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Crohn's Disease Forum » Surgery » Terminal ileum fistula surgery


 
06-15-2017, 04:18 PM   #61
JessPeper
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Hey JessPeper! How is the recovery going?
Hey!!! I was recently wondering how you were faring as well!

My recovery is coming along! My incision is almost all the way closed up about a week or so left and it should be all closed up! I'm excited for it to be over with. I've slowly started to do some exercises to strengthen my stomach muscles!

You've got a couple weeks before surgery yet, how are you feeling?
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3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17


Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
06-16-2017, 01:14 AM   #62
PonchoRider1389
 
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Hey there! That is great to hear! My own opinion I would stop taking those meds. That's just me. Find you a good GI doctor and do some research on the right meds you should be on to help. Lol. How is your eating and bowel movement? And yes, I'm little over a month out. Anxiety has been a big problem. I don't know why. What I mean is. I am a very go getter and attack and face the problem and solve it. I've been that but I've allowed anxiety to take more control I'm comfortable with. I have a question. Was your sigmoid colon involved in anyway?
06-16-2017, 07:28 AM   #63
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Well, was your surgery lap? Or open? And did you have your TI, valve, appendix and cecum removed? Because what you're saying I find hard to comprehend and not realistic. No offense. Could you explain ? And answer? Thanks.

Open surgery TI valve appendix and beginning of colon removed and resected due to small perforation along with fistulas. The ERAS ( https://www.google.com/url?sa=t&source=web&rct=j&url=http://www.hopkinsmedicine.org/news/publications/johns_hopkins_surgery/johns_hopkins_surgery_summer_2014/a_quicker_recovery_after_colorectal_surgery_the_er as_pathway&ved=0ahUKEwi39uqlrcLUAhUDPT4KHXPbAmQQFg iPATAJ&usg=AFQjCNECOVCT0A90uHlElvQ0Wo2tgwQSCw&sig2 =lUvcjzlS4Up32W4v2AiDEQ ) protocol is vwry different from the old way of preparing for and recovering from surgery. It is still vwry new and just catching on. I was actually the first one in Akron to hive it a go. The have done some at Johns Hopkins and Cleveland clinic now as well. The nerve blick really did a great job with the pain. I did take one vicodin afterwards but other than that stuck to the tylenol. The lack of opioids hwts the bowels movingmg quicker. Being able to eat sooner also helps the body with the healing process. Check out the link if you have time. I wholly recommend it.
06-16-2017, 07:48 AM   #64
JessPeper
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Hey there! That is great to hear! My own opinion I would stop taking those meds. That's just me. Find you a good GI doctor and do some research on the right meds you should be on to help. Lol. How is your eating and bowel movement? And yes, I'm little over a month out. Anxiety has been a big problem. I don't know why. What I mean is. I am a very go getter and attack and face the problem and solve it. I've been that but I've allowed anxiety to take more control I'm comfortable with. I have a question. Was your sigmoid colon involved in anyway?

My eating is pretty good. I learned the hard way that I should still stay away from Red meat. Couple weeks ago we had steaks for supper. I was up in the night with the worst belly ache and felt nauseous, it was the same way I felt before I went to the ER the day of my resection. That flashback was enough to scare me away from it for a long while. My bowel movements are normal. I've not been so regular in my life!

I'm more afraid to stop the medication than anything. I know they claim all the active Crohns has been removed but I have little faith in my GI. I have an appointment scheduled with a new GI for a consult. The GI I currently see is the only one in town the next closest GI clinic is an hour away. There was a waiting list to be seen, I have an appointment in August

From what I've read on my procedure and pathology stuff my sigmoid was not involved. I didn't even realize they took my appendix until I read the pathology report. I think what bothers me most about doctors is you pay for all these tests and they these very in depth results and they share half of the information with you.

Have you tried taking anything for the anxiety? Its hard to take control on something you have no control over! Just roll with the punches and stay the heck away from google. Google was my worst enemy! I watched a you tube video of an ileocecectomy ...scared for life! lol
06-16-2017, 08:37 PM   #65
PonchoRider1389
 
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That's good on the eating. And also good on the meds and GI. and see my sigmoid and bladder are involved. I have a fistula connected to each one. It's through to the bladder. He said the sigmoid likes to flop over there in the way. He said the last test I did that it wasn't all the way thru in the sigmoid. So pull it apart and stitch it. And I love researching. It helps me. I can basically do the surgery myself. Lol. He calls me the specialist. Said he wanted to get me a lab coat so I can teach his interns. Really impressed with my knowledge. So you wonder why all the questions on here. Because I just want to hear people's experiences. It's a comfort.
06-16-2017, 09:04 PM   #66
JessPeper
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It's good to be well educated. The information I've found in this forum is better than anything I've found on google! It was nice to know I'm not alone! My mom has CD she hasn't taken meds for it for years and she always tells me how bad her CD is and it really makes me angry. Maybe this disease has made me bitter but when she tells me she's having a bad crohns day I have to bite my tongue. No meds never had surgery. In the last few months it's really bothered me especially because of the healing issues. Ahh rant over! Lol

Did they tell you how long you'd have to stay in the hospital?

