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Crohn's Disease Forum » Your Story » New To This Site - Questions About Surgery TI or Balloon Procedure


 
01-31-2017, 08:44 PM   #1
GI Jane
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New To This Site - Questions About Surgery TI or Balloon Procedure

Hi one and all I am happy to have found this website. I belonged to one in the UK which disappeared so found this one now which I'm grateful to discover.

I came down with Crohn's Disease after discovering I was anemic and the reason was bleeding. After Colonoscopy, Endoscopy and Capsule Endoscopy I had my answer for my weakness. This was in 2004 I believe it is a blurr sometimes. Mine was from being in an area uninhabitable for humans, gotta love the military...anyway life happens and here I am they took responsibility and so at least everything is paid for by the VA one bonus I guess??

I've been on everything there is I think. Went into remission for 3 years and now it's back with a vengeance. Last test: At least one fistulous connection between distal ileum & ascending colon. Scattered sigmoid colonic diverticula. Calcified uterine fibroids. Lymph nodes prominent iliac mesenteric nodes are reactive. Difficulty to cross the ulcerated strictures in TI, 2 of these were tranversed ulcerated. Couldn't reach the proximal most stricture. Extremely narrow at TI, some blockage, cobbling, strictures. Started Envivio one does in and am on Budesonide and other normal pain and muscle ones.

The thing that confuses me is that I'm constipated for a week now. Almost nothing coming through, which I've never had always runs. Stomach is distended, more pain than the normal- bad pain. I have a high tolerance to pain which the doctors said is a bad thing in my case because I wait too long to say anything....what can I say was raised that way and the military way. The doctors last month mentioned doing a balloon procedure or surgery to removed the damaged TI area. Has anyone had the balloon one out there? So tired of it all hoping surgery might help as nothing else is anymore but nervous of the once surgery starts it just means more of the same.

Any words of advice and experience on the balloon procedure or TI surgery would help. Thanks. Also can fistulous connections ever unconnect?

Last edited by GI Jane; 02-01-2017 at 01:08 PM.
01-31-2017, 09:21 PM   #2
ronroush7
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I am not sure which section but seven years ago I had six centimeters of my stomach removed. It wasn't balloon surgery and I am not sure which section of my stomach was removed. They tried getting me up walking the day after surgery. They started me off on popsicles when I was started on food. For the first couple of months, I couldn't lift more than something like twenty five pounds. Go light on food when you first get home. Try to walk as much as you can. Keep us updated. I wish you the best.
01-31-2017, 11:00 PM   #3
cmack
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GI Jane,

Are you an Armed Forces Service member? If you are, you have my full support already!


(My Grandpa was in WW2)

I really hope this thing gets better for you. I also wish you a quick recovery.


I might not have the answers but boy can I have a good "Bull sh%t.

all the best, feel free to contact me directly or on this thread,

Your friend,



cmack

Last edited by cmack; 01-31-2017 at 11:01 PM. Reason: error
01-31-2017, 11:08 PM   #4
cmack
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Hey Jane,

Just realized you are a soldier. Pardon me. You are a very courageous human being, thank you for your service not only to your country but to the entire free world. You are a truly good person.

I can't thank you enough,

cmack
02-01-2017, 12:00 AM   #5
ronroush7
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Second that. Thanks for your service.

02-01-2017, 12:33 AM   #6
Justanothercp
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Hi GI Jane.
I had option of resection vs balloon and opted for resection. I felt if the bowel was diseased, it needed to come out. I thought balloon was just buying time.
My resection was about 15 years ago. I have been managing since with meds, more meds than I want to take, but I work full time, exercise, eat reasonably normal and live well.
Good luck to you.
02-01-2017, 01:12 PM   #7
GI Jane
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Justanothercp I think that too lately on buying time maybe just because of the pain not sure. Have you only had the one surgery? I love to know time frames like in 15 years second surgery and such just helps me wrap my head around all of this information.

Thank you cmack and ronroush7 for your kind words. It's hard being retired barely 50 years old.
02-01-2017, 01:48 PM   #8
cmack
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GI Jane,

I mean what I say. You have it tough, just like the rest of us do, or have had it in the past. I feel for you and I'm here for you my friend!

Best regards,

cmack

Last edited by cmack; 02-01-2017 at 05:54 PM.
02-01-2017, 04:15 PM   #9
ronroush7
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Justanothercp I think that too lately on buying time maybe just because of the pain not sure. Have you only had the one surgery? I love to know time frames like in 15 years second surgery and such just helps me wrap my head around all of this information.

Thank you cmack and ronroush7 for your kind words. It's hard being retired barely 50 years old.
I know the feeling. I retired at 55 because after surgery commuting was too stressful on my body.

02-01-2017, 05:16 PM   #10
Justanothercp
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Justanothercp I think that too lately on buying time maybe just because of the pain not sure. Have you only had the one surgery? I love to know time frames like in 15 years second surgery and such just helps me wrap my head around all of this information.

