How does the pain compare to Crohn’s though?  It’s just…different.  I can’t say that it’s worse, although in some ways it is.  I could always be mobile with IBD-well, not when it had me bed-ridden, but I could generally haul major ass to the bathroom.  Not so with lupus.  I basically hobble everywhere, grunt or yelp loudly every time I get up or down.  The only way I can sleep is under a blissful pain-pill coating.  It’s basically affecting every other part of my body.  I have had diarrhea, but haven’t noticed much in the way of Crohn’s other than that.  My stomach isn’t terribly painful, but my muscles, joints, and bones are.  Skin, eyes, etc.  It’s just a totally different experience-different body systems, different pains, different restrictions.  I’ve been sleeping a LOT.  The only productive thing I did today, which basically turned out to be a complete waste of my time, was go to see a new GI here.  Now, the term “specialist”…don’t read too much into that, because the last few I’ve had have not known what to do with me.  I appreciate that a lot of weird, unfortunate shit happens to me-hence my seeking the assistance of an expert.  I did admire his bluntness, but he mentioned, more than once how severe and unfortunate my case was.  He said, and I quote, “I live in fear of your situation.”  I’m sitting there, hunched over in this chair, dead exhausted, covered in red spots, thinking, “Are you fucking kidding me?”  Believe me, I am FAR past sensitivities.  I like people that tell it like it is, but really, doc.   No shit.  I don’t need to know how bad I am.  I am completely fucking aware!  I need your help, not for you to state the obvious.   Which, is pretty much all he did aside from some blood work.

Now…on to the GOOD news! Yay, I lurve good news:) So, I think part of the reason I can deal with the crap storm around me is because I have faith and an amazing group of people in my life.  First off, the IBD/J-pouch community.  You will not find more helpful, generous people.  You guys rock!  Second, my friends and family are just so loving.  It makes it a lot easier to deal with this crap when you have a ton of people that truly love and care about you and want you to be better.   I have a lot of people in my corner.   This includes past doctors.  One, and probably my only good GI ever-from Vanderbilt- saw a post about me on Facebook and e-mailed me to see if he could help.  That’s pretty awesome.  Also, a good friend of mine recently saw Dr. Shen at Cleveland Clinic and essentially said, “Liz, you HAVE to see him. I will pay for it if your insurance doesn’t cover it. He’s amazing.  You have to go.” So, obviously that’s super sweet on a number of levels, but thanks to divine Providence or what have you, our new insurance covers Dr. Shen and all docs at CC, so that’s freaking awesome!!!  Also awesome, Miss Jackie Z., fellow jpouch.net blogger, got me Dr. Shen’s e-mail so I could touch base with him, inform him of my history, and schedule any tests.  During this exchange, he decided that I need to be seen ASAP and is getting me in this month!  Another prayer answered.

So, even though things have been sucky and I kinda feel like Goldblum in “The Fly”, I see a light at the end of the tunnel, I see hope, and that’s what I needed more than anything.

AWESOME UPDATE!!!!

At the urging of my GI, I went to a run-of-the-mill Urgent Care Center.  The doctor examined my eyes, rash, etc., gave me a shot of steroids in the ass, an Rx of Prednisone, and drops for my nasty eyes.  When I woke up this morning, for the first time since my last dose of ‘roids, I was not in pain!!! OMG, I cannot tell you how thrilled I was when I stretched out this morning and nothing hurt! All my joints moved with relative ease, but no pain! Ah!!!! I am so excited! Feeling good puts me in the best mood

These posts might also help out:

• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)
• November 10, 2009 -- Just Dance! (8)
• July 3, 2008 -- Sex and Intimacy (0)
• June 6, 2008 -- NY TIMES Jpouch Article (0)

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.

[link]

These posts might also help out:

• November 4, 2010 -- Fear Monger, MD (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (4)
• April 6, 2009 -- 4 feet less but still the best: My Jpouch Story (12)

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.

These posts might also help out:

• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• June 15, 2009 -- Teen Diagnoses her Crohn’s Disease (1)
• November 4, 2010 -- Fear Monger, MD (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)

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.

These posts might also help out:

• April 6, 2009 -- 4 feet less but still the best: My Jpouch Story (12)
• March 27, 2010 -- Colston Thomas Mills (4)
• February 8, 2010 -- A little insight on my insides. (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)

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.

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• April 6, 2009 -- 4 feet less but still the best: My Jpouch Story (12)
• August 8, 2008 -- Mark 9 month Jpouch Update (49)

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.

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• February 13, 2010 -- Take a walk in my shoes (93)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)

Granted, it is an “employee only” bathroom, but hey, what is the world coming to when someone poops their pants because someone else is worried about… er… what? What, exactly happens if you break the rules and let a customer into the bathroom? You get fired? They steal toilet paper? Fine.

I would gladly get fired for breaking the rules if it were in the name of humanity, decency, or any of those other words that end in a ‘y’ and connote positivity.

