The Dreaded Pouchitis: Not as dreadful as space scurvey

You see, it took me 2 years and a trip to Argentina to get pouchitis. While there on a business trip, a steady diet of meat, more meat, and some meat, coupled with small breakfasts, very late dinners and no snacks in between, all upset my plumbing. I might have gotten a tad dehydrated as well and yes, I am now 34% fluent in Spanish. My last two days and the flight back was like an attempt at setting a world record for most bathroom visits. They should have punchcards for bathroom stalls where ten visits gets you a free sandwich, but I secretly hope that they will never sell sandwiches in bathrooms. The first thing people told me when I got back to the office (aside from “oh we thought you left so we divvied up your stuff”) was that I noticeably lost weight. Well, I did. Like 12 pounds.

In hindsight, Argentina gave me plenty of clues that they had it in for my j-pouch. This stall at a soccer/football stadium didn't even have toilet paper roll holders, let alone toile paper. An omen, if you will.

When I had this increase in frequency and odd pressure associated with the urge to push (you know, when you need to give a little push to gently remind your bowels that it’s showtime), I thought it was just a souvenir of Argentinean culture and not anything too bad. On behest of my friend (who happen to have been one of my nurses), I went to visit my surgeon to get it checked out. A cold finger poke later and she said yep, all signs point to pouchitis. Pouchitis is inflammation of the ol’ j-pouch, so it might feel like colitis again. Oh j-pouch, you trickster you. There was no something-something-osis (where there is some tightening, which I took as being bad), so I got a short dose of Cipro and I was fine literally two days later. Seriously, this is a cake walk compared to everything we’ve been through.

Pictured: me doing pushups in the middle of nowhere with pouchitis. See, still better than UC. Not pictured: a bathroom or a sea monster.

Scars: A roadmap to victory!

The scars themselves are minor footnotes in my journey to recovery. I could tell people that the scars are from when I was in a bar fight with a grizzly bear, but I take pride in where they come from and what they represent.

15 pounds heavier; it all went to the cankles.

It’s The Little Things: Being an undercover “Normie”

“Normies” are normal people. Having this newfound sense of health, I’m going in deep undercover into their shady, secret underworld of “physical activities” and “not being too concerned with where the bathrooms are”. And I have to say, it’s the little things that make you appreciate being healthy. This point really hit home for me when I recently went to a Rammstein concert and spent the entire show trapped up front in a wave of bodies, able only jump around and bang my head to rock out. I didn’t once get that sense of urgency or accompanying anxiety, and it was awesome. You know when I pulled this off last? 2001 when I was still pre-UC. I feel blessed to have this additional sense of perspective.

Supporting the Cause: Poop

Do you happen to live in the San Francisco bay area and want to be part of a supportive group but don’t like the idea of a sterile, boring support group and your expectations aren’t too high? Well we’re trying something different. I have joined forces with Gwendolyn, a friend and Team Challenge mate, to create a supportive social group for people who are affected by Crohns and/or Colitis. Check us out at http://www.facebook.com/SFSSG!

The SFSSG!

Progress, yo!

I censored the mooning. You're welcome.

These posts might also help out:

• March 27, 2010 -- Colston Thomas Mills (4)
• February 25, 2010 -- Commenter with Questions (13)
• April 5, 2010 -- Home from Surgery #1 (1)
• February 19, 2010 -- Blood, Poop, and Tears (3)

So, Belladonna is old school.  It has many uses, many names which include “Deadly Nightshade”.  It literally means, “beautiful woman” in Italian because drops made from the plant were used to dilate women’s pupils (considered attractive back in the day).  Although it is highly poisonous, it is very useful in medicine when compounded properly.  It’s used a lot for gastrointestinal problems like motion sickness and can be used as an antispasmodic to treat IBS and Crohn’s disease.  One compound is used to treat Parkinson’s, and others are used for heart resuscitation.  In my case, it acts as a muscle relaxant, helping my dyschezia (difficulty in pooping as a consequence of long-time suppression to defecate), anal spasms, it also helps with pelvic pain, reduces my trips to the bathroom, and helps me empty!   According to Wikipedia, in the past, when combined with opium, it was used as a “flying ointment” to get witches to their brew-ha-ha’s.  Seriously, look it up!  So, aside from hindering my mode of transportation, not being able to get this has resulted in increased rectal pressure, multiple trips to the bathroom, anal bleeding from said bathroom trips, soiling myself at night, not sleeping b/c I have to get up 3-4 times a night to poop, incomplete emptying…the list goes on.  So, basically, back to my crappy “normal”.

