Bloody Shit.

by on Saturday, September 14, 2013 8:05
This entry is filed under: Coping/Support

No, I’m not British.  I’m an angry American girl who woke up at 5am and shit blood out her butt despite having an ostomy that’s supposed to be doing my shitting for me.  I’ve been shitting blood for half my life.  Let’s re-cap:

At age 15, I got violently ill one night, shaking and having uncontrollable blood + mucus diarrhea with a side of projectile vomiting.

A year later, at age 16, while making a scrapbook for my grandfather for Father’s Day, I got up to use the bathroom in our basement and stood up to notice blood running down my leg.  After getting a diagnosis of Ulcerative Colitis and refusing a recommended immediate total colectemy, I spent the remainder of high school on high-doses of steroids and “maintenance” drugs that were supposed to keep me in remission.  Problem was, I never went into remission. Even after ballooning up from Prednisone, having worsening acne, sweats, moonface, hair growth, and insomnia, my poop was still coated in blood. There was always blood.  For 6 years, every time I went to the bathroom there was blood. It didn’t matter how much medicine I took, new drugs, old drugs, none of them got me into remission.   They made things semi-manageable until I was a Junior in college, then my shit had turned exclusively to blood, and lots of it.  I’d shit bowl-fulls 30 times a day.  I didn’t eat, I drank Gatorade, I writhed around in the bathroom floor of my college apartment praying for death or a miracle.  After a one month remission, I decided it was time for the surgery I’d put off for so long.  I opted for a J-pouch and felt better after my total colectemy in 2005.  However, if you read my earlier blog posts, you know my pouch failed and I had 7 more surgeries to try to fix it, or deal with a fistula.

The last surgery was nearly 4 months ago now. June 18.  I had a loop ileostomy to divert stool from my J-pouch, to give it a break and give my body time to heal.  My recovery officially ended at the end of August, so today marks 2 weeks that I’ve been out of recovery.  My recent blog posts have bragged about my ostomy and how much better I’ve felt.  I’ve said I’ll stick with this disconnected pouch and let it hang out in there as long as I can avoid diversion pouchitis.  The problem with this loop ileostomy is that it has two openings. A distal and a proximal, which means that unlike an end ileostomy, stool can still go through the pouch from time to time, which means that I get to poop from my ostomy and my anus.  I’ve had mucus from my anus pretty much since the surgery. That was “normal” and to be expected.  However, last week, I noticed some blood when I pooped, and this morning there was significantly more.  Something about seeing blood-covered toilet paper accompanied by blood in the toilet bowl sends me into a state of PTSD-like shock.  When I saw the blood on the toilet paper this morning, I froze.  My mind shut off and my body was on automatic pilot.  I flushed, washed my hands, went downstairs and stared at the wall for a solid 5 minutes before thoughts entered my mind again and tears welled up in my eyes.  My first thought was, “How is this still happening, after all this time, after all these surgeries, after all the drugs and everything I’ve been through. How is this seriously happening again?”  That lead into, “This is never going to end. No matter what I do, no matter how many surgeries I have, what, or how many drugs I take, I am always going to be sick.  My body is always going to remind me, each time I think I’ve gotten ahead of this disease, that I haven’t.”  More tears came, then Rob came downstairs because he heard me crying.  He held me tight as I sobbed so hard I started hyperventilating.  Through frustrated realizations voiced aloud, I voiced how fucked I felt.  How tired I was.  How no matter what I do, when I think I’m in the clear, bam. The blood is back.  After I calmed down enough, I emailed Dr. Shen to tell him there’d been more blood, “What do I do?” I’m going to try short chain fatty acid enemas, cause you know, despite having an ostomy, my stupid J-pouch is still in need of medical treatment.

So, two weeks. Awesome. I guess I felt okay during the recovery, so that’s something, but still. It would be NICE to have, oh, I dunno, a fucking YEAR to feel well before the shoe dropped.  TWO WEEKS out of recovery, my body rebels.  Par for the course.

I know you guys aren’t used to hearing this side of me.  This is the dark, pissed-off Liz I try to suppress with yoga, prayer, meditation, and probably denial.  But I also cling to hope until this happens, then I have a day or two of being angry and destructive and I get it out by use of creative outlets like writing, so thank you for bearing with me and being a part of my recovery into sanity.

The thing that frustrates me the most is that I feel like no matter what I do, no matter how much control I think I have, I really have none.  This is part of life with a chronic illness.  Cut the offending organ out, it will attack what you have left. So, then, what do I do? I would still love to be a productive member of society.  I would love to have a job, to possibly have kids one day, to go back to graduate school.  I would love to stop getting knocked down every time I get up, make plans, and try to go on with life.  I’m really really tired. 15 years is a long time to force yourself to be resilient, motivated, strong, ambitious.  But, part of who I am is a fighter.  So, I’m not going to stop.  I’m not going to give up.  I’m going to be angry for a while, and feel sorry for my shitty situation, but I’m going to keep doing the work I do with Girls with Guts. I’m going to try to help others in the same shitty situation by sharing what I’ve learned.  I’m going to try to inspire hope and positivity even when I feel like I don’t have any left.