Here’s hoping the next clerk is a nice one.

These posts might also help out:

• June 15, 2009 -- Teen Diagnoses her Crohn’s Disease (1)
• December 29, 2011 -- Loss & Gain (2)
• February 11, 2011 -- Belladonna Wars? (7)
• November 4, 2010 -- Fear Monger, MD (6)

So what is your policy regarding IBD in the workplace?  It’s certainly nothing to be ashamed of, and I’m oddly proud of it, but I’ve lived and learned and am, for now, deciding to remain a mystery

These posts might also help out:

• August 5, 2010 -- Crohn’s…Again? (7)
• November 10, 2009 -- Just Dance! (8)
• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

Teen Outsmarts Doctors

In a timely fashion to Liz’s post on Lets Just Call it IBD, I just stumbled on this story this morning on the yahoo home page.  Apparently a teenage female had been sick with IBD-related symptoms for many years. The doctors called it IBD, probably colitis. She took tissue from her intestine to her high school biology class and she found signs of inflammation indicated Crohn’s Disease.

Read the full story here: Teen Diagnoses Crohn’s Disease Before Doctors in Science Class

Lesson of this story is that we know our bodies well and we must be active participants in the identification and maintenance of our health care.

These posts might also help out:

• September 16, 2009 -- Plaid Pantry Denies Bathroom to Crohn’s Customer (9)
• December 29, 2011 -- Loss & Gain (2)
• November 4, 2010 -- Fear Monger, MD (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)

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.

First came the steroids, iron infusions, and Asacol which actually made my symptoms worse. Then I tried just high-dose steroids but every time I tried to taper I got sick again. Then came 6 MP which induced horrible nausea and vomiting which made me lose even more weight, thus I had to stop this drug. Finally, I tried Remicade which, despite doubling the dosage, my colitis refused to respond. Humara became the final option but my medical team decided it was too risky due to a latex allergy and the cap on the drug injections had latex. I was out of options, scared, sick, and had lost all quality of life. I was 25-years old.

Hank the stoma. I had an end iliostomy as i was too ill to construct the Jpouch during the first surgery.

I was hospitalized end of October, 2008 for another flare that my doctors couldn’t get under control and another colonoscopy revealed that my disease had progressed to severe pan-colitis. I always knew surgery was probably eminent but it appeared that the time had come. I was transferred to University of California San Francisco Medical Center where my GI recommended the surgical team under Dr. Varma. On Nov 19, 2008 I underwent a laparoscopic subtotal colectomy with ileostomy. I was too sick at the time to do the jpouch construction so I just had my colon removed but my rectum remained for the next surgery. I was in the hospital 3 weeks prior to the colectomy gaining strength through TPN therapy and then an additional week post surgery. I went home 30 pounds lighter but thrilled to finally be free of this disease.

Obviously adjusting to life with an ileostomy has its ups and downs. I think it is harder for females as we are prone to have body image problems. I am usually not one to have problems with this sort of thing but the first time I looked down at my ileostomy I cried

Allergic Reaction to the iliostomy bag. I tried multiple brands of bags but reacted to each. Ulitmately i needed a perscription for steriod spray and used Duoderm as a barrier between my skin and appliance.

my eyes out. I think I cried for loosing an organ (given it was a bad organ but still an organ none-the-less), I cried for all the life that had been already taken. I cried because my hair fell out and I had bald spots. I cried because I was a newlywed and this wasn’t supposed to happen. Obviously there was some crying but eventually I adapted and settled in to life with the ileostomy. Besides having some severe contact dermatitis (as I am allergic to everything) my stoma did its job well for 13 weeks. I only had one problem with blockage but that alleviated itself with time. The dermatitis did cause numerous leaks but again this was something that I could deal with.

The 13 weeks between surgery passed quickly and my health drastically improved and I actually felt alive again. I put on 15 pounds; once again had energy to walk my dog, and bedtime was no longer 9 PM. It was amazing to once again feel like I had control over my body. I know that if something happens with my Jpouch, I can always go back to having an iliostomy and life will be fine.

During the period of time between my first and second surgery, my husband and I got a consult to learn more about the fertility issues we had read about as a result of Jpouch surgeries. My surgeon indicated that my fertility would be drastically reduced as a result of these surgeries, but didn’t go into the specifics so we wanted more information as we had always hoped that children would be in our future.

I was referred to Dr. Mahadevan at UCSF GI department who does research in the area of fertility, IBD, and Jpouches. Perfect! We learned that I would have between a 50-80% less likelihood of natural conception as a result of adhesions from my surgeries. We should try to conceive naturally for 6 months, however, if we remain unsuccessful, we will have to pursue IVF. Often jpouchers get pregnant with only 1 round of IVF since the issue isn’t with our eggs but the scar tissue which inhibits fertilization. Once pregnant, I will be able to carry full term however I will be considered high risk and therefore be under the care of a specialist. Also, it is highly recommended that I deliver via c-section to eliminate the risk of pouch tearing during vaginal birth. For my c-section, the surgeon will be able to use the same bikini incision as the jpouch surgery which will eliminate further scaring. The likelihood of passing on ulcerative colitis to our child will only be 2-4% which was also comforting news. I highly recommend any young females, who are considering this surgery, to consult with someone about fertility before getting the jpouch. Knowledge is power and it is good to know what options exist.