I can’t get it because there’s a shortage of the beautiful lady.  However, before (and I’ve only had one rx, by the way) it was no easy feat to acquire it either.  I felt like such a druggie calling all these local pharmacies and getting turned away because, “it’s a class two drug.”  Class one drugs are mostly your standard illegal drugs that they consider to have no or little medical use and are primarily used as a recreational tool to get you high.  Class one drugs include LSD, marijuana, “magic mushrooms”, meth, PCP, etc.  You get the drift.  (My research from the DEA’s website.)  Class two drugs have a use medically, but are narcotics like Dilaudid, Ritalin, OxyCotin, Percocet, etc.  You get the drift. Most of us here have had Dilaudid or some form in an IV drip after surgery or while hospitalized for pain.  It has the effect of getting you “high” but is such a useful tool for pain, it is still used.  Enter my suppositories.  The doseage is 16.2 mg of belladonna and 30mg of opium.   I should mention that in my research I found that belladonna can also be used as a recreational drug that produces hallucinations and delirium.  However, it’s poisonous and generally not worth that attempt.  I will admit, the first suppository made me kinda giggly and “loosy goosy” but had no ill effects the next day, so it’s not something one would use for a “high” effect.  However, it did make me super  happy because it helped me poop and relieved my pain and urgency.  Plus, after getting drug-induced lupus from man-made drugs, I was eager to try something natural.   And, it helped! After five years of trying, post surgically, to figure out what was wrong with me and to then find something so simple that helped and may help me live a more normal, productive life, and avoid surgery no. 8, I was ecstatic!

So, the first rx I had was a feat to have filled.  I eventually had luck with my mail order pharmacy who couldn’t imagine why I’d had such trouble in the first place.  One catch-legally, Dr. Shen can’t write me more than a month’s supply (b/c it’s class two), and it can’t be called or faxed in-has to be mailed in, by me…Who lives in Texas.   Dr. is in Ohio…hmmm. So getting refills should be interesting.  And it has been!  They faxed one in and that was denied, but I called Dr. Shen’s office and they are awesome and mail it to me so that I can then send in to my pharmacy.  I should mention that at this point I’ve been without it for two weeks and am crapping myself regularly and getting desperate.  Life without pain and pooping all the time is SO nice!  So, today I get a call from my mail order pharmacy…they can’t get it. UGH!!!  So, I call the manufacturer=shortage of belladonna.  I was shocked b/c I thought the issue had always been opium.  Anyway, I’m trying again to get it from CC pharm, but this will be the third (the other two were destroyed b/c they couldn’t be filled) rx for this in a month from me trying to get my medicine, so who knows if he can even write me another one legally.

So, is it just me, or is this totally ridiculous?  That I’ve finally found something so simple that helps, and I can’t get it because of regulations and supply problems (probably related to those regulations).   I can easily get something that could cause cancer, lupus, tuberculous, infections, the list goes on, but something with essentially no side effects I can’t get.  That makes perfect sense.

I’m going to try to find an alchemist or someone who can just make it for me and hopefully not poison me.

The lengths we go to for health.

These posts might also help out:

• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• September 12, 2010 -- I suck at being sick (24)
• August 5, 2010 -- Crohn’s…Again? (7)
• November 10, 2009 -- Just Dance! (8)

Dr. Bo Shen

Well, I finally made the pilgrimage back to Cleveland Clinic (CC) to see the famed “King of Pouches”, Dr. Bo Shen. As one involved in the J-pouch/IBD community, I had, of course, heard of Dr. Shen before. He’s sort of the last desperate act for a lot of people who come from all over the world to seek his counsel. I decided to go after a friend of mine and my mother’s met with Dr. Shen, e-mailed me and said, “Liz, you have to go. If your insurance doesn’t cover it, I will pay for it. He’s that good. He can help you.” So, by divine Providence, our new insurance did cover Dr. Shen, and I made an appointment immediately. When I called in October, his first available was January 18th. I was a little disappointed to wait that long, especially after developing the lupus issues, stopping Humira and feeling at a loss for IBD/J-pouch management, but enter more divine Providence. A friend I met, also through the IBD community, had her surgery at CC and was a patient of Dr. Remzi’s, a colleague of Dr. Shen. So, she got me Dr. Shen’s e-mail. He got back to me…the same day! A random patient he’d never heard of, never had a referral from, AND he offered to get me in sooner. So, here I am, writing about my appointment yesterday, and although it was a long, exhausting day of tests and appointments, (twelve hours to be exact), I feel so thankful to be in the care of this expert.

I arrived at 8:00 a.m. yesterday morning and checked in for my pouchoscopy. Naturally, I’d done my “prep” by drinking only clear liquids the day prior-no food. This is a struggle for me sans Prednione, but damn near torture after being on ‘roids for almost two months. But…I did it. The scope was my first meeting with Dr. Shen. I found him friendly, cheerful, and very informed. We talked a bit about my history, they loaded me up with Demorol (which I’m typically allergic to, but didn’t bother me yesterday) and Verset, and although I was loopy, I was able to watch the scope on the screen, watch him take the biopsies, and ask him probably the same question ten or fifteen times. When I was wheeled back into my curtained area, Dr. Shen came back to give me the images from the scope and review them with me. At that time, still under the blissful spell of Verset, I declared, “Dr. Shen, you are J-pouch Jesus. This is what I shall call you.” He cracked up.