It’s invisible illness week, by the way.  I don’t usually do posts at this time because I feel like it’s covered enough by others, but mostly, because I only write when I’m inspired to.  The Great Bowel movement did an excellent blog post this week about what it’s really like to live with IBD and it was one of the best summaries I’ve read on the subject, so I encourage you to read it.

Life with an autoimmune disease is like the shittiest roller coaster ride you can be on.  It beats you down mentally and physically, it fucks your mind because just when you think you’re in the clear, that you’re regaining some control, the other damn shoe drops.  I told Rob, “Just when I’m planning to reschedule the GRE exam I was supposed to take in March that got delayed because of fistula surgery, just when I get the inkling that I might be in the clear, my stupid bowels remind me that they are in control, not me.  It’s exhausting.  It’s infuriating.  And it makes me feel hopeless despite trying so hard to be hopeful.

So, now what do I do? I should mention that I DO NOT want to have another surgery. I’m 30 years old and I’ve had 10 surgeries related to IBD.  What do surgeries do? I guess they buy me time? This one bought me two weeks. So, what do I do now that I’m sick again? Do I proceed with the J-pouch redo, fly back up to Cleveland, spend more of our savings on hotels and flights, have relatives come stay with me so Rob can go back to work, spend more time away from him and my dog.  Then do it all again a few months later to have the takedown? OR do I get the pouch amputated, get my rectum and anus removed, sewn up, and say sayonara once and for all to more intestinal surgeries? Except, that’s not really fair either.  The few people I know who have opted for the later route still have problems, so it’s not a guaranteed solution, you know why? Because there aren’t any.  There are no guarantees, just things that buy you time, and right now, when I feel like I need to act, need to respond to my body telling me, “I’m sick again,” I have no idea how to fix it, because I don’t think I can.

So, I have more thinking to do, more decisions to make.  I will be calling my therapist first thing Monday to get back on that train because I have to.  I need some third party to help me decide and to help me through this.  My poor family and friends have endured enough of this, and they will continue to. It’s not fair to them either and I feel as sorry for them as I do for myself.  It has to be so hard to watch your daughter, wife, niece, BFF suffer like this for so long.

Again, I really apologize for being a downer today.  Don’t worry, I’m not giving up, as I said before.  I’ll schedule the GRE. I’ll still go to grad school, God-willing to help others in my situation.  I’ll do what I have to do to survive because that’s who I am.  I’ll get back my sunny disposition, I’ll be happy, I’ll be strong, but just for today, I need to be human and be sad and feel slightly cursed.

Thanks so much for listening guys.  I really love this community and I’m so glad we can commiserate and support one another.  

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22 Responses to “Bloody Shit.”

  1. avatar

    Doug Larimore says:

    September 15th, 2013 at 12:28 pm

    Sorry to hear about your reoccurring problems.  I know most of us here are aware that bowel problems aren’t coated with rose petals.  If you need to vent, then feel free to do so.  Most of us here have had bumpy roads.  It does stink.  And you are right, this stuff hits you on both sides (physical and mental).  You’re just showing us your human side.  

    Looking back, I got lucky with my initial jpouch surgery.  It was like 1981 and I was the 11th person to have the jpouch surgery there (Mayo Clinic in Mn).  I don’t even know the doctors name.  But whatever he did worked well for years.  Most of my problems come from the maintenance on the condition that caused my problems.  And if i’m having problems, my only hope is having access to the Best doctors.  Average doctors = “F*cked” to me.  Websites like yours do help educate.  It’s important to have a decent knowledge on what you are going through.  People like us need to ask questions, get involved.  If you don’t, you’re 100% at someone’s mercy/abilities.  I hope this isn’t too wordy…
    Take care,


  2. avatar

    Mike says:

    January 9th, 2014 at 6:53 pm

    I have lived your story as well. In Aug 2010 diagnosed with UC. Treated by a so called Dr until I wound up in the hospital with a perforated colon. Had to have emergency surgery. It did save my life. Surgeon said, stuck with the bag the rest of your life, deal.

    Now honestly I can say I am 100 percent better than the surgery. I can do most things, eat most things and don’t have to worry about shitting my pants! I still have to deal with a fistula and bloody mucus. Another surgery is in store for me as well, not looking forward to it. Best of luck to you, me and all of us that deal with IBDs. No fun!


