Pouch Story.  FAP (Familial Adenomatous Polyposis) is a genetic disorder that causes polyps and often cancer in the colon. It aggressively runs in families as you can see in Lisa’s story, but there is little awareness of the disease in the public.  With March being Colon Cancer Awareness Month, it is excellent to bring attention both to Colon Cancer screening, as well as, awareness towards FAP.

FACTS from the Colon Cancer Alliance:

—  1 out of 8 people will be diagnosed with colon cancer.

—  90% of colon cancer is treatable.

—  To learn more about Colon Cancer and early screening visit www.ccalliance.org to learn more accurate information about early detection, symptoms, etc…

We’ve often discussed Colon Cancer on this site in various ways, here is a flashback to some of our colon cancer awareness posts:

Please post your comments about your experience with Colon Cancer, any awareness is good awareness.

Relationships & Chronic Illness

by on Monday, March 9, 2009 6:39

File this entry under: relationships

loveThe NYTimes publishes articles about “Modern Love” that I often finding touching and interesting take on what relationships are about. I just read this article that is written by a man whose wife became a paraplegic in a car accident. It’s a wonderful story and I think it’s relevant here for two reasons: 1) it’s always useful to put things in perspective — being in a wheelchair sounds much more challenging that an ostomy; and 2) some loving relationships can overcome many challenges, including long and difficult illnesses and disabilities.