New To This Site - Questions About Surgery TI or Balloon Procedure

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

GI Jane

GI Jane

Joined
Jan 31, 2017
Messages
385
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:
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.
 
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:
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
 
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.
 
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.
 
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:
GI Jane said:
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.
Click to expand...
I know the feeling. I retired at 55 because after surgery commuting was too stressful on my body.
 
GI Jane said:
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.
Click to expand...

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...
 
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
 
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.
 
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
 
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.
 
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!
 
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.
 
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.
 
cmack said:
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.
Click to expand...

Thanks....ya it's a hard one for me.
 
Hey all,

I hate bureaucratic bullsh!t. The left hand never knows what the right hand is doing! My father was a government agent for 30 yrs. He feels the same way. That should say something.
 
Thank you everyone....I survived the day.....very weak. Only had 600 drinkable calories which helped the runs calm down. Took my stronger pain pills which I shy away from, percocet. So was a sloth all day. My joints are killing me today wondering if its just the inflammation or is it from the entyvio. Which do you guys think? My husband arrives tomorrow yea since he keeps me on track with my meds where my mom doesn't but is a good comfort in between doctor and surgeon visits here.
 
GI Jane said:
Thank you everyone....I survived the day.....very weak. Only had 600 drinkable calories which helped the runs calm down. Took my stronger pain pills which I shy away from, percocet. So was a sloth all day. My joints are killing me today wondering if its just the inflammation or is it from the entyvio. Which do you guys think? My husband arrives tomorrow yea since he keeps me on track with my meds where my mom doesn't but is a good comfort in between doctor and surgeon visits here.
Click to expand...

GI Jane,

I'm not too sure what is causing all this pain for you right now. I wish I did, that's for sure. I think it could be inflammation or your meds. I am hoping your husband will be better able to figure out what your next move should be.

Sending you my support, keep in touch,

cmack
 
G.I. Jane,

I also don't know what is causing all this for you. I just wish it would all go away.
 
Do we ever know what is doing what? If there is still no surgery date booked I would go to the ER. Get some pain relief if they will give it to you (grr, HATE being looked at like a drug-seeker!). The visit may be flagged in the system and remind them that you are struggling when you shouldn't be.
 
Thought came to me that it might not be the Entyvio at all. When you need surgery, it could be that. Inflammation is what causes most of the stuff we end up with surgery for. I hope they give you a surgery date soon, if that is what you need.
 
Thanks everyone, we've been relaxing at the cabin again. It's getting pretty rough and all I can do to go sit on lawn chair. So happy for sun for a change so don't want to go to ER yet but so weak and having bright yellow diarrhea. Cannot remember why that happens...going to go look up.
 
GI Jane said:
Thanks everyone, we've been relaxing at the cabin again. It's getting pretty rough and all I can do to go sit on lawn chair. So happy for sun for a change so don't want to go to ER yet but so weak and having bright yellow diarrhea. Cannot remember why that happens...going to go look up.
Click to expand...

Sending support and prayers
 
GI Jane,

I put up a song for you. I hope you like it. I hope your husband is with you. I think he is a great guy from what you have told me. Keep in touch, I care about you two. ;)
 
Thanks been in the hospital since Monday. My inflammation is worse, going on Budesonide again until the surgery. Look like a dalmations dog from all the bruises, yep a hard stick and three blown IV veins...such is our life...getting out tomorrow to sit in my own bed and wait for the TI removal....little out of it Dilaudid and all.
 
Hi everyone, I can finally focus enough to type. Also, out of ICU and finally on Spinal Cord Unit for rehab now so can have computer. Yep, I like to always give the doctors something to write about. So found out allergic to gabapentin had a high dose.
Also other meds and ended up in something like a mini stroke or something called a TIA I think. Couldn't remember how to talk. Did sign language trying to communicate and spoke gibberish mixed with other languages as I know a little in a lot of languages from work. It was pretty freaky, scared my poor husband.

They had to open me up all the way not arthroscopic removal. So much pain it's crazy. I guess your organs don't like being played with and removed. Part of small and large bowel removed and of course appendix guess that's right in the mix there so ya. She checked out gallbladder and liver while in there and said they were ok. So hard time saying focused try to talk later. Thanks for all your prayers.
 
Thank you everyone. It's been weird. That strange reaction to the stupid high dose of gabapentin that left me not being able to talk was harder to deal with than the pain. Thought i'd lost my mind and wondered if I would get normal. Thank you God I did. It's amazing how many hospital workers did know some sign language which helped me during that time. I'm in a love hate relationship with the abdominal binder. Wishing I had all silk cloths with no seams. Crazy how skin sensitive I am right now. Well got to drink a little more ensure before PT.
 
What kind of cover? I love strawberries. They had a strawberry shortcake group event here which was cool. They put blueberries in with them and ice cream and whipped cream besides the shortcake. Yum
 
We have a big wooden box made of 2x6 and 2x4 buried posts. It is basically 4'x8' garden above ground at waist height. There are cats and Robins that mess around. I'm making a enclosure with gull wing doors that lift straight up that are wired wooden frames. Some hook or spring with a chain to hold it up. I design as I go. :)
 
cmack said:
We have a big wooden box made of 2x6 and 2x4 buried posts. It is basically 4'x8' garden above ground at waist height. There are cats and Robins that mess around. I'm making a enclosure with gull wing doors that lift straight up that are wired wooden frames. Some hook or spring with a chain to hold it up. I design as I go. :)
Click to expand...

Very cool, I love exact blueprints not a wing it person that's awesome.
 
Thanks. It's been rough. So distended in the stomach. How long did anyone wear a compression stomach band I wonder. I'm having a love hate relationship with it. Still having issues with constipation having to take suppositories and miralax. Still some bleeding sure will be happy when it's better. My doctor keeps telling me 6 weeks is normal recovery time and I'm only at 3 weeks tomorrow....wow that sounds weird.
 
That sounds rough. A bone heals in six weeks. Soft tissue and muscle seem to lag behind.
I'm thinking of your family and of your recovery. I send you healing prayers.
Got any song requests? :) I'll keep you company, I don't have a big night life going on. ;)
 
GI Jane said:
Thanks. It's been rough. So distended in the stomach. How long did anyone wear a compression stomach band I wonder. I'm having a love hate relationship with it. Still having issues with constipation having to take suppositories and miralax. Still some bleeding sure will be happy when it's better. My doctor keeps telling me 6 weeks is normal recovery time and I'm only at 3 weeks tomorrow....wow that sounds weird.
Click to expand...
Prayers
 

Similar threads

Maya142
Surgery questions and experiences
Replies
9
Views
2K
Maya142
Maya142
A
how elective should elective surgery be? (tests bad, no meds left, but symptoms cause differing surgical opinions)
Replies
7
Views
2K
Guerrero
G
K
Newly Diagnosed with Crohn's
Replies
6
Views
1K
Sophabulous
Sophabulous
IHaveAHole
Upcoming LIFT Procedure, Possible Temporary Ostomy, Seeking Advice
Replies
0
Views
3K
IHaveAHole
IHaveAHole
Papantoine
Crohn's, Ken Doll, multiple surgeries, looking for helpful advice
Replies
6
Views
2K
my little penguin
my little penguin

Latest posts

Back
Top