J-pouch Life » Abby http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 H-O-P-E! http://www.jpouch.net/2009/09/25/h-o-p-e/ http://www.jpouch.net/2009/09/25/h-o-p-e/#comments Fri, 25 Sep 2009 20:17:06 +0000 Abby http://www.jpouch.net/2009/09/25/h-o-p-e/ It’s been some time since I posted an update here. Exciting things are beginning to happen for me. In just a few weeks we will be coming up on the year anniversary of the creation of my j-pouch. After my takdown surgery in December, I had been having to have dilations on a pretty regular basis due to scar tissue forming around the opening to my pouch, but guess what? The dilations are no longer needed (after a total of 11 I think)! While I still have to do enemas to treat the UC that remains in the small part of my rectum that is left, the enemas seem to be doing their magic. I also have to take Cipro on a daily basis to treat chronic pouchitis. These things are all totally do-able for me. I feel like life is “normal” again!

As you may recall if you read my story in the past I was diagnosed with a severe case of UC (toxic mega colon) in 2008 when I became pregnant. During my lengthy hospitalization, we lost our daughter and I gave still-birth to her at five months along. Just a couple of weeks later my colon was removed. The most challenging time in my life, no doubt. But here’s where it gets good folks! I have been healing. I feel good, and my husband and I have started the adoption process! After weighing the pros and cons of getting pregnant, we decided that adoption fit us better. (Plus, I can’t go off the Cipro without getting sick, and you can’t be pregnant on it – though there may be other options, we didn’t explore them.)

While I know patience is a virtue I will be embracing as we go through the adoption process, I get so excited sometimes I can hardly stand it! I cant’ tell you how wonderful it is to feel HOPE about the future again! xSC02761

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]]> http://www.jpouch.net/2009/09/25/h-o-p-e/feed/ 9 Grassroots Conference http://www.jpouch.net/2009/05/17/grassroots-conference/ http://www.jpouch.net/2009/05/17/grassroots-conference/#comments Sun, 17 May 2009 16:38:10 +0000 Abby http://www.jpouch.net/2009/05/17/grassroots-conference/ tucson

Saguaro National Park in Tucson Arizona. A truly magical place! Image by Leto A.

Hello everyone! I am a firm believer in grassroots movements. As such, I am feeling a strong desire to put together a conference for J-pouchers. I live in Tucson, AZ and believe we have some great resources for J-Pouchers with the University of Arizona here. Anyway, what I am asking for is some honest feedback and input from as many people as possible about holding such a conference. I have a personal website: www.MusingsAndNotions.com where I have a page dedicated to obtaining information from J-Pouchers and Ostomates on the possibility of such a conference. If you would please take a moment to look at the page and give me your feedback and comments, it would be greatly appreciated.
Abby Cashman

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]]> http://www.jpouch.net/2009/05/17/grassroots-conference/feed/ 3 Abby’s Update: Cryptitis and a Defocography Study http://www.jpouch.net/2009/03/03/abbys-update-cryptitis-and-a-defocography-study/ http://www.jpouch.net/2009/03/03/abbys-update-cryptitis-and-a-defocography-study/#comments Tue, 03 Mar 2009 17:40:57 +0000 Abby http://www.jpouch.net/2009/03/03/abbys-update-cryptitis-and-a-defocography-study/ Here’s the latest for me: We had ended my weekly dilations on February 13th, but the following week things got bad for me again. I have these symptoms that my surgeon is having a hard time figuring out. 1) I can’t control my straining when I have BM’s and my body does this type of heaving thing – very painful; 2) I have pain in my lower abdomen near my pelvic bone; 3) When I have BM’s they burn; 4) I run a low-grade temp (99.5-100); 5) The frequency of my BM’s increases; and 6) My joints in my hands and feet ache. (I think my UC is flaring in my rectum, together with some nerve problems with my pouch – we’ll see . . . )

So on February 20th my surgeon did a biopsy of my rectum and of my j-pouch and dilated the opening to my pouch one more time (for good measure because she was already in there). She also started me on a five day course of Cipro (which I ALWAYS feel better when I take Cipro, which I think is sort of telling about what’s going on). I did feel better until just a few days after I stopped the Cipro and then the symptoms began again.

The results of the biopsy showed that I do not have pouchitis, but that I do have cryptisis in my rectum. I don’t know much about cryptitis at all. My surgeon told me to start doing the nightly mesalamine enemas again, so I am. I’m going to see her for a follow-up appointment tomorrow (the 4th – my birthday!). The only difference I’m noticing with the nightly enemas is that my joints don’t hurt any more at night, which is a good thing. The rest of the symptoms are still there (though the fever thing hasn’t been an issue lately).

I am also scheduled to have a defocography study done on March 27th because my surgeon believes there may be some nerve damage or something in my pouch. Has anyone had a defocography study done before? Apparently they put barium in me and then take x-rays of me while I’m having a bowel movement. I’ll let you know how that goes and what it’s like. I believe my surgeon said that if there is nerve damage that is causing the pain and problems when I have BM’s, that she would need to go in and revise my j-pouch. That would mean a temporary ileostomy for me for a while until the revisions healed. She said there would also be a possibility that the pouch revisions wouldn’t work and I would end up with a permanent ileostomy.

