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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Repeat offender: third abscess in 4 months!



02-12-2012, 04:48 PM   #1
TeacherMama
 
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Repeat offender: third abscess in 4 months!

Hi there

I'm looking for advice today. I'm back in the hospital with another abscess on my psoas muscle. I was just here three weeks ago! And this is my third abscess since October. I can't even get better fast enough to try Remicade (still waiting for insurance to give the green light).

Surgeon wants to remove a section of small intestine, part of colon and something that begins with a c...celiv? (I was drugged up when she told me.) And then start Remicade and 6 MP. I'm frustrated. I want my life back.....but I don't know if this is the best option.

Thoughts? Experiences?

Thanks so much

TM!
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02-12-2012, 05:10 PM   #2
DustyKat
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Have sent a PM.

The surgery you would be having is a right hemicolectomy, they will remove the affected terminal ileum, the ileocaecal valve, the caecum and a small amount of the large bowel.

When there is disease in the last part of the terminal you can't resect the area without removing the valve and the caecum as it is impossible to marry to the ends of bowel due to the difference in size.

Research suggests that the biologics have very little success with fistula's originating in the ileum and therefore surgery is the most viable option.

Both of my children have had wonderful outcomes from surgery needed for the same reason that you now find yourself in.

Good luck!

Dusty.
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02-12-2012, 05:19 PM   #3
tiloah
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I can't tell you if this is the best option for you, but I can tell you I think it's a great option for a lot of people. I had a horrible abscess in that area that couldn't be treated except with surgery and I am so glad I did it.
02-12-2012, 05:35 PM   #4
TeacherMama
 
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How long ago did you have it? What was your recovery like?
02-12-2012, 05:36 PM   #5
TeacherMama
 
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I just saw that you are in Washington! I'm assuming you mean state, and not DC. I'm in Seattle at Northwest Hospital.
02-12-2012, 08:59 PM   #6
tiloah
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Hi TM, yes Washington State.

I should clarify that I had a right hemicolectomy. My terminal ileum and other bits were removed. In all, 7" of my colon was taken out. My psoas muscle was not involved that I know of.

My surgery was eight months ago now. The recovery really wasn't that bad. Actually if you click the link in my sig, I wrote about the whole thing in pretty excruciating detail. I was in considerably more pain before my surgery than pretty much any point after. The biggest problem I had was coming off the Pred, which made me incredibly dizzy.
02-13-2012, 12:53 AM   #7
DustyKat
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Sarah:
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased.

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips.

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once.

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

Over time she moved to a vegetarian diet and has now been vegan for about 18 months. The most recent change she has made to her diet is to cut out most sugar. She has stated that these changes to her diet have made given her a greater feeling of "wellness" and leaves her more energised.

Matt:
had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery.

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair.

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation.

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left.

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it.

They have both been on maintenance meds (Imuran) following surgery.

Dusty. xxx
02-13-2012, 07:40 PM   #8
TeacherMama
 
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Thanks, Dusty. Your family has been through so much. I appreciate the experiences you are sharing. It helps so much!

And that was my follow up question: What maintenance drugs were people put on post-surgery? They are talking Remicade and 6 MP. Most GIs I talk to say I will be on them long term. I hate that idea. Someone please tell me that isn't the case.

Ugh. Can't shake the infection right now...got my drain put in yesterday and had horrible fevers and nausea yesterday and today. I hope this clears up soon. I'm also dropping more weight...not good. I'm already too thin.
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