Abby’s Story

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The photo is of our dog Django and went with me in 8x10 format and hung on my hospital wall thanks to my husband!

My name is Abby. I’m 33 years old. In March of 2008 I was four months pregnant with my first baby and ended up in the hospital because I was having bloody diarrhea close to twenty times a day. No one knew what was going on. After five days of being in the hospital and all kinds of tests coming back negative my OB called in the GI doc to check me out. He met with me and talked to me about my symptoms. He told me my situation could be “life or death.” He talked to me about ulcerative colitis and toxic mega colon. I had never heard of these things before. I’m an educated woman, but I’m embarrassed to say I didn’t even know that my colon was the same thing as my large intestine.

My mom told me at that time that when she was my age she had been diagnosed with colitis, treated for it, and never had any problems with it again. My GI doc said that what probably happened was that I had a genetic predisposition to UC and the changes in my immune system as a result of my pregnancy brought on this full blown flare. More tests were done – tests that put my baby at risk. I was put on steroids and was told that they would be safe for my baby. Not long after the first round of treatment my doctor told me my nutrifill (sp?) numbers showed that I was steroid resistant. He said because I was pregnant my treatment options were limited. There weren’t many hospitals in the country that would take me to treat me. Fortunately for me, there was a hospital in the city in which I live (an excellent hospital) that would take me and treated me with cyclosporine and steroids. Within just a few weeks I put on 100 pounds of fluid while I was hospitalized. I was told I couldn’t eat and was put on TPN to nourish my baby and me. My weight gain caused me to go into a diabetic state and caused my blood pressure to raise so I was getting shots to keep it controlled.

At five months pregnant my husband and I lost our baby girl – Harper Lee. A few days after giving still birth to her (April 22, 2008), the number of bowel movements decreased to a safe enough level for me to be discharged home after about four weeks in the hospital. 

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After being home for five days, I ended up back in the emergency room. My bowel movements had turned to water and I was passing huge blood clots. They tried me on another round of IV steroids again, which got me to an acceptable level of BM’s per day, but even on the highest dosage of oral steroids I couldn’t maintain. After another two weeks in the hospital my treatment team agreed my colon needed to be removed. On May 8, 2008 my colon was removed. My surgeon gave me pictures of it. I couldn’t believe it. It looked like a pile of ground beef. My GI doc told me my case was one in a million. My surgeon said it looked like I had the disease for ten years. He couldn’t believe I had just been diagnosed two months earlier.

I did pretty well with my ileostomy at that time. Pretty well being my bag didn’t leak on me and I stayed hydrated. I could go three to four days in between bag changes. Emotionally I had a tough time with it though. Everyone kept telling me my life SHOULD be the same as it was before. But it wasn’t. More than half my wardrobe was not conducive to hiding the bag. I just wasn’t confident that I could go running with the bag so I never tried. And yoga – I felt certain there was no way I could do yoga with a bag that filled up all the time. Plus – how could I lay on my stomach? It just didn’t seem possible. But I was determined to live as best as I could. I still had the hope that I would get reconnected. That’s what kept me going.

Finally, on October 17, 2008 I had my j-pouch surgery. My surgeon said it went well. He was concerned about me staying hydrated because this new stoma was up higher in my small intestine, so I had a PIC line and my husband helped me with IV fluids every night. I did end up getting an infection in my PIC line (together with a UTI at the same time) and was hospitalized for a few days while they changed the PIC line to my other arm. At this point though, a few days hospitalization compared to a month or two was nothing!!

This second ileostomy was much harder for me to deal with. My bag would start filling up WHILE I was eating sometimes. Food went right through me. I totally lost my appetite. I was losing weight and I wasn’t happy about it (I never thought I would see that day!). This stoma was smaller than my first, which meant it was harder for me to get my bag to seal around the edge. My husband and I consulted with my AWESOME ostomy nurse on a regular basis about getting a good seal. Soon leaks were happening every day. Then my skin started getting irritated and infected. It was so painful. It reached a point where I was literally moaning and writhing in pain when my bag would leak. I couldn’t get a good seal and had to change my bag four to five times a day (one change of clothes at work wasn’t cutting it). I ended up back in the emergency room due to the infection that was around my stoma. That was two months after my j-pouch surgery. My surgeon did
the barium x-ray and said that my pouch looked like it had healed well enough to go ahead with my take down. She would have wanted to wait another month, but because of the infection problems I was having and because my pouch had healed so well, she was willing to move forward. One issue she was concerned about was the the hole to my j-pouch wouldn’t dilate enough to get a scope in there when she did my pouchoscopy. She said that if she could get it to dilate while I was under before my surgery, she would be able to do the take down. Otherwise she would have to revise the j-pouch instead of do the take down.