After what was probably a much more lucid conversation with my mother, he scurried off to his next ass-reaming. He instructed me to go have several tests, “right now.” So, we went to his scheduler, and I went immediately to what I referred to as my “ass trajectory” test, although it was actually called marometry test. I lied on my left side, the typical ass-exam position, while a doctor placed some kind of sensors around my “hole”, then threaded a tube up my anus to my pouch. First, I did a few squeezes to test my muscle tone, then he inflated the balloon and asked me to tell him when I felt like I needed to have a bowel movement. I lied there for a while, waiting to feel something, and he asked me two or three times, “Do you not feel that yet?” I said, “Well, I can tell something is there, but I don’t feel like I have to go to the bathroom.” I told him, “After years of training myself to not go, I think my sensations are a little off.” Turns out, that’s true. Dr. Shen suspects I have dyschezia, which literally means, “difficulty in defecating (usually as a consequence of long continued voluntary suppression of the urge to defecate)”. The doctor doing the procedure moved the balloon down a bit and man I could really feel it then! It felt like a pain on the left side, similar to what I get when my anus spasms. I eventually was able to push the balloon out. I then wiped my ass, pulled up my pants, went to the bathroom and headed for the lab. There, I had several vials of blood drawn and was given a cup for a stool sample. Mom and I trotted off to building H to wait for my barium enema test, but they couldn’t get me in until 4:00 p.m. and they were running behind. My appointment (back in building A) with Dr. Shen was at 4:30. After not eating for two days, I finally hit a wall in the waiting room. I hadn’t been allowed to drink or eat after the scope in preparation for the barium test. Fierce bitchiness set in and I said, “Okay, screw this test. I’m done not eating. If I don’t get something to drink or eat in the next ten minutes I’m going to pass out.” So, we said sayonara to the X-ray lab and headed to the nice cafe nearby. I scarfed down a small portion of bland pasta and a few bites of yogurt-just enough energy to get me through my appointment with Dr. Shen. I wanted to be able to think and be semi-coherent during my appointment with him, and two days with no food, and a full day with no fluids does not a coherent no-coloned girl make.

We spent a good deal of time talking with Dr. Shen. He’s surprisingly informal, which might be the secret to his success. He gets you in when you need to see him, he doesn’t have someone make copies of your records, you just bring what you have and you sit and flip through them together. This is really nice because medical records are not always correct. Typos and misinterpreted dictation can lead to confusion, so it’s nice to be able to go through that with your physician. We also watched my defecating pouchography (x-ray video of me pooping) and he saw some pouch anomalies. He threw out about four possible theories for my problems. Two were functional (some sort of buldge around my anus/J-pouch that is too close to my vagina), a possible fistula from my J-pouch to vagina (eww). He is testing me for IgG4, autoimmune pouchitis, and then of course trying to determine if I do have Crohn’s. My pouch looked good in the scope because of Prednisone, so it didn’t look as nasty as it did during my last scope. I go today for the barium enema (more not eating) and another appointment with Dr. Shen. I really appreciate how thorough he is with his patients. I think it’s so refreshing that he really understands that it’s important to cram in as much as you can while you are here. He also told me that I should be tested for anklosing spondylitis, a concurrent condition that can occur with IBD. He also mentioned that I need to switch to an estrogen-based birth control pill.

What I’m listening to: De Stjil, White Blood Cells, and Elephant by the White Stripes.

Where I’m eating for my next meal: Mallorca, fine dining Spanish in downtown Cleveland
What I’m thankful for: All the kind people, my mother, J-pouch Jesus.

Cutest story: Our bellman, John, is also a pastor, and when we came down to get in the “ride” he’d arranged for us, he outstretched his arms, motioning for mom and me to come under each one, gently hugged us, bowed his head and began to pray for “Sister Davis.” I didn’t apprise him of my new surname. I figured God was privy. After the prayer, we turned around to see our car was a white stretch Lincoln towncar. Mom was crying from the emotional prayer, I was cracking up that we got a limo. We had a lovely conversation with our helpful driver. Nice way to start the long day.

These posts might also help out:

• November 10, 2009 -- Just Dance! (8)
• February 11, 2011 -- Belladonna Wars? (7)
• August 5, 2010 -- Crohn’s…Again? (7)
• February 25, 2010 -- Commenter with Questions (13)

UPDATE:  I have Lupus.  FML.

So…blood test results came back today. Yep, I have Lupus.  Hopefully it is medication-induced from a Crohn’s med. I’m taking and will go away when I stop it.  So, that explains the crazy painful arthritis and why my Crohn’s drugs weren’t helping it-they were causing it!  I’m laying here with a low-grade fever, covered in sweat contemplating my shit for luck and trying to count my blessings.  So, here’s hoping they can find another drug to control my Crohn’s that won’t give me yet another auto-immune disease.   I’m good on those for now, thanks.

