Newly diagnosed - surgery already

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Sep 5, 2012
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Hi

I have been having problems for 12-18 months and eventually went to the docs, thankfully have private health though work. It has been a bit of a whirlwind of tests and trying to stay sane. Apparently i could have had this for years and not known about it. I have had tablets and now have been told I probably need 50cm of small intestine taken away.

Is there anyone out there that has had this done? I would appreciate any pointers I can get.

Warge
 
hi warge,

i was the same as you about 6 years ago,i was ok one minute then slowly i started to feel unwell then bang,it progressed rapidly,started to loose weight rapidly,wouldnt eat for days,lived mainly on fizzy juice and lucozade for the sugar rush,

eventually i was diagnosed with crohns,was put on pred steriods,asacol tablets and things got better,but couple of months later i was taken to see surgeon and within a week i was in hospital for bowel surgery,was meant to be keyhole surgery but when thye had a proper look i had to diff sections that needed removed,i had a fistula from my bowel to bladder so would pass small bits of food in my pee,so i woke up in pain thinking "bloody hell if this was keyhole surgery i'd hate to feel the pain from being opened up" sure enough i looked under my gown and there was the staples down my gut from belly button to groin,i was in hospital for a week and at first was very sore and the nurses forced me to get up and walk around as if i'd lay about my stomach muscles would have mended tighter so i had to walk and straighten up which hurt like hell but eventually it got easier,
i got home and 2 days later i stopped taking any pain meds and started to get back into a kind of normal routine,through time i healed well and was back to normal so it will take time but you just need to take it easy and not rush anything or you could do more damage that good,
hope this helps you mate and quick recovery

craig
 
Thank you for your replies. It is reassuring to know people out there that are going through the same thing as me. I am having to have 50cms of small intestine taken away because it is badly scarred and inflamed and I could end up with a blockage as I keep being sick and have reflux (which I have never suffered from in my life before) I would rather have it now under some sort of control than end up in A & E and it be worse. I just keep thinking that 50cms is rather a lot to take away and have been told i will be on vit b shots and supplements for the rest of my life. Still rather that than have a bag. Luckily i have private health with work and can choose when to have it, so I get my holidays before it is done:) So will probably be around second week in November I guess I may be off work at Xmas :)

It could be that I have had this disease years and not known about it:-( I have suffered from the symptoms off and on for years but not all the time only a couple of days at a time then long time without.
 
Things were very similar for me - i was just diagnosed in July after 2 months of symtoms, then after being hospitalized twice for an abscess, I'm getting surgery next week. They're cutting part of my bowel, but they don't know how much. And I have a fistula from bowels to stomach surface that formed after abscess drain, and some bowel parts sticking to my bladder? All very sudden, never got a chance to get on the heavy duty Crohn's meds, and I'm searching as much as possible to find out how my recovery from surgery will be.
 
Hi warge :welcome:

Wow, that did come hard and fast ay? Both of my children have had the surgery you are facing. You are right to have scheduled it whilst you have control over the situation, your outcomes will be far more predictable and you will have a greater chance of having the surgery performed laparoscopically which will reduce your recovery time.

Long story short: My daughter was diagnosed on the operating table during emergency surgery. She had a right hemicolectomy (ileocecectomy) and 68 cms of bowel removed. My son had planned surgery following a very quick diagnosis but then suffered complication after complication much like the complications you have bbisceglia :)welcome: also!). He also had a right hemicolectomy and 28cm of bowel removed. They both had open surgery, my daughter due to its urgent nature and my son because of his complications. Neither had bowel prep prior to surgery.

This is an outline of their recovery whilst in hospital and the recovery time once home:

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.

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.

Sarah's surgery was in July 2006 and Matt's in April 2011. Have a look at this thread and it will give you an idea of what other's surgery experiences have been.

Good luck to you both!

Dusty. xxx
 
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