On December 18, 2008 I went in for the surgery not knowing what the outcome was going to be. When I came to, I found that I no longer had an ileostomy. The hole had dilated and she was able to do the take down.
Just a few days after my surgery I started having some serious problems having bowel movements – regardless of if they were liquid or solid. I had to push so hard to go it made me seriously nauseous. I told all of my doctors about this, but they told me it was just my body figuring out how to do this bowel movement thing again. Okay. I wanted to believe that everything was normal. But still, it just didn’t seem right to me.

Finally, after I became just too exhausted to deal with it any more, I pled with my surgeon to figure out what was going on. On Friday, January 16, 2009 she did a pouchoscopy and found out that the opening to my j-pouch was not dilating as it should be. I was having BM’s through an opening the size of a straw. That’s why all the pain. She dilated the hole and said that this means I will probably have to have surgery again to have my j-pouch revised. She told me too that she could not guarantee going into the revision surgery that it would work. I might come out of the surgery with a permanent ileostomy. I might come out of it with a temporary one.

And here I am now, just a few days after the dilation and I’m having problems again. I know that means another surgery is ahead of me. I’m bracing myself. I will say though, at this point I know the whole post-surgery cycle I go through both emotionally and physically. I ran the Chicago Marathon in 2005 with my brother. I think the experiences are very similar. I’m glad I have the marathon under my belt to draw on that experience as I go through this. Similarities: the mental part is far more challenging for me than the physical part; mile 24, even though you know the finish line is not that far off, is harder than mile 2.

I’ve also learned so much about how I see myself – triumphant survivor, or defeated loser (or a mix of the two)? I’ve learned that I MUST look to others to support and encourage me. But the greatest lesson I’ve learned is that how I fair in the “end” with all of this is my CHOICE. I can feel sorry for myself (and I do sometimes, okay, a lot of the time), or I can be an inspiration. I’m trying so hard to be an inspiration. I have written a memoir that I am looking to have published about this whole experience. Writing is giving me meaning and hopefully will help others deal with their challenges, grief and loss. I have a blog, http://www.WholeHeartAndSoul.blogspot.com where I’m chronicling my journey of healing on a daily basis as well.

So that’s my “story” to date. I will keep you updated. I wish peace and HEALTH to all you readers!
Abby

The photo is of our dog Django and went with me in 8×10 format and hung on my hospital wall thanks to my husband!
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15 Responses to “Abby’s Story”

  1. avatar

    Aunt Tassie says:

    January 19th, 2009 at 12:50 pm

    You ARE an inspiration, Abby. Keep writing — you’ve got an incredible story that you tell in incredible ways – candor, humor, empathy, triumph!

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  2. avatar

    skye says:

    February 15th, 2009 at 2:22 am

    thankyou for sharing your story. i am a 20 year old crohns sufferer and found your story comforting.

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  3. avatar

    trish says:

    March 5th, 2009 at 7:17 pm

    You are amazing. I both sympathize and commend you for your strength. I am 34 and was diagnosed with UC 14 years ago, after the birth of my first son. I’ve had mild relapses but had maintained a decent life until the fall of 2007. By July of 2008 I went from 13cm of disease in my rectum/lower colon to having my entire colon inflammed…Docs said mine looked like “ground beef” too. I spent 5 weeks in the hospital on TPN. I’ve tried every drug possible (Remicaid, Sulfa drugs, mesalamines, 6-mp) and have had allergic reactions to everything (or they just won’t work)…I am injecting myself with methotrexate now and I am on high dose steroids which make me feel completely insane. I have my second consultation next week with a surgeon. Going to go through surgery in May. I hope this gives me my life back. My thoughts are with you in your battle to regain your life.