These posts might also help out:

• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• November 4, 2010 -- Fear Monger, MD (6)
• February 25, 2010 -- Commenter with Questions (13)
• November 10, 2009 -- Just Dance! (8)

These posts might also help out:

• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• August 5, 2010 -- Crohn’s…Again? (7)
• February 25, 2010 -- Commenter with Questions (13)

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We have a long comment from Cynthia C. and she has a handful of really great questions for the jpouch community. Would you take a few minutes to read her post and see her questions at the end.

Thanks so much!

Megan & Mark

# Cynthia C. Cynthia C. says: February 23rd, 2010 at 11:52 am

Hello Everyone, My name is Cindy and I was diagnosed with Ulcerative Colitis in October of 2009. I first started having symptoms in February of 2008 while I was about 7 months pregnant with my son. I thought the mucus in my stool was a result of being pregnant with a very large baby. I felt fine, and had no other symptoms so I really didn’t have any clue I was developing Colitis. I’ve been healthy my whole life, active in sports and exercise, and at the time I had been a vegetarian for the last 12 years. I started eating meat again around the time I first noticed mucus in my stool. After I had my son, I noticed the mucus came back about three months later. But still no other symptoms. That went away, but in the fall of 2009 the Colitis came back and it was no joke this time. First it started with mucus. Then I began to notice I started losing weight and finally, I began to get really tired. I was starting to get worried, because trips to the bathroom were becoming more frequent and hard to hold. The next and scariest thing that started happening was the blood. I began to bleed little at first but by September of 2009 I was bleeding a lot. I began the process of “freaking out” with the idea that I had colon cancer. I can’t even tell you how scary it is to ponder the cancer cloud hanging over your shoulder. I would just look at my family, my new son and become so utterly depressed. My husband began insisting that we make an appointment with a doctor to really find out what was wrong so I could stop this fantasizing of the worst. I knew I was secretly avoiding this because I was so scared to find out what I had. Finally though, I scheduled an appointment and had my first colonoscopy done. I was so scared to go through with the colonoscopy! It turned out not to be so bad, but man, I’m sure a lot of you already know how disgusting the laxative is to drink. It’s the worst part. I never finished it and it turned out to be fine. We were told the results of the colonoscopy right after the procedure and that’s when I found out I had colitis. No cancer! It’ didn’t hit me right away and I really don’t know if it still has, even though I’ve been through the pain and suffering of having Colitis. My GI doc prescribed Asacol and Prednisone. After three weeks of suffering on Asacol, we discovered I was having a serious bad reaction to it. I became so incredibly sick. The colitis got worse, I could barely walk, I began seeing these intense spots through my eyes, my teeth looked like they were becoming transparent, I was losing weight, and then my liver became inflamed. Finally my GI realized it was the Asacol and I was then put on 6-MP. What a disaster 6-MP was. It had the same effect the Asacol had on me. Suddenly my life was at a standstill. Now its Christmas time and at this point I had been extremely ill for three months. My husband had almost used up all his vacation at work, and my daughter and son were feeling the effects of my illness. The whole family literally became depressed. We were all just so scared and i know I was definitely suffering from depression. I couldn’t spend any time with my 1 ½ year old son and he wanted me so badly. I’m a stay home mom, so he had been used to being with me every day. I know that Prednisone was having an effect on my moods and ignited the depression in me. I got to the point that I couldn’t even laugh anymore. It was like there was a block on laughter in me. Finally, my GI took me off the 6-MP because again my liver was inflamed. I now weighed 114 lbs (I started off at 138) and it’s now January of 2010. The prednisone I was on was horrible. I couldn’t sleep at night and I was so shaky all the time. To top it off, it wasn’t even holding the colitis at bay. By mid January things were getting bad. My husband and I began discussing surgery. I decided I didn’t want to be on meds anymore. This was extremely important to me. I don’t want to take medicine my whole life and then find out 1) they don’t work anymore or 2) I’ve developed some other disease from them, and 3)I wasn’t about to take Remecaid after reading up on all the side effects. So, we scheduled an appointment with the surgeon and set a date to proceed. I couldn’t believe I was about to do this. But if it meant no more colitis, then it’s worth it. I’ll do anything to take this feeling away!! My surgery was scheduled about a month away. At this time I was so sick, it was almost impossible to get out of bed. I was now 100 lbs. I looked like a skeleton and I had dark circles under my eyes. My surgeon decided to bump up my surgery ASAP so now I was scheduled for it to take place in one week! We went over different options and decided on a permanent illeostomy, which gave me the option of getting the j-pouch surgery when I was back to normal weight and my body was healthy again. I decided to just give the “bag” a chance. It was a great relief to know I could go back and get the j-pouch surgery at any point in my life. The week before my surgery I was so scared and nervous. I could not fathom that this was happening to me. I was very excited to get the surgery done, but that emotion was mixed with an intense fear. I’ve never been in the hospital before except to have my two children, so I was really frightened. I was also feeling this strange loss of the fact that I would no longer have a colon! My colon, the thing I was born with, was just going to be taken out and incinerated! Weird. Anyways, the surgery was not as bad as I imagined. The pain was intense at times, but nothing like having a baby! I just upped my epidural dose or took more pain pills and voila! The pain was gone. Being in the hospital for a week was probably the worst part. Even though I had some really awesome nurses, (and one HORRIBLE one) it was so awful being stuck in the bed and not able to move around. And then there was the BAG. I just kept reminding myself that the colitis was gone. My colon was gone too. Dealing with a bag of poop was okay compared to not having a life with my family. I was lucky too. A woman next to me was dealing with cancer. And people in Haiti were suffering big time. Now it’s been three weeks and I feel pretty good. I’m still sore, but I can go places, clean the house, take care of my toddler Finn, and laugh again! My family is back on track, no more sadness in the house, and I can drink coffee again! My husband was an unbelievable support. He not only held down the fort, but took care of our toddler, my 17 year old daughter, worked two jobs, and continued working on an MFA, AND took care of me the whole time. I wish I could give him a vacation to Mexico with unlimited fish tacos and beer. I’m on a low residual diet for a while and can hardly wait until I can eat regular foods and have some wine! The most wonderful feeling is not feeling the colitis in my body. It’s incredible. And the best part, is it will never come back! I’ll be off steroids in one day. I didn’t find that changing the bag was all that difficult. I can hardly wait to find a bag that feels comfortable and suits my needs. Clothing though is becoming a huge problem. My pants close right over the stoma. I need advice what to do about this! I’m not about to wear jeans that go up to my waist! Do they even make those anymore? Plus, I’ve lost so much weight nothing fits and I don’t want to buy anything until I gain my weight back. So thanks to anyone who took the time to read my story. I’ve left out so much believe it or not! I have so many questions to ask all of you- I’m hungry for advice! I appreciate any responses.. Thanks again!

