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Crohn's Disease Forum » Your Story » Lurker finally joined...at wits end


04-20-2014, 05:48 PM   #1
jamesd
 
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Location: Kissimmee, Florida

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Lurker finally joined...at wits end

Greetings.... guess my name :^)

My condition probably started in 2000 when I had an emergency appendectomy 2 weeks after a car accident. The surgeon told me the beef jerky he removed look like it ruptured 10 to 12 days prior to surgery and the baby fat around my belly (i was 18) saved my life.

Dx with CD in 2006. Managed mostly by diet until last year when I had a flare up that started about this same time 2013. A CT was performed in June and we found a fistula. I was two ferred to the colorectal surgeon in my area who pushed me to biologic treatment to close than opt surgery right away. The GI team i was working with had such a hard time booking appointment it took until late June to get back. I was given cipro/flagyl and told to check back in a month. two weeks later I was in the emergency room. Another CT and the doc said I had an abscess. surgeon said to PC drain it so 12 hours later I experienced the most intense pain in my life (did i mention i am allergic to narcotics?). 5 days later I was released to follow up with surgeon in a week for drain removal. First week of august and i am scheduled for surgery because the infection remained. I had my ileocecectomy performed august 2013. A few days later i was diacharged and felt like a million bucks. All was great until thanksgiving.

I had a small leafy salad...next day I was swollen in the LRQ and in pain. It went away the next day but I made an appointment with GI and PCP. GI immediately wanted a colonoscopy, PCP told me stop eating like a rabbit and choose the lighter, more water based lettuce. I was OK until the scope on 12/24. The GI took a biopsy of my anastomosis.
04-20-2014, 06:07 PM   #2
jamesd
 
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Didn't want to go over character limit so...

30 day (week early) follow up of scope shows no problems per GI, but my side and LRQ has been sore for 3 weeks, biopsy showed inactive crohn's colitis. I was given a script for librax, cipro, flagyl, and imuran. Couple days later i visited the ER for pain, CT done, nothing bad so sent home. 2 days after I saw the PCP for fever and pain (gi told me 3 weeks) and I was admitted to hospital. A different GI saw me and gave me prednisone injection. Few hours later, pain was gone and I left a rather large sample for analysis. I was discharged on prednisone and C/F for 10 days. 7 day follow up with GI and I told him pain was coming back from latest drop in dose. Was told to watch and report to ER if fever at 102. 3 days later, I was back in ER for pain and swelling in LRQ. Prednisone shot reduced swelling and a CT was done. Abscess found in my rectus abdominis. That was PC drain next day (4 times more painful than before). F/u ct done 6 days later and a 2nd abscess was located at the anastomosis (hidden by swelling). PC of that one too. Discharged 5 days later with 7 day follow up and a home health nurse. Released back to work for march 3 (with 2 drains). March 10, lower drain was leaking bowel content at every BM. Back to the ER.

ct showed a fistula between both abscesses. Infectious disease docs were called in to isolate the bacteria causing recurrence. Vancomycin treatment for 10 days and TPN to build of my levels. Another colonoscopy to see if I had an obstruction, and I was booked for surgery a few days later. The original anastomosis was redone and she found an adhesion of small bowel to ascending colon that she took down and patched up in hopes of preventing a future problem. All else looked good from what was seen on camera. All good right?

No....
04-20-2014, 06:20 PM   #3
jamesd
 
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Woke up with an NG tube 2 days later, my wife said they kept me out all night and next day because I was in discomfort. That day with NG was worst feeling of choking and dry throat ever. I managed to sneeze half of it out that night during a BM so it was pulled. 4 days of agonizing evacuation and I was given a liquid diet. I couldn't stomach water.... no vomiting but nausea and complete lack of appetite. I was given soft diet and tpn was reduced next day. Didn't eat much but ate a little. Drain removal for abscesses was worse than insertion and the surgical drain removal felt like I was a bull at a rodeo with a rope in a bad place. Surgeon pulled staples 7 days later and cleared for work following week. I asked for 2...good thing.

4/4, I went to the ER with a 102.6 fever and a lump behind where one of the abscess drains was. Walked into the ER and the drain wound burst pus on the floor. Fever 97.5. Kept over weekend with it still draining and released Sunday based on 2 negative CT. Saw surgeon few days later who tried to open hole a little more to encourage draining. Still flows same amount so another CT a few days later... shows no defined abscess, a possible collection of fluid too small to drain and edema in the rectus abdominis.

so here I am today. Cleared for work in 10 days when I can't walk to mailbox and back without feeling like I am going to pass out. Fever would last 3 days and go away for 3, mostly at night or if I go out in public. I have an open source that is actively draining pus and am doing blood work for remicade tomorrow.

I also take pentasa. I swear I see the pellets in the discharge but no fistula or leak identified on any CT for last 3 weeks. I feel like garbage and can't keep steady on my 30 day prescription of cipro/flagyl nor can I eat without discomfort.

Mods feel free to merge, my phone was giving me crap with posts too large
04-20-2014, 06:53 PM   #4
DJW
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Hi Jamesd. Welcome. You have been through the ringer. It can feel hopeless when you're this sick. I hope the remicade turns things around for you. Hang in there.
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04-20-2014, 07:09 PM   #5
jamesd
 
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Yeah bud. My emotional state is beyond destroyed right now (lost my brother to cancer in February 30 days after cancer dx) and this just makes it worse.

have a few follow ups this week. I think I am going to push for another test. I have a feeling a post op abscess or fistula is lurking behind the swollen muscle again.
04-20-2014, 10:21 PM   #6
Tuff
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Hi James and welcome to the forum. I'm sorry you're having such a horrible time. Abscesses are just painful beyond belief. I hope the Remicade works for you. I may have to go on it myself soon. I'm having recurring fistulas that usually stop draining after a month. Mine showed up on a MRI. Hang in there, it gets better, it may take a while for the meds to kick in though.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
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