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    Debbie Aiello Reply:

    I read your story and wondering how your surgery went, mine will be next month. Hope your ok, look forward to your response.

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    Jill True says:

    June 4th, 2010 at 4:56 pm

    Hi Abby! I want to thank you for your story and tell you how sorry I am for your loss. I too was diagnosed with ulcerative colitis while pregnant (back in 2000). I was about 6 months pregnant and began having 20+ bowel movements per day. I ended up delivering my first child prematurely – but luckily she was healthy enough to go home shortly after I did. Throughout the next 8 1/2 years I went through periods of flare ups and remissions though the flare ups were somewhat mild which only required doses of prednisone to put me back into remission. I even went through a 2nd pregnancy without any issues at all. I remained in remission the entire time! However, come spring/summer of 09 I began with the worst flare up I had ever had. I was having bloody diarrhea 20 – 30 xs per day and would lay on the bathroom floor crying in agony. I felt like I was dying. I was hospitilized and went thru high doses of steroids and remicaide – with no avail. I ended up septic in October and had to have a total colectomy. I too wanted the jpouch procedure – since I was only 27 years old – and did not want to live the rest of my life with a bag on my hip. I have 2 girls that are very active at 4 and 8 years old and don’t want anything to get in the way of spending time with them. In October I had the total colectomy and came out with a temp ileostomy. I was in and out of the hospital a total of about 8 weeks…..I too went thru picc line infections, utis, and developed a rather large presacral abscess that required me to do iv antibiotics and tpn at my home for several months. In January I learned that my jpouch that was created had a hole in it and would need to be revised. My abscess cleared up and I was set for surgery to revise the pouch. However, I just learned that I have since developed another abscess (which causes me horrible groin and back pain along with severe nausea and vomitting) that will require a drain to be placed through my butt cheek for 6 weeks before they can do the revision. This means I still have 2 surgeries ahead of me – the revision and 3 months later the take down. I’m starting to question whether or not a takedown is my best option. I feel I have been through hell and want it to end as soon as possible. I can live with a permanent ileostomy as long as I can get my quality of life back. Just curious what your thoughts are on my situation. Thanks so much.

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  5. avatar

    PSA says:

    June 8th, 2010 at 3:05 am

    Hi Abby

    Hope you are feeling much better now. Infact, your story brings back memories of my own suffering. I had exactly same problems, as you faced. Yesterday I had some kind of blockage. I had my first surgery in Nov 2005 and take down in March 2006. From that time onwards there have been complications. Still I feel I am much better than many others. Well take care and God Bless. Don’t loose hope and don’t loose patience.
    PSA

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  6. avatar

    Jon says:

    November 1st, 2011 at 10:28 am

    I know it has been awhile since the last comment, but I want to give an update for anyone who happens to come across this diary.  Abby required further surgery in early 2011, and unfortunately passed away due to complictions following the procedure.

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    Pramod (India) Reply:

    I am so sorry to hear about Abby’s demise. Infact she was very courageous and an inspiration for others. May her sour RIP. Her story is so much like mine. I have all those problems which she faced, but somehow managed to pull through. She, it seems was not lucky enough. RIP Abby.

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    Seattle Molly Reply:

    I just read Abby’s “Whole Heart and Soul” blog, and all of her entries here. There are no words to express how sorry I am she passed away due to complications following her surgery. It was clear from her writing she had a husband who loved and cared for her very much, and I am sorry I can not express my sympathy to him and her family. I am grateful to Jon for posting the update to her diary. Thank you. May Abby rest in peace.

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    Pramod Saigal (India) (PSA) Reply:

    It’s so said. It sends shivers down my spine. Abby was such a strong willed person. I can feel the pain as if someone very dear to me has passed away. RIP Abby – I am surely going to miss you all my life.

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    peter says:

    December 12th, 2014 at 6:54 am

    Jon-
    so sorry to hear about Amy. She was a trooper no doubt and was up against a formidable foe. I too have had UC and now have a J pouch with relatively few problems.
    I am going for a dilation due to a stricture. I see this as a fairly minor procedure.
    I am just curious as to whether this procedure had anything to do with Amy’s passing away.
    I know she had multiple challenges. Any input much appreciated.
    Peter

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