Surgical wounds immediately post-op. I had a drain coming out of my iliostomy site, a jp drain on the right (red) that was draining blood from jpouch, and the open scar across my bikini line.

On Feb 24^th, 2009 I had my jpouch created and my takedown done in one step again by Dr. Varma at UCSF. At the time of surgery, Dr. Varma did not know whether I would need another ileostomy or not. Fortunately, she was able to do all the remaining surgical work in one step; however, this meant a bigger recovery both in terms of hospital stay and recovery at home. The surgery went well and lasted about 2.5 hours. I then spent an additional couple of hours in recovery before going to my room. Again, it was nice to have things be familiar. I even had one of my favorite nurses from my first surgery as my main nurse during the recovery.

I spent a total of 16 days in the hospital recovering from the Jpouch surgery. I was told to anticipate a stay between 7-10 days, however, my body tends to heal more slowly due to my steroid use and I did have a few complications that posed some setbacks. The first few days of recovery went pretty smoothly and I was in less pain than I had anticipated due to the PCA pump. On the second day the nurses had me up and walking, although, I only made it to the entrance of my room before having to turn back. The next few days were more challenging as my guts refused to wake up despite my strongest pleads. I went for a CT scan that showed no leaks or abscesses so they diagnosed me as having a post-operative ileus which basically means an extended period of time where the intestines don’t wake up. My medical team informed me this occurs in about 25% of patients.

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.

As a result of the guts not waking up and the liver continuing to produce bile, severe

Belly post-op day 8. As a result of the ileus, my belly has become hard and distended.

nausea and vomiting often occur – as it did in my case. Throwing up every 30 minutes is never fun but especially after you have just had open surgery and with every wave of nausea you feel like you are ripping open your insides. At 3:00 AM one night the nurses put in an NG tube which is a tube that is thread down your nose through the back of your throat and into your stomach which then suctions up fluids. The tube is rather uncomfortable going in (request nose and throat numbing spray if you need to have this done!) but once it is in place, I immediately felt better as large quantities of bile left my body.

Another problem with the intestines not waking up is the inability to release gas or stool from your newly formed pouch. In my case as the pouch was constructed and immediately put to use, my doctors didn’t want to let things build up and stretch the pouch so I had to have the pouch intibated multiple times per day. Basically this entails having a catheter placed up your bottom into the pouch and it is left to drain into a foley urine bag for about 30 minutes at a time. As I was unable to pass gas, I immediately felt better after this was done as it released all the gas that was built up in my pouch. I had no idea how painful gas pains could be until I experienced this ileus. I was told to avoid pain medications as they just further slow down the bowel and narcotics don’t work on this type of pain. The only things that provided relief from the gas pains were heat packs on my stomach, walking, and intibating the pouch.

14 days later the ileus finally resolved itself but I was still only having about 5 bowel movements per day therefore I continued to have to have the pouch intibated and would continue to do this at home for the first week. Now I am six weeks post-op, have been given a clean bill of health from my surgeon, and can have bowel movements without the aide of the catheter. The first four weeks I was told to follow a low fiber, soft diet which I didn’t mind as I could tolerate more foods than when I had ulcerative colitis. Now I have been given the liberty to expand my diet however I was told to take it slow as some foods will obviously cause irritation.

In terms of bowel movements, I go between 8-10 times a day which includes 1-2 bowel movements at night. I am just starting to experiment with Immodium and Lomotil so I hope that this slows things down a bit. At this point I am having relatively formed bowel movements so I was instructed to stay away from the fiber as that may actually cause difficulty emptying the pouch.

In the coming weeks, I remain hopeful that my strength and energy will return as I still struggle with fatigue . I nap every afternoon for a couple of hours and get tired after simple outings such as going to the grocery store. My surgeon says all this is normal, especially with a combined 2nd and 3rd step; the body just needs time to heal. Even though it has been a bit of a rocky road to recovery, I have no regrets regarding my decision to get a j pouch. Even now at 6 weeks post-op, I have more quality of life than I did with ulcerative colitis and I know things will just continue to improve. Thanks for letting me share my story and I wish anyone about to go through these surgeries the best of luck in their recovery!

Wounds 6 weeks post-op. The iliostomy is completed closed as of yesterday! Still have the outline where my bag sat and puffiness in the belly.

This profile pic you can see the bump above my old ilio site. The surgeon says in time, and with some abdominal/core work, this should go away.

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (4)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)