1)Anyone have advice on some sort of “cover” for my bag to not only hold it in place but to conceal it a little better. It’s so annoying how the plastic clasp can hang between my legs. I’m looking for just some sort of band.

2)Advice on clothes!

3)What type of bag works best for you?

4)When can I expect to feel normal, with no more pain from surgery?

5)Did any of you have back pain after surgery? My back is killing me!

6)Should I expect a weird feeling after I stop taking steroids? My Doc said I may feel strange, even though I’ve weaned them off. Okay, I’ll leave it at that for now.

Sorry this is so long! Thanks! Best, Cindy

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• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

After that I continued on like there was nothing wrong. I wasn’t having really any discomfort that I could tell just the blood. I graduated and went on to join the ARMY. I love it, it was my childhood dream to be a soldier! I made it through basic training effortlessly, with the exception of my second kidney stone and became a generator mechanic. After graduation I met my now ex husband. We were married after knowing each other maybe 6 months. He was horrible, enough said on that topic! Once at my unit the bleeding got worse and along with it came stomach discomfort. To make a long story short I had the necessary scopes and no diagnosis could be made. I was medically chaptered out of my dream job.

So with my broken heart and my bloody poop i started a new journey. I left my ex and filled for divorce, I enrolled in school and did a lot of “living it up” for a few good years with no real problems other than some blood here and more there. I didn’t think to much of it. I became more comfortable with the fact that this strange thing was happening and I would joke about it with my close friends.  I continued to get the freaking kidney stones. I turns out the older I get and the more of them I get the bigger they become. In the span of maybe 3 years I had to have 3 lipotripsy procedures to remove some I couldn’t pass. What a pain in the ass that was!!!!

Almost 2 and a half years ago I met my now boyfriend Mike. I was kidney stone free and still bleeding when I would go to the bathroom. A year into our relationship Mike went out to California for a summer internship leaving me in North Carolina. The month he left things started taking a turn for the worst.

With the Army, a failed marriage, countless kidney stones, twice as many moves and job changes, as well as tons of other challenges to boring to get into here, I became this “tough bitch” as my mother calls me. At this time I was a personal trainer, my second dream job. I had been a personal trainer for about 2 years at this point and I was really into eating right and training hard. It was my life and I loved it. I was trying to train so I could eventually do a figure show so I was training harder and eating better than I ever had before. When the bleeding began to get worse I ignored it, I didn’t want to admit that something was going wrong because in my mind that would mean weakness.

About three weeks after the increase in blood the stomach pains and diarrhea started. Still I though I could tough it out and it would pass. I didn’t have health insurance at the time and I sure as hell wasn’t going to wrack up a bunch of medical bills. I went out to visit mike and I didn’t tell him was was going on because I was embarrassed.

