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12-02-2012, 03:31 PM   #1
QueenGothel
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Rowan's Journey with UC

This is her medical Journey, through the course of her treatment we did try Natural Holistic Tumeric, Fish oil, Aloe Vera, super Clorophyll Powders, pH Diet, Gluten Free, Nutritional Shakes. I also went to a Holistic Guy whom was highly recommended we did a Electro Dermal screening, we tried a Hanna Kroeger Protozoan Tinctature for a month and nothing helped.

Rowan was diagnosed with UC at age 3 on Oct 14th 2011. Her symptom was bloody bowel movements which started in September. She had a bad prep for her colonoscopy but it was apparent she did have UC. They put her on Predisone and Asacol. She had to learn how to swallow pills quickly. After one month we were weening the pred and once she was down to her last dose the bleeding started again. We then tried Canasa and Sulfasalazine which made her bleed terribly. She was having the rare side effect of rectal bleeding caused by the 5asa's. she was admitted on two different flares before her final flare. In January of 2012 we were back in the hospital 23 days after 3 blood transfusions and no real answers we opted for a second opinion and she was transferred to a University Hospital via ambulance for an elevated level of care. She was on 40mg of IV steroids and it wasn't helping. We were told it we had two choices. We could take her in a get her colon removed or we could try the Remicade. Out of fear of surgery bc she was very malnurished and sickly we opted for the Remicade. It slowed the bleeding but never put her into remission even with back to back doses. After her third dose the bleeding started getting bad again right away and she needed her 5th blood transfusion. We were due for her infusion but the GIs felt it just wasn't working well enough and referred us to pediatric surgeon. She then was only on Predisone 20 mg daily and still bleeding. A week before her surgery she needed a 6th and final blood transfusion. She had her proctocolectomy and ileo-anal surgery (with mucosectomy) it was a very long 6 hours. She did really well and the surgeon had someone calling me every hour to give me updates.

Once she was out of surgery she was very tired. The next morning when I arrived I was completely shock she was out of her bed and playing with a puzzle with her father. She did great. After another day there was this weird chunk hanging over her ileostomy. I kept asking the surgeons and they kept calling it a piece of poop. I knew it wasn't. I persistently kept asking them. Finally the WOC nurse makes her way to teach me how to change the bag and takes a 4X4 and says now just pull off the piece of poop. She says omg that is not poop. So they called the surgeons in and low and behold it was a fatty tissue that pushed its way out from I between the incisions around the stoma. Basically the performed surgery right there at the bedside and sent if off to pathology and it came back as the omentum. We were sent home the same day.

Rowan was due for take down around July 6th, we had to ween her off the steroids to be predisone free for one month prior to take down. On father day, her stoma retracted inside and I freaked and rush her into ER. After 5 hours they sent us home with the instructions of if fevers start or she starts throwing up bring her back in. We went to my sisters she swam in the pool, ate, played and had a great day. At midnight that night the throwing up started. Rushed back to the ER. She was admitted and NPO. They thought maybe she had the stomach flu. I questioned this I knew they were wrong. Made the decision since we were there to go ahead and check the J-pouch for leaks and do a dilation bc they would need to knock her out to get a central line in for TPN anyway. They also did a cat scan with contrast bc they thought something was wrong with the j-pouchbc of the fever occurring after being checked for leaks. All of a sudden her sunken stoma popped back out and looked normal. Kept getting very high fevers and throwing up finally thing started to settle down. We feed her and things were going ok. We were to be released on the 7th day. Got her dressed got all packed to go home. All of a sudden as the nurse is coming in to have me sign release papers Rowan looks at me and says I don't want to go. This is sooo not normal. I tell them we will stay until the morning. The stoma retracts back in and stops outputting completely. 48 hours later on June 23rd she was rushed into the ER for emergency laparotomy exploratory surgery. I signed a paper saying they could remove more intestines if needed. I was a total wreck. Worse than the colectomy surgery. Longest 3 hours of my life. The doctor came out and said that "piece of poop" the omentum was strangling her stoma. All her intestines looked great and they did the takedown early. It was going to be a rough recovery but she was ok. What a relief.

Two days later Rowan got a UTI bc they didn't have the catheter in right and was peeing past the cath. They were measuring her urine and poo output but this was all wrong. It wasn't until she soaked her bed that I realized it. Also the blood in the toilet wasn't from the j-pouch dilation but her urine. She also got a wound infection from the laparotomy site. They had to open it to allow it to drain. Once it was draining the fascia was a mess, this went on for days. On July 3rd she went back to the OR for another emergency surgery to correct ht fascia so she didn't herniate. Open wound+hernia= intestines spilling onto the bed. Not a good scenario. She came out of surgery after an hour and had a wound vac.

She was released after another week and we had a WOC and home nurse coming to the house every 3 days to do the wound vac changes.

