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Crohn's Disease Forum » Your Story » CROHNS. FISTULAS to BLADDER. AIR and SURGERY.


05-25-2017, 02:58 PM   #1
PonchoRider1389
 
Join Date: Jan 2017
Location: Logan, West Virginia
CROHNS. FISTULAS to BLADDER. AIR and SURGERY.

Hey guys! Going to share a little of my story and what's going on. WOULD LOVE if there are others out there that have or are going through the same situation.

I am 30 and have had Crohn's for 15 years.(2003) The first half of those years I was very ignorant of the disease and nutrition etc. I spent a lot of years in and out of hospitals and it became my second home. Around 2006 I developed a stricture in my right ureter actually 3 of them and it blocked urine from draining to my bladdder. This would happen three times of the next 7 years and having multiple surgeries on it and countless rental stints and kidney infections and more hospitals. So 2013 I had my right kidney removed due to all those years of infections and stints. It eventually killed the function of my kidney so took it out and have felt 100% better. Now also during this time. I was dealing with my Crohn's. Which they say cause me to lose the kidney.

My Crohn's is located at the terminal ileum. I have never had an obstruction or any bleeding or anything major. I have took every medicine leading up to now. Which I'll get back to. But in 2009 I started on remicade and it worked really well. I was on it for 2 years. (2011) and I could digest concrete on it. lol I got fat. So I decided on 2011 to take myself off of the remicade and do it myself. I started really learning about organic eating and lifestyle so I did that for the next 5 years. I really didn't have any problems. I would have an accosional small flare here and there because of something bad I ate. But my eating was really clean and organic. I started into fitness and bodybuilding which is always good.

So in 2009 something else happened I peed air for the first time. It was weird and hurt a little but looked my foam. I was like okay. Didn't think much of it. Yeah I know right. And over the next 5 years it would cone and go. Like 1-2 a year. Until march of 2016. I developed a terrible UTI while visiting D.C. I had to cut the trip short and rush back home and was admitted in the hospital for 9 days where I was peeing lots of air and what looked like stool. My urine was brown and clumps of brown were coming. So finally after almost 2 weeks it stopped and I would go on to be admitted 3-4 times that summer for UTI. so July was my last stay. I have been on antibiotics now for over a year and it's kept the UTI at bay and I haven't had any air until today. A year later. But my pee has always been cloudy and yucky at time. And I also started peeing out white clump stuff which were said to be crystals. So here I am now May 25th 2017. I am scheduled for surgery July 27th 2017. Why? Because after a years worth of test and doctors and surgeons. I finally found the best doctor/surgeon I have ever met. He is fantastic. He is located at WVU in Morgantown, WV. HE WAS EVERYTHING I wanted in a surgeon. Because I was told a year before I would need surgery. So thus began my research. (Which I believe the first half of me not understanding and eating terrible is what cause the fistula to form)

My surgeon calls me the Crohn's specialist and wants me to teach his interns. Lol. So July of 2016. I was told looks like you have what is called a fistula. I said okay. So basically after a year of really understanding my disease and what Crohn's is. I knew what was going on. I diagnosed myself before the test revealed what I knew. Which is. I have a fistula from my Termail ileum to my bladder. Causing all the intestine bacteria to leak over into my bladder thus causing the UTI and air and brown chunks. I also have a small fistula to my sigmoid which the surgeon said is common because the sigmoid likes to flop over there in the way and he said he can just pull it off and stitch my sigmoid. Annnnnd my TI is very narrow. So, here we are two months out from surgery and I'm on Humira and Imuran. He wants me to stop them on July the 6th. And I can pick them back up a month after. Sooo

He is going to do an open surgery and stitch the sigmoid. Urologist surgeon is gonna stitch my bladder and my surgeon is going to resect the terminal ileum, valve, appendix and cecum. Followed by a side to side anastomoses. Soooo

Yeah, it's been a journey of ups and downs. So from what I read people say they're glad they had the surgery.

MY QUESTIONS.
1. Is anyone in a similar position as me?
2. If so what advice do you have?
3. How was the surgery? Any complications? Painful?
4. What advice do you have for surgery? Tips?
5. How was the D afterwords? How long before your colon traineditself?
6. Should I come off the Humira before with the risk of it not working again?
7. How is your eating after surgery? Soft? Low residue?
8. Did you need a tube in your nose?
9. Did surgery help you? Did it reoccurring?

Just a few. Thanks guys and look forward to you story and experience.

Last edited by PonchoRider1389; 05-26-2017 at 12:30 AM.
05-25-2017, 04:03 PM   #2
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I have not had those particular areas removed but had my terminal ileum removed and part of my colon removed . They made me get up as soon as possible . Try to walk as much as possible the weeks after the surgery. They did not allow me to lift more thsn 25 pounds for a few weeks. I would follow your doctor's advice about the Humira. Concerning eating, i can't eat any skin like from potatoes or apples since the surgery. It toom my stomach a while to settle down afterwards. Please keeo us appraised of how you are
05-25-2017, 04:03 PM   #3
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I have not had those particular areas removed but had my terminal ileum removed and part of my colon removed . They made me get up as soon as possible . Try to walk as much as possible the weeks after the surgery. They did not allow me to lift more thsn 25 pounds for a few weeks. I would follow your doctor's advice about the Humira. Concerning eating, i can't eat any skin like from potatoes or apples since the surgery. It toom my stomach a while to settle down afterwards. Please keeo us appraised of how you are
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