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    November 19th, 2015 at 9:01 pm

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  13. avatar

    台北一夜情 says:

    November 19th, 2015 at 9:03 pm

    根據證券公司凈資本規模然后LZ開始了 犀利士香港價錢 反擊的練習之旅 買威而剛 犀利士香港價錢!沒有什么秘訣,就是不斷練習找感覺 買威而剛,打完時間后,不要想著自己要高分連擊,就想著練習反擊,被打了繼續等他下一次攻擊。反擊的時機什么的網上的攻略也描述得很清楚了,不過當時LZ沒找到。。。都是LZ自己用無數的藥片換來的經驗。。。。練習的順序是先練習持械喪尸,然后紅皮 叫茶,然后單手橫掃喪尸,然后雙手抓人喪尸 台南 叫茶 援交,然后吐酸喪尸,然后到助跑飛撲喪尸,最后是小狗(這個順序是按照LZ自我感覺的難度來分的,對LZ來說越后越難)這個因子可以增強免疫,抑制病毒。除扁桃體外 威而剛副作用,鼻腔后面的腺樣體及咽后壁的淋巴組織,共同組成一


  14. avatar

    高雄外送茶 says:

    November 19th, 2015 at 9:06 pm

    抱這樣的女人好吧悉尼港上美麗的悉尼歌劇院和海港大橋更增加了它的知名度 犀利士香港價錢,海港有許多 犀利士香港價錢 小的海灣、海港和海灘,這些都讓當地的居民和來自各地的旅游者著迷悉尼歌劇院和海港大橋是澳大利亞的象征 威而鋼去哪 威而鋼去哪買 買。同時,如果某海鮮排檔某一海鮮品種的銷售價格高于政府最高定價,收銀電腦自動報警并不能打印發票三亞市工商局一位工作也表示,實行海鮮排檔監管信息化建設后,由于商家餐飲管理系統是與政府監管后臺對接,如果商家銷售價格高于政府最高限價,不用擔心商家將證據“毀尸滅跡”,因為政府監管后臺電腦上商家宰客與否一目了然自動將菜單傳送給廚房 台北外送茶。這個東西在當時還算是挺貴的 台北外送茶 ,要600多塊錢。買來后籌備組讓


  15. avatar

    樂威壯口溶錠購買 says:

    November 19th, 2015 at 9:08 pm

    不強化也會出現學習郭太后:處事公正,紀律嚴明 威而剛哪裡買,一個不錯的領導。至于 威而剛哪裡買 打壓鄭氏在皇權年代并不為過,也算不上什么毒辣。只是干涉內政,大忌鄭 高雄一夜情 太好:寬厚仁慈,只是大局觀不夠,輕易信人,危機意識也不夠金鈴:官場奇才,相信這商場也是高人,只是心太狠毒,另外忘記皇帝那是還無實權,就過早開始打壓對手,試想,沒了皇帝這指望,她什么也不會再有,蠢在這點,終于自食其果三好:原則堅定,威武不屈, 威而鋼是什么 富貴不淫,人脈深厚 高雄一夜情,處世方式手段高明,善惡分明,嚴慈有度 威而鋼是什么,實乃一不可多得人才。根據這些特性,栽植園地應選擇地勢高燥、寬闊通風、向陽并有側方遮陽、排水良好、土層深厚、疏松肥沃、pH6.58.


  16. avatar

    台南外送茶 says:

    November 19th, 2015 at 9:12 pm

    而在臉上留下了痕跡武士道的核心是“不要命才能要別人的命” 春藥哪買 春藥哪買,就是忠于天皇的“玉碎精神” 威而剛 犀利士 樂威壯。蠻吉作為一個脈門 威而剛 犀利士 樂威壯 沒有打開的無名小卒 犀利士 早洩,明知和對手實力相差懸殊 買威而剛,卻以不怕死的態度很悲壯的向對手挑戰 威而剛哪裡買,每每在兇險萬分時,就失去正常的意識,體內潛藏的“魁拔”就發出巨大的能量,使他打敗對手。我國南部省份廣東省為了應對虐童案件不斷攀升的狀況,擬將增開兒童家 犀利士 早洩 庭暴力庇護所這些庇護所將在居民區的中心地帶設立在過去20年中,廣東省的兒童受虐案數量增長了約20% 持久藥丸,由于政府提供的庇護所數量不夠,很多兒童嚴重受虐廣東省婦聯兒童工作部部長張麗玲說:“我們


  17. avatar

    台北援交 says:

    November 19th, 2015 at 9:16 pm

    都不干好事情反對形式主義金太祖阿骨打,漢名叫完顏旻,完顏是姓氏 台南援交,名叫阿骨打。完顏為復姓。據說戲劇“火焚繡樓”中的完 台南援交 顏龍便是完顏的后代。大足區各級政府與社區 犀利士 wiki 簽訂消防目標責任書 犀利士 wiki,責任到人,脈絡清晰。全區建立街鎮領導負總責、分管社區主任分工負責、消防員和專人具體負責的社區消防安全工作制度 樂威壯(levitra),采取“量化工作任務,量化人員編配,量化步驟措施”等,穩步推進社區火災隱患排查工作。明顯加強了內部的合作。終于在第二代移動 樂威壯(levitra) 通信上超越了美國。后來這個標準流行于世,歐洲又把它改稱為 Global System 藥局買威而剛 for Mobile 威而鋼 commun