Emotionally I’m hanging in there. The pain is pretty tough to deal with on a daily basis. Depression has reared its ugly head once again for me. So I’ve started seeing a psychiatrist on a weekly basis for meds and counseling, which has been incredibly helpful to me. I’m still hopeful that j-pouch life will work for me! There are just more issues to sort through than I anticipated. Time can’t go by fast enough when you’re trying to find answers either! (Although tomorrow I turn 34, so I’m actually hoping time will slow down just a little bit for me!)

-Abby

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]]> http://www.jpouch.net/2009/03/03/abbys-update-cryptitis-and-a-defocography-study/feed/ 7 Abby’s Hot Air Abdomen http://www.jpouch.net/2009/01/30/abbys-hot-air-abdomen/ http://www.jpouch.net/2009/01/30/abbys-hot-air-abdomen/#comments Fri, 30 Jan 2009 23:36:41 +0000 Abby http://www.jpouch.net/2009/01/30/abbys-hot-air-abdomen/ tn_1_06_ha3_010a
I went in for my third outpatient dilation and pouchoscopy this morning. (I had an additional one done in my doctor’s office without meds – not fun!) I think I have the drill down now. Everyone in the clinic knew my name and greeted me. I filled out the same paper work (for the third time!), went back to the prep area, changed into the beautiful hospital gown, got my warm blanket and waited. The nurse poked me in the arm and hooked up my IV (left a bruise today).
I still got a little nervous as I laid on the table in the exam room just before the procedure began. Then when the drugs kicked in I relaxed. My memory gets a little foggy, but I remember telling my doctor a couple of times in a bit of a panicked voice, “Oh, that hurts!” She was so kind though and encouraged me and told me everything she was doing. For some reason today I had a LOT more gas when I got home. It was like a hot air balloon was in my stomach. After attempting to let it all out, I crashed on the couch and slept for FOUR hours!!
My doctor told me the hole to my pouch had constricted and closed up (not totally) again since last week. I knew that. I could tell. Last night and the night before when I went to the bathroom I had to strain so much to have a BM that my obliques were aching, even after I was done in the bathroom. But I felt some improvement during the week. So I’m just going to keep on hoping that this works.

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]]> http://www.jpouch.net/2009/01/30/abbys-hot-air-abdomen/feed/ 8 Abby’s Update http://www.jpouch.net/2009/01/26/abbys-update/ http://www.jpouch.net/2009/01/26/abbys-update/#comments Tue, 27 Jan 2009 03:40:58 +0000 Abby http://www.jpouch.net/2009/01/26/abbys-update/ So for those of you who read my first blog entry on this website, here’s my update.

On Friday, January 16, 2009 I went in for a pouchoscopy to see what was up with me having such difficulty having bowel movements. I had to push so hard to go to the bathroom that I felt nauseous for like an hour afterward. There was also some blood in my stool. My doctor wanted to do the pouchoscopy to see if either the opening to my pouch wasn’t dilating, or if I had already developed pouchitis.

I didn’t have to do any prep for the pouchoscopy. They had me change into a hospital gown, hooked up some heart monitors, and started an IV. They wheeled me into the procedure room and started the good drugs. It felt like a half a bottle of wine hit me in just a few seconds. I was with it enough to see what was going on on the screen. The opening to my pouch wasn’t dilating. My doctor was able to dilate it during the procedure. I didn’t really feel anything (that I remember anyway).

I went home after the procedure and took about a three hour nap. That day I was able to have bowel movements without much trouble, but then the weekend came and things got rough again – but not as rough as they had been before. I called my doctor on Monday and told her my status. She had me come in again on Wednesday to check me out.

At my appointment on Wednesday the 21st she did a rectal exam in the office (bend over, here’s the lubrication, fingers in, pushing around – ouch!). She said that because I still have my rectum and 5 cm of mucosa lining, the opening to my pouch is too high up for me to learn how to do self-dilations. She said she read that 50-60% of people who have problems with the opening to their J-Pouch dilating will eventually be able to dilate after repeated dilations and can therefore avoid surgery to revise the j-pouch. Because it hurt too much to do in her office without drugs, we are now scheduling weekly out-patient dilations at the hospital. I’m fine with that. She sounded like she’s willing to do this for months to see if it works and we can avoid surgery. Surgery would in the very least mean another temporary ileostomy and in the worst case would mean a permanent ileostomy if the integrity of the pouch couldn’t be kept during the surgery.

So for now I’m going to the hospital every Friday morning to be scoped and dilated. Thank God for the good drugs!!

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]]> http://www.jpouch.net/2009/01/26/abbys-update/feed/ 3 Abby’s Story http://www.jpouch.net/2009/01/18/abbys-story/ http://www.jpouch.net/2009/01/18/abbys-story/#comments Sun, 18 Jan 2009 22:16:26 +0000 Abby http://www.jpouch.net/2009/01/18/abbys-story/ dsc020931

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.  Read the rest of my story click here: Abby’s full story .

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