Thank you cmack and ronroush7 for your kind words. It's hard being retired barely 50 years old.
Yes, only one surgery.
Since my surgery, I had one brief hospitalization with obstruction, that thankfully resolved. I really do watch what I eat, which seems to make a big difference for me. I take a lot of meds that I wish I didn't have to take, but my MD told me the goal is to hang on to as much bowel as I can for as long as I can. So far, I tolerate the meds well and thankfully haven't developed any of the awful things they warn you about.
It is a journey and a daily battle to behave and do the things I need to do to keep this body working best...
02-01-2017, 05:49 PM   #11
cmack
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Justanothercp,

You are on the right track. I appreciate your posts. I respect the daily battle to behave and do the things we need to do part! Takes discipline like I never could have imagined. Gets easier with time, for me at least, it is becoming more and more the norm.

All the best,

cmack
02-10-2017, 03:45 PM   #12
cmack
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GI Jane,

I'm wishing you luck with your struggle. You can beat this damn thing! You are as tough as they come.


your buddy,

cmack
02-11-2017, 02:19 PM   #13
DougUte
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GI Jane

I had surgery right after I was diagnosed in 2010. It has been over 6 years since that surgery and I have been on meds ever since. I think the way to go is to be your own advocate. Unfortunately that means telling the docs about everything when it happens. It has been against my nature also. Not telling them leads to doctors not believing you when you tell them about extreme symptoms going on. Not a good thing.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
02-11-2017, 02:31 PM   #14
cmack
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Doug,

I hate it when they wont listen. You are right about being your own advocate! I totally get that one. So very true. If you don't tell them over and over they tend to dismiss it.

Good advice,

cmack
02-11-2017, 02:37 PM   #15
ronroush7
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Agree

02-11-2017, 05:48 PM   #16
cmack
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Hey GI Jane,

Hope you are OK buddy. Give us a shout if you feel up to it.

Wishing you a speedy recovery and some well deserved rest,

cmack
02-13-2017, 08:34 PM   #17
cmack
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Hi Jane,

I hope you are OK.
02-13-2017, 09:47 PM   #18
GI Jane
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Had the balloon procedure from upper and lower to try to get past blocked areas. They said from what I can remember still fuzzy that they still couldn't get through without a risk so I'll need the surgery to remove the TI which is way scared and not able to absorb nutrients anyway. They were sure how long until I can get in could be up to two weeks..sigh...I just want it over with so I can get better. I'm kindof used to liquid diet now so that's good I guess. It will be weird when I can eat again. Chewed some gum just to feel the sensation of chewing silly huh. Thanks for your guys understanding.
02-13-2017, 09:50 PM   #19
cmack
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I'm so glad you are OK. We love you like family around here!

I'm praying for you buddy!

Your buddy,

chris.
02-13-2017, 09:51 PM   #20
cmack
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Man alive! I missed my GI Jane!
02-13-2017, 09:55 PM   #21
cmack
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GI Jane,

Welcome back my friend! If you can read this it means you are still alive. Maybe fuzzy, but still with us.
02-16-2017, 11:14 PM   #22
GI Jane
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Got home from hospital yesterday....lot of pain today being a blob. Did a photo Creative Arts Projects so busy which was good. Found my old video I did.

https://www.youtube.com/watch?v=AfacC5vBZdE

Going to work on one for my Crohns to give me something to focus on which is hard. Thanks for caring it helps.
02-17-2017, 12:08 AM   #23
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Is it nice to be home? Am I reading it right that you are now waiting a few weeks until surgery? Boo to being in pain. Yay to doing a Project!
02-17-2017, 12:18 AM   #24
cmack
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You are feeling pretty rough. I think It will get better though. Eventually.
02-17-2017, 12:20 AM   #25
GI Jane
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It is good to be home....well at my mom and sisters as they live closer to hospital I live many hours away so surgeon wanted me closer. At first I didn't want to be at home was kind of nervous to be. But now that I am and no vampire this morning yea. The pain is so tiring.....I keep thinking ohhh I can have something besides Ensure, Cream of Wheat and Potato soup which was my diet for two weeks. But I have no appetite...was able to get a couple tablespoons for egg salad yea.
02-17-2017, 12:34 AM   #26
cmack
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GI Jane,

I'm so glad you aren't in the hospital anymore, I hated it every time. The family care. They want to help you. In my family we were always that way. I guess we all fall down and there is no harm letting someone help pick you up a little. You have lifted others. Maybe you could let them lift you as well.

Just my thoughts.
02-21-2017, 09:20 PM   #27
GI Jane
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GI Jane,

I'm so glad you aren't in the hospital anymore, I hated it every time. The family care. They want to help you. In my family we were always that way. I guess we all fall down and there is no harm letting someone help pick you up a little. You have lifted others. Maybe you could let them lift you as well.

Just my thoughts.
Thanks....ya it's a hard one for me.
02-21-2017, 10:03 PM   #28
cmack
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That's how you were meant to be. I especially appreciate that coming from a veteran.
02-22-2017, 10:34 AM   #29
GI Jane
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Everyone say a prayer meeting with surgeon in a few hours.....sigh....

Come on everyone sing it with me.....

https://www.youtube.com/watch?v=2H5uWRjFsGc
02-22-2017, 10:38 AM   #30
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Praying

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