A month later I was sicker than ever. I went back out a second time to see Mike and by this time I had told him and my mother about what was going on. When I got back home after my trip  I was in way over my head and I didn’t know it. I just kept plugging away. Walking around as though nothing was going on and I was fine.

Things got so bad that it started affecting my work. At this point I was the general sales manager for this training company and I just couldn’t stay out of the bathroom long enough to do my job. I ended up telling my bosses about what was going on. I still didn’t want to see a doctor because I still didn’t have insurance and because I was scared.

As scared as I was I was still joking and making light about it with my best friends. The best way to cope with it was to joke about it. Things go so bad that I was going through a roll of toilet paper in one night, and just thinking about how much that actually was makes me laugh.

The blood became horrible, and the pain was worse. I had dealt with pain in various forms all my life and this was just the same. Pain. It has always been easy for me to walk around in pain and show no sign of it. Pain to me was just an annoying thing I had always been able to ignore.

It wasn’t until I crapped my pants the first time that I thought ok I need to got to the doctor. I went and had a bunch of tests ran and nothing turned up. I needed to go see a gastro guy because my regular doctor though it could be Crohn’s or UC. Still without insurance I hesitated to go to the specialist.

Things continued to get worse and worse. I was going to the bathroom in my pants at least once a day, my work was really suffering and I was lost. Then about a week and a half before Mike got home I stopped going to the bathroom. Then only thing that would come out blood and a lot of it.

Mike finally came home on august 1 2008 and we moved into our first apartment together the same day. The very next day on the Aug. 2 Mike had to take me to the ER. I still hadn’t gone to the bathroom and I was in the worst kind of pain. I was at the ER for a total of only 2 hours. After telling the ER doc what had been going on he told me that I wasn’t constipated I just didn’t have anything left to poop out because of how long I had diarrhea. An x-ray quickly proved him wrong. He gave me a suppository  while I was there and of course that didn’t work. He sent me home telling me to pick up 2 bottles of citrate magnesium and drink them both. I did and I though I was going to die. Thank God for Mike, he was so great about being there for me.

Four days later we were supposed to fly up to New Hampshire to see Mikes family. I went back and forth trying to decide weather I should go or not and finally figured that I shouldn’t be left alone for that week and went. On flight up there I had an accident in my pants shortly after the flight took off. I was sooooo  pissed at the time and Mike was so calm and so supportive saying ” Don’t worry we’ll get there, get your bag, change your cloths and no one will ever have to know. Its going to be alright.” I would have lost it if it wasn’t for him!

Once we got there his parents were great. I couldn’t do anything except lay around. I felt so horrible and I was so embarrassed. The day before we were to leave I spiked a fever and was by far the worst I had been yet. Mike parents took me to the hospital and after being to told that I may not have made it another night my mother flew in from NY. She was terrified, she had no clue how bad things had really gotten because when I talked to her about it I always would tell her “Mom don’t worry I’m fine.” Even when she was told about my horrible condition by Mikes mother I still tried to tell her I was fine. I am a nut is what I am!

So after 5 or so days in the hospital they thought that I had UC and released me to follow up with my gastro at home. The day after my release my health insurance kicked in! Since I didn’t have a definitive diagnosis i was in the clear with the insurance. No preexisting condition.

I went home and went to a gastro guy in my town. He determined that I had Crohn’s. He put me on a ton of steroids and anti- inflammatory drugs. For a while they seemed to make things better and I was starting to get back to my life a bit. I had dropped about 25 pound over the course of those three months and I was ready to get back in the gym. The day I went back to work I was fired. My boss told me that because I was still not feeling good that I was best we went separate ways. It was BS but I knew that it was for the best. I couldn’t do that kind of work right then. After leaving that job I didn’t work again for almost a year because I was so sick. Sooner than later the meds stopped working and I started to regress. I was brought in for another colonoscopy and it went horrible. I woke up during and was so freaked out I transferred to Duke University Hospital and never went back to that guy.

All this while I was still using crazy amounts of toilet paper and still crapping my pants. The going to the bathroom in my pants was a huge pain in the ass but I still found ways to joke about it. It would happen all the time. In the car, while walking the dogs, when I was out for a run, in a store, anywhere and everywhere. I had to bring spare cloths every where.

Once I got up Duke my new gastro wasn’t convinced that I had Crohn’s but she wasn’t convinced it was UC either. This started the back and forth process. It lasted several months and through several failed drug treatments. The last drug treatment I tried was Remicade, it didn’t work. The next option was to talk to the surgeon. I went and had a cat scan done and it showed that not only was my colon extremely diseased but it was also one big hunk of scar tissue and was no longer working correctly. The final determination was that it would have to be removed. She told me about the surgery, about the bag, and about what to expect. I was terrified and Mike just kept telling me its going to be ok. He would say I had to do this because he didn’t want to see me sick anymore. I went home and got on the internet. Big mistake.