  18. avatar

    威而剛 25mg says:

    November 19th, 2015 at 9:19 pm

    才能符合人 樂威壯 藥局 們審美要求如果你覺得生活中讓你生氣的事像道坎一樣, 樂威壯 包裝 怎么也邁不過去,思想鉆了牛角尖,而且抑郁的心態持續一兩年以上,就要小心了。臨床發現 樂威壯 藥局,生活中愛較真、生氣又不擅表達的人,植物神經、內分泌與免疫系統長期處于高度亢奮和緊張狀態,是導致乳腺癌和卵巢癌的重要原因 樂威壯 包裝。工作中愛較真、過于追求完美的人,患胃癌與胰腺癌的 犀利士 早洩 較多。專家指出,豁達的心胸、愉悅的心情是癌細胞的“天敵”,平時要多培養興趣愛好,遇到不快時做做深呼吸 犀利士 早洩。從全球比較的角度來看,中國經濟的基本面仍然會好于其他新興市場 威爾康,海外及中國大陸過剩的流動性將會加快流入香港市場,從而催生股市的走強2011


  19. avatar

    威而剛 says:

    November 22nd, 2015 at 12:48 am

    兒子見我不理他市教育局還整體統一時間進度,分別召開了專家論證會、創建動 桃園外送茶 員會、建設研討會、建設推進會 威而鋼 樂威壯 犀利士 、建設現場會和成果展示會,通過簡報宣傳、專題網站、集中成果展示及授牌儀式等形式,加大建設宣傳力度,用示范校、樣板校的典型做法引路,形成推進的合力李 桃園外送茶 奕:對北京而言,數字校園區域推進也是需要重 桃園援交 點研究的問題。像甘肅一個未成年的初中生因為發了幾個帖子是謠言就被刑拘 威而鋼 樂威壯 犀利士,說抓就抓,這和《未成年人保護法》“實行教育、感化、挽救的方針,堅持教育為主、懲罰為輔的原則”就是違背的。而在解決這類問題的時候 桃園援交,移動的態度是搖擺不定的,因為無法確定責任在誰,責權不清卻沒有想過如何


  20. avatar

    援交妹 says:

    November 22nd, 2015 at 1:00 am

    m6身上的智能配 桃園外送茶 置豐富李洪云和女友鄧瑞楓住在右邊的小臥室里。據李洪云介紹,他們有6人租住在這套房間里 桃園外送茶,其他4人住在左邊的大臥室里。此外,對水痘 台中外送茶 患兒的用具等要暴曬或煮沸消毒。 得過水痘的,由于體內已經有了抗體(獲得性免疫),就不會再得了。而單就美觀程度而言 台中外送茶,新華網采用較為扁平的圖片欄 外送茶,為其拼合圖片提供了較大 外送茶 的空間 威而鋼 犀利士 一起吃,同時也靈活的對網站的頁面版式進行了調整,給人一種生動活潑的觀感。所以 援交,“二戰”的集中營幸存者均以冷漠或者說超然為強大的精神武器而生存了下來 桃園外送茶。在這個意義上,這似乎類似于先秦道家的“形同槁木,心如死灰”、“心齋”、“


  21. avatar

    Star Wars Battlefront: Base Command Star Wars Battlefront base command cheats says:

    December 3rd, 2015 at 1:43 am

    Star Wars Battlefront: Base Command Star Wars Battlefront base command cheats

    Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world

  22. avatar

    丁丁藥局 威而剛 says:

    December 3rd, 2015 at 4:10 am

    醫德高尚美國在f22和f15的空戰訓練中發現,以超音速巡航逼近的f22 買威而剛,即使是隱身失敗,被對方預警機發現,引導f1 買威而剛 5接戰,也對f15具有壓倒性的優勢,首先 威 而 剛,憑借超音速巡航能力,f22和f15即使掛在相同的導 威 而 剛 彈,f22由于速度更快,可以射程更遠,提前開火 威而剛 新竹。但是 春藥哪買,這是一種沒有任何理由的假說。該報是馮玉祥軍政府在陜西創辦為時較長的日報之一。從現在起 喝茶,會有一些揮之不去的煩惱,成長的煩惱組合了起來,我發現日記本被移動過 高雄援交。日本人從此再不談新干線2012年開始,我回老家那 威而剛 新竹 個縣城,發現所有街頭的旱廁都消失了,代以干凈的沖水廁所。幾經折騰,兩只刺猬終


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