06-16-2017, 09:56 PM   #67
PonchoRider1389
 
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is your mother stubborn? Has she not been to a GI? Or had a colonoscopy? And well, 5-9 days. I'll have a catheter for at least 2 weeks depending on how much work is done to my bladder.
06-16-2017, 10:08 PM   #68
JessPeper
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Ehh I don't know if stubborn is what I'd call her. She eats what she wants and then whines about it later. She takes all kinds of other medications but won't take meds for the CD. She's been to a GI same one I see now. She was diagnosed 20 years ago.

That's not so bad. Thank goodness for insurance. I got my EOB for my 5 day stay and it was close to 40 grand!

06-16-2017, 10:15 PM   #69
ronroush7
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Ehh I don't know if stubborn is what I'd call her. She eats what she wants and then whines about it later. She takes all kinds of other medications but won't take meds for the CD. She's been to a GI same one I see now. She was diagnosed 20 years ago.

That's not so bad. Thank goodness for insurance. I got my EOB for my 5 day stay and it was close to 40 grand!
I am so sorry

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
07-10-2017, 05:30 PM   #70
PonchoRider1389
 
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Heyyyy everyone! My surgery got pushed back to August28th. Soo. It's actually better for myself and the surgeon. He was leaving on July 29th. Two days after my surgery and said he wants to be there and didn't want to abandon me. He is fantastic.

How is the healing JessPeper?
07-10-2017, 05:44 PM   #71
JessPeper
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That's great that your Dr cares that much!

I am finally completely healed! It now looks like I have two belly buttons! But if that's the price to pay for being symptom free I'll take it!

How have you been feeling?

07-10-2017, 05:45 PM   #72
ronroush7
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Heyyyy everyone! My surgery got pushed back to August28th. Soo. It's actually better for myself and the surgeon. He was leaving on July 29th. Two days after my surgery and said he wants to be there and didn't want to abandon me. He is fantastic.

How is the healing JessPeper?
Great news.
07-12-2017, 06:54 PM   #73
PonchoRider1389
 
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Heyyy, concrete date is the 30th of August now. And I am feeling good. I am putting on a lot of weight. I stop lifting and just trying to get fat so when I do lose weight I'll have extra to lose. Right now the Humira and Imuran are working great. But, I still have the occasional pain from the fistula. The other day I had air when I peed again. First time in several months. It's funny. I've been peeing air like this since 2009. Sometimes once a year and sometimes several times a year. Crazy how long it's been there. The other day also some UTI symptoms reoccurred. But, doubled up on my antibiotics and drank more water. Feeling better now. I kinda know the routine now. Every several months I'll have an episode and go nNPOand more fluids. So, yeah I'm feeling good. Anxiety levels are way down for the last bit. Now if I could just get rid of all the lady problems I'd be doing okay. Hahaha.
07-12-2017, 07:29 PM   #74
JessPeper
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Haha! Glad to hear you're doing well! Good luck with the lady problems!!

07-23-2017, 01:08 PM   #75
PonchoRider1389
 
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Hahha that will never go away. Lol. But, anxiety is coming and going here lately. But, all and all I'm doing okay. Are you fully healed JessPeper ??
07-23-2017, 01:14 PM   #76
JessPeper
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I am fully healed! My muscles ache now and then. Mostly when I try to do too much. It's hard to know when to just stop!

I know it's easier said than done but just try not to think about things! It'll all work out for the best!

07-23-2017, 01:16 PM   #77
ronroush7
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I am glad you are fully healed, Jesspepper

07-23-2017, 01:19 PM   #78
JessPeper
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I am glad you are fully healed, Jesspepper
Thanks Ron!! Me too!

07-23-2017, 02:54 PM   #79
PonchoRider1389
 
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I had a fistula to sigmoid colon (that they didn't know about beforehand), as well as the TI and valve chopped out.

Mine was laparascopic; presumably open surgery is going to take a bit longer to recover from. I was more or less back to normal after 2 weeks, though still took it easy for another 4.
Hey what did they do to the fistula to sigmoid? Stitch it? Or?
07-23-2017, 02:55 PM   #80
PonchoRider1389
 
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I am fully healed! My muscles ache now and then. Mostly when I try to do too much. It's hard to know when to just stop!

I know it's easier said than done but just try not to think about things! It'll all work out for the best!
I'm happy to hear you are healed that's awesome. I'll be keeping you updated as time goes on.
07-23-2017, 02:56 PM   #81
JessPeper
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I'm happy to hear you are healed that's awesome. I'll be keeping you updated as time goes on.
Sounds good! Try not to stress about it too much!

09-28-2017, 06:06 PM   #82
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Heyyyy everyone. Surgery has been pushed back all year. Then my perfect surgeon moved away. So now I see a new surgeon on October 12th. Then surgery is set for November 8th. I have been in and out of the hospital. Staying a week at a time. Keeping things under control till surgery. I can't wait to feel better and recovery and get back at it. Just thought I would give a quick update.
09-28-2017, 06:08 PM   #83
ronroush7
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I am hoping the best for you.

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