When I called and told my mother what needed to be done we both cried. I couldn’t even think about it without getting sick to my stomach. I was so scared, more scared than I had ever been in my life. A week or so went by and I accepted what needed to be done, schedule the surgery and started to prepare.

The date was about a month and a half away when I got really sick again and the surgery had to be moved up to within the following week. My mom was freaking out. I know I haven’t mentioned her much through all of this but she is my best friend and I would not have gotten through this without this woman! We scheduled her flight and waited. Mikes parents came down and spent time with us before the surgery and stayed for support. My mom flew in the day before and went to pre op with me. Once she saw that I was ok with what was going on she kinda let her fear go.

I had the surgery on Sept.  9 2009, it lasted 5 hours and 45 mins and it went as good as anyone could have asked. She got all the bad parts out and constructed my j pouch. It went so smooth and everyone was pleased with the out come. The recovery on the other hand was a different story. I was in so much pain every day I  couldn’t see the light at the end of the tunnel. My dad and my step mom came down and I could hardly even stand to talk with them it hurt so bad. I never knew such pain! There was one day the pain was so bad that the only memory I have of that day was seeing all these bright colors. My mom told me what had happened when I came back around the net day. She said that it was so bad that I sat up and asked for her cell phone. When she asked why I told her that I needed to call 911 and get some help up here. She said even though she was scared and worried I still made her laugh. She told me hun I think were at 911.

I had a poop bag and it was nasty and weird and I didn’t want it. The first bag change was horrible and it hurt so much I cried.  I was in the hospital for a total of 9 days following the surgery. When I was released I was still hurting but I was better and determined to go home and heal.

I was sent home on a Thursday, Friday I stopped peeing, I went 12 hours without going pee. My mom had to take me to the local ER to be drained. I left with a leg bag and a lot of relief. Saturday we rushed back in the middle of the night to have the leg bag taken off because it was causing me to much  pain and I just couldn’t stand it anymore. They took it out and sent me home. To my relief I could pee again. Sunday I woke up in even more pain. I called the surgeon and she told me that it sounded like a blockage and to get to the ER asap. So I went to my local ER again and the shipped me back up to Duke where I had to stay anther 3 days while the blockage passed.

While all this was going on, I was trying to get used to my new illeostomy bag. It was so hard and so familiar at the same time. For some reason I felt like I had been there done this before. It was strange, like da ja vu or something. Anyways it was nasty and I got poop on my hands a lot. Changing the bag was a pain in the ass. I would take the bag off and the stoma would start shooting poop out all over the place. I Hated it and I never smelled nastier poop before.

I was released and the following day I flew home with my mom to recover leaving Mike at home to take care of our dogs. While in NY I was still having all kinds of issues. First of all the biggest of my incisions had opened up and the area around my stoma separated from my skin and they both stung soooooooo bad. Second I stopped peeing again and had to go to the doctor to get relief. The doctor was great and he arranged a home care nurse to come and help me out. Third I started developing these large bumps on my skin, almost like boils. They were popping up on my but and in my arm pits and they freaking hurt.

I tired two different times to fly back home to Mike, the first time I was just not ready to travel alone so we put it off another 2 weeks. The second time I was ready, doing better than ever and I wanted to go home. The night before I was supposed to leave I had dinner at my dads. After dinner I was on my way to meet up with my best friend Michelle and on the way there I started getting cramps and I though wow…Odd…

I spent a few hours with Michelle and all the while the cramps were getting worse and worse. When I finally left they were so bad I was starting to get worried. It was late when I got to my moms so I didn’t want to wake her, besides I thought it would pass in the night. Well it didn’t and I didn’t sleep at all. In the morning my mom came to check on me and I was crying and balled up in pain. She asked what was wrong and I told her about the pain. She said “What did you do, what did you eat? I let you out of my sight one time and this is what happens.” Oh she was so upset. This was the day I was supposed to leave, supposed to fly home to Mike. Instead I had to go back to the hospital.

My mom took me to the small hospital in the next town over and from there the had to ship me to a bigger better place because x-rays showed 2 adhesions that had formed 2 blockages around my small intestine. Once at this bigger hospital the surgeon rushed in and said I have to operate with in the hour here’s the form sign it so we can go. I, excuse my language, shit my bag. This was nuts and I was freaking out.

They did the surgery, saved my life and made me feel better all in the same day. Later on they found out that the bumps all over me was a wicked staff infection and began treatment immediately. I became super sick all the sudden and had to have 2 blood transfusions and around the clock monitoring. At one point I stopped producing urine and they pumped me full of fluid for 2 days straight. This caused me to balloon up to this scary huge frog legged monster. I was around 110 lbs when I went in and I must have put 30 pound of water on. Thank god someone besides me noticed and told the doctor. They gave me a pill to help shed it off and I quickly did. I turned to my mother and honestly asked if I had stretch marks on my ass. She thought that was so funny, I did not.