We supplement with fish oil, multi vitamin, 2000UI D3, VSL#3, B complex, Tumeric, and fish oil. She is doing great and is a trooper. All of this was her journey over a 7 month period. Hoping to stay out of the hospital.

They now know to expect the unexpected from Rowan. Thankful for U of M C.S. Motts children's hospital for giving me my little girl back.

AMENDED

On Dec 8th She became very distended and started having signs of some sort of blockage. We took her to the hospital and first thing they did was a stool sample which came up positive for c.diff. I was shocked she had no signs of c.diff... No fever, had constipation, bloated belly, burping a lot. Heck no colon how is this even possible, she never got c.diff when she had UC and was immune-compromised and living at the hospital. I begged for an infectious disease consult and it was denied. Doctors put her on a round of Vancomyacin and was hydrating her for 10 days. All original symptoms continued. They faulted the Vancomyacin for her constipation.

On Dec 25th she was due to finish her vancomycin that night and all of a sudden started having incontinence and increased bm's (11) took her into ER once we noticed she had a fever of 103. Immediately upon admittance they retested her for c.diff and infectious disease deemed her first test to be a false positive. They scoped her and determined she now had pouchitis. Sent us home after 3 days with Cipro.

Two days after release all original symptoms came back. Distention, constipation, burping, no gas. Told to follow the course and scheduled to have a rectal enema study. They did that and immediately following told me my daughters intestines we dilated from the stomach to the anus and that this was not good. Three days later in Jan 3 she was scheduled for surgery to remove possible adhesion via Laparscopic lysis of adhesions. After it was done 3 days later she was giving water and all symptoms came back quickly. She was given an NG tube and another upper GI with small bowel follow through was done. It was inconclusive. Told she had a mobility issue and to seek help in Columbus OH. The next day her surgeon came in and said she wants to do and exploratory laparotomy bc she thinks she has an obstruction and the follow through was wrong. I consented. They ended up finding tons of adhesions high up and performed and omentumectomy bc it was like a spider strangling her intestines and weaving its way all over the place. They also did more lysis of adhesions. 4 days later the pipes started working.

AMENDED AGAIN...
June 2013 Rowan started showing signs of Pouchitis. Contacted the clinic they put her on Flagyl. Two days later she got severely distended again. Was still passing stools but not gas. Called and ask if I should bring her in. Told to follow the course of antibiotics for 7 days if not 10-14 days. She continue to dilate all day long and after sleep had a flatter tummy by morning. On day 7 she didn't get skinnier I finished the day and stopped the Flagyl. Worried it was causing constipation. I made appointment in the clinic.

They took an x-ray and from there we went to clinic appt. The doctor was surprised to find her so bloated. He assess it to be trapped wind. Attempted to decompress per red rubber catheter with no change. She was admitted and put on IV zosan and sent for enema study. The pouch looked normal but upper intestines were dilated giving them an indication of the distal anasatamosis. She didn't empty her bowels completely as told to do so. The next day the scoped her, dilated the rectum, decompressed her, put her on oral Cipro. My instructions were to feed her. They said they saw nothing wrong beyond the distention. We were sent home because all they were going to do was observe her. This was the biggest mistake to date...

I had an appointment i 5 days with her surgeon. We went home things seemed ok at first then 3 days later it started all over. We kept our appointment and doctor said we could do surgery in the next day scheduled or try more meds. And if something goes wrong someone else can do it and she was confident in there abilities. I was less confident. We decided for surgery because the meds she had been on for the last two weeks hadn't helped so we thought something was mechanically wrong or obstructive given her history of surgeries.

They did an ex-lap and there was one loop in the small intestines but the rest looked good. Her j-pouch was very large and considered booged down. It also was folded over onto itself. Doctor was stumped. Gave her an ileostomy to let it cool down. They are thinking the pouch has failed. Preparing me for more surgeries. I am not very excited to do this so I think we might just stick with the ostomy so long as he behaves himself.

Planning to seek a second opinion by the best doctor I can find in the world before deciding to try again or do an end ileostomy.

Mary

Ropunzels Song

Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine

Heal what has been hurt
Change the fates' design
Save what has been lost
Bring back what once was mine

Last edited by QueenGothel; 08-22-2013 at 07:16 AM.
12-02-2012, 03:34 PM   #2
DustyKat
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Your story never ceases to amaze me Mary.

Well done Rowan and well done Mum...my heroes and my inspiration.

Onwards and Upwards!
Dusty. xxx
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12-02-2012, 08:02 PM   #3
my little penguin
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03-14-2013, 12:50 PM   #4
QueenGothel
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I amended and added the last stay to my short version of my very long journey.
03-14-2013, 01:13 PM   #5
Mylittlesunshine
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You and Rowan have been though so much
Your an inspiration to me Mary x
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08-11-2013, 11:19 PM   #6
QueenGothel
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Amended Again.
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