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 (7)
• March 27, 2010 -- Colston Thomas Mills (5)
• February 8, 2010 -- A little insight on my insides. (12)
• February 19, 2010 -- Blood, Poop, and Tears (2)

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:

• April 5, 2010 -- Home from Surgery #1 (1)
• April 6, 2009 -- 4 feet less but still the best: My Jpouch Story (7)
• August 8, 2008 -- Mark 9 month Jpouch Update (48)
• June 6, 2008 -- NY TIMES Jpouch Article (0)

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 (59)
• March 27, 2010 -- Colston Thomas Mills (5)
• February 19, 2010 -- Blood, Poop, and Tears (2)

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)
• March 15, 2010 -- “You’re Fired.” (15)
• November 10, 2009 -- Just Dance! (8)
• September 3, 2009 -- From the WTF? Files: Man East Colostomy Bag Contents (3)

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:

• November 10, 2009 -- Just Dance! (8)
• March 15, 2010 -- “You’re Fired.” (15)
• February 25, 2010 -- Commenter with Questions (8)
• February 8, 2010 -- A little insight on my insides. (12)

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)
• March 15, 2010 -- “You’re Fired.” (15)
• November 10, 2009 -- Just Dance! (8)
• July 15, 2009 -- Don’t Ask, Don’t Tell (12)

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 (5)
• February 19, 2010 -- Blood, Poop, and Tears (2)
• February 8, 2010 -- A little insight on my insides. (12)

I get the kind of migraines where if you had a spoon handy, you’d dig your eyeballs out just to see if that’d lessen the pressure and pain in  your head. I also get the kind of migraines where you puke your guts out. Well…what’s left of them.

Now, I consider myself to have an impressively high threshold for pain, especially for abdominal pain. I love it when they ask you to “rate” your pain on a scale of 1-10 to determine how bad off you really are. I think…”Hmmm…well, really, I had absolutely nothing better to do at 2am on a Friday night. I got this dull little head ache, and just brought the barf-bag along for shits and giggles.” They were really good though. I have to say this is one of the more efficient ER’s I’ve been in. I got some Phenergan and Imitrex via IV, passed out, and awoke feeling much better.

I’m back home sitting on my couch writing this in my probably barf-covered PJ’s, just glad to have my head out of the toilet. It was somewhat amusing to answer the question, “Do you have diarrhea?” with a “No.” That hasn’t happened for a while!

So, cheers to the J-pouch for hangin’ in there while I was pukin’ everything I put into it back up. (Sorry for confusing you on the food-routing there, buddy!) And thanks to being Crohn-ed and colon-less to getting me an express one-way ticket to the ER bed. Thanks to all the prior hospital visits for the absolute lack of anxiety about the ER, the IV, and thanks for the many prior stick-and-miss, vein rolling experiences for knowing which vein was best for the IV.  I am truly not bitter to have this all down pat. Ironically, that was not sarcasm.  I am just grateful to be able to receive medical care that will relieve my pain, and get me back to the “real” world.

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• April 18, 2009 -- UC v. Crohn’s Questions (3)
• March 27, 2010 -- Colston Thomas Mills (5)
• March 15, 2010 -- “You’re Fired.” (15)

 

BMs in 24 hour:  Going to the bathroom 6-8 times a day has just become part of my routine, because I don’t feel sick, there is no urgency so when I have to go thats it, I have to go.   I don’t have any urgency, and no leaking. The consistency of my movements is pretty normal, a lot like before I had UC, basically formed and looks the same.  Here is my BM schedule for those of you interested: 

2 BMs when I get up and start my day  (don’t eat breakfast)

1 BM after eat Lunch

1 BM before dinner

2 BMs after dinner before bedtime

1 time in the middle of night between 3-4 am

Gas:  Simply put, I am pretty gassy.  My gas may be from metamucil or what I’ve eaten.  I have found that the gas is a lot of what I realse during the daytime when I go to the bathroom, sometimes the gas puts pressure hurts in my abdomen but when I pass that I feel fine. 

BM noise in the bathroom:   Sometimes it is quiet but sometimes it does sound pretty splatter like. 

Weight Gain & Body Changes:  My stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo http://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay Megan likes to tease me about my “middle-age bulge” – she thinks its funny.

Sexuality:  I have some again, thank goodness!  UC days it seemed sex wasn’t a huge interest.  Now, I feel healthy and normal, and I have full function – no physical problems, all my parts seem to be working well.  And my interest or libido is back, maybe not like before UC days but I’m also not a youngin’ these days. 

Medicines:  2 imodium in the morning, spoonful of metamucil in the morning. And then the same at dinner time.  What I think is that when I don’t take the immodium or metamucil my BMs just become more liquid, and more liquid means more butt burn.  Therefore, the goal for me is to keep the BMs more solid.  The immodium and metamucil do not seem to cut down on the # of BMs, just the consistency.

Drinking Alcohol:  The big question asked is can drink with my jpouch?  And the answer is YES, I do.  Here is what I’ve learned for myself (of course everyone is different), but for me, light domestic beers don’t bother stomach, things with high hops (microbrews, etc..) seem to be too heavy and I feel bloated and I feel hungover from drinkinng even 1 beer.   Red wine and thats been fine.  Crown Royal and Coke doesn’t bother me either.  Other than that I haven’t tried many drinks.  Also, I don’t tend to drink so much that I’m drunk, just more causal.

Hemorrhoids:  Mild

Butt burn:  Don’t really have it, if I eat or drink poorly and that makes my BMs more liquidy then I will have some burn, but overall this isn’t an issue for me at all. And if I see the burn coming then I do whatever is needed to get my BMs thicker. 

I LOVE MY J-POUCH – I HAVE ZERO REGRETS!  Mark

 

These posts might also help out:

• March 27, 2010 -- Colston Thomas Mills (5)
• July 18, 2008 -- Best Case Scenario (5)
• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)

My Mom is having surgery on her eye for glaucoma, and she is currently in a state of fear. All she can say is “what if the surgery goes wrong and I lose sight in my eye?”  A rightful fear, for sure – however, I never hear her say, “80% of this surgery works and removes the pressure from the eye and can solve the problem.”  Right now she is so involved with fear that she can not see BEST CASE SCENARIO, she will only see worst case scenario.

I just know that when we were coping with Mark going into to surgery we spent so much energy (as in years) dwelling on what could go wrong, and almost refusing to see what could go right.  As you know, his outcome has been all the scenario of “what could go right” so we wasted spent so much energy worrying about what could go wrong.   Of course, I know in retrospect so much easier now to say to you “See best case scenario” – but seriously, don’t forget to see your “best case scenario options“.

Awareness of impermanence is encouraged, so that when it is coupled with our appreciation of the enormous potential of our human existence, it will give us a sense of urgency that I must use every precious moment” – The 14th Dalai Lama

Photo via: Fanboy30

These posts might also help out:

• July 14, 2008 -- A picture speaks 1,001 words (0)
• July 12, 2008 -- Tony Snow: Dies at 53 yrs (0)
• July 11, 2008 -- CCFA Billboard (0)
• July 6, 2008 -- 1 Year Anniversary NO UC! (8)