Finally I was sent home and I felt so good. I was recovering right and healing fast. A few weeks later I flew back home to be with Mike and my dogs. A few weeks after that I was cleared for work and started working at the golf course I was working at before the surgery. Everything was going so good. I wasn’t sick anymore, I was back at work at back in the gym. The only thing I had to deal with was the dang bag. By the time I got back to NC I had a better handle on the bag and its many bad habits. It was easier to clean and change at this point.

Things have been going pretty good since my return to NC. I have had very few problems with the bag although just dealing with it on a daily basis sucks. I have had the bag leak a few times in the middle of the night making huge messes but thats really the extent of it. I do joke about it a lot because its easier but inside I can’t wait to get ride of it. Having this bag has been the biggest struggle of my life. It consumes my every though and I’m so self conscious of it. I have to try on at least 10 different outfits before I find the one that covers it the best. Showering is not an enjoyable thing anymore not to mention being naked.

I have tried not to let the bag run my life but its hard. A lot of times its easier to just stay at home in my comfy sweat pants then try and get dressed and go deal with people. My current job at the golf course has been great. The people there are really understanding at supportive.

On Feb. 5th I went to have a pouchogram done and found out that I have a leak in my j pouch. I was supposed to have my reconnection surgery this month, now I will have the small surgery to fix the leak instead. This will happen on the 22nd and I will have to wait 3 more months before we can try again.

I was devastated. I wanted to be put back together so bad. It took me a week to get over being upset about it. I have readjusted and found a way to get re-motivated and I’m pressing on. I have been going to the gym 5 time a week and forcing myself to get out and do other things. Mike has been a huge help through all of this and I am lucky to have his support.

I know that things are going to get better and I also know that things can always be worse.

I know that this is long but trust me it could have been much longer, I gave you the short and sweet version. Maybe I’ll get more detailed in later posts but I think that this will do just fine for now.

Thanks for reading, don’t mind the typos and good luck to everyone in this ever growing boat.

Sara

These posts might also help out:

• February 8, 2010 -- A little insight on my insides. (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)

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)

Weight: When I had UC, my weight would fluctuate as I had flare ups. When I got out of the first surgery, I was coming in at a 152 pounds. Now, I’m sitting around a 183 pounds and, here is the best part, it no longer fluctuates all over the place. I’m super proud of this achievement. It means my body is stable for the first time in 8 years!!

Poop: I still go more than an average person, but come on, people. Come on. During UC I had constant pains and had to run to the bathroom every hour or so. I now don’t have to rush or anything. It’s all rather casual now. My stool is also more controlled now (you know: solid, smells like flowers, wins awards).

Diet: I have less restrictions now than when I had UC. I started slowly, sampling various foods and transitioning my diet to new food groups. So far, everything is good. I do avoid a few certain styles of food because, well, the results were mixed. Leafy salad, corn, and Mexican food aren’t on my Favorites List, but there hasn’t been a food that totally wrecked me. For those concerned about Mexican food: no, you won’t have to sacrifice the deliciousness. But I do recommend you pace yourself ha.

Fiber: BeneFiber is awesome. I don’t have to take it as often. In fact, I haven’t’ taken it in over a month. Instead, I just take it when I’m going to try a new food or eat something that I know will cause issues (looking right at you, soup).

Meds: Aside from the occasional Pro Biotic (VSL #3) and multi-vitamin, I currently don’t take any medicine. For someone who used to take 12 Asacol tablets a day on top of other fun pills for many many years, this is extremely liberating. Weird, almost. But I feel like I earned this freedom by going through with the surgery.

Exercise: I go the gym 6 days a week. I’m not trying to get buff or win World’s Strongest Man, regardless of what my previous claims might have implied. Instead, I’m just really, really, really excited about being healthy again and am trying to maintain my health by helping my body out.

Scars: Check it out:

Aside from the large scar that I've had since I was a wee baby, you can barely tell.

Team Challenge: I learned about this from fellow j-pouch community member Elise. Team Challenge is having a fund-raiser half-marathon this December in Las Vegas for the CCFA and I’ve been training dangit. When I had UC, I couldn’t run unless it was straight to the bathroom. Now, get this, I can drive to the city, train, come back, and THEN use the bathroom. And when I say “train” I mean pretty long distances. This past weekend was 5 miles walking and 5 miles running. I’ve never run 5 miles in my life, ever. It’s soooo motivating to be surrounded by a team members all gunning for the same cause: finding cures for UC and Crohn’s. And yes, I’ve been raising funds. All of my fund raising goes straight to the cause: YOU. I’m doing this for everyone affected by UC or Crohn’s. I hope to make you all proud! Here is my fundraiser page. Lizz you better donate a grand or I’m sending you “questionable” pictures.

Training for a %$#ing half marathon.

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)