Gastrojejunostomy

[alouise09]

Hey! I'm 22 and I have been having stomach issues for 2 years now! I recently just went to Mayo clinic for my issues because I have had symptoms of celiac, crohns, and eosinophillic gastritis. I have been diagnosed with all three!
Right now my main issue is a duodenal stricture that will not stay open.
The Mayo surgeons want to do a gastrojejunostomy. I'm worried because I'm 22 and I feel like that could change my body for ever. At the same time, I don't want to end up in the hospital every 2 months with symptoms.

Has anyone had experience with this surgery?

 

[alouise09]

So is that no? haha

 

[alouise09]

I'm scared about having this surgery! It seems like I can't find anyone that has experience with it!

 

[xSophiexx]

Hiya hun i think where your having problems is a rare area but someone will be along Im sure! Just wanted to offer support. Surgery has pros and cons .. i had a ileocaecal resection after EVERY med failed .. what meds havr you tried. Hope you get an answer!

 

[alouise09]

Well on top of every acid reducer in the book and carafate, I've tried Prednisone, Pentasa, Budesonide, and now I'm on a special formula of budesonide that Mayo clinic makes.

 

[Harryw]

I had this surgery last August. I have Crohn's, which took a long time to diagnose. Rotating meds only gave me temporary relief so I finally opted for surgery. The initial jejeunostomy wasn't successful because there was a hidden secondary inflammation that previous tests didn't find. So I had a second jejeunostomy. A planned 3 day hospital stay became 3 weeks. I had lost much weight in the hospital, so had to take nutritional infusion at home for a month. After that, I regained my weight fairly quickly, and have been symptom free and can eat anything.

However, I developed an abdominal hernia, which was a risk, and will have hernia repair next month. ( I am 60 years old.)

Harry

 

[alouise09]

Thanks so much for your reply! So how painful was the surgery and recovery? Why did you end up staying in the hospital for 3 weeks?
And so now after the surgery your diet really isn't affected? I am a caffeine addict and drink a lot of coffee and red bull, does that stuff bother your stomach?
I'm only 22 and I just don't want to have a surgery that is going to change my stomach and diet for the rest of my life. I still want to live and be able to eat what I want for the most part.

 

[Harryw]

Hi -

I am happy to say that for the past year I have been able to eat normally. I gradually returned to my normal diet and weight! I've been on a couple of cruises which provided all manner of foodstuff and had no problems. And I drink coffee each morning and its a pleasure. While my digestive tract has been "re- routed", I don't feel any different when eating or performing other bodily functions.

My hospital stay was supposed to be 3 days. But I felt sick after surgery and the tests showed a problem. I have Crohn's in the jejeunem, but further tests at at the hospital done by my surgeon and gastro doctor found another area of inflammation previously undetected. So I had a second jejunostomy. Between the testing, monitoring, and surgeon out if town for a few days between surgeries, the visit stretched to 3 weeks. I couldn't be discharged until I had a bowel movement. I was asked if I did countless times a day. I was so glad when I did..

I was in very little pain after the surgeries, mostly achy. I had access to a painkiller button for intravenous relief, but only used it at night to help me sleep.
Walking in the hospital attached to the tubes and stuff was a challenge as I was achy, but I gradually regained strength and walked more often.

As I entered the hospital underweight, and lost 10 lbs. there, I spent a month at home with a self administered nutrition infusion overnights. After that, I quickly returned to a normal diet and I now feel great.

As the Crohn's is still there, I take Pentasa (so expensive) and mercaptopurine. As the latter can affect blood cell count, I have monthly blood tests, but they are fine.

Life us normal, except for the incisional hernia, which will be repaired 9/17. Thankfully, I have a great surgeon, at one if the best hospitals in NYC.

Harry

 

[alouise09]

That is so awesome to hear! I was really worried about having problems for the rest of my life with eating and stuff. I think I must not have a high pain threshold because I woke up from my gallbladder surgery in massive pain. So I'm glad they will give me IV meds for pain. I would actually love to lose some weight from the surgery, I was on prednisone a while back and gained a lot.
So do you have to get a catheter or an NG tube thing for the surgery. I think having an NG tube would be extremely uncomfortable.
Hopefully only being 22 will help me recover fast!
I'm getting my surgery at Mayo clinic, so that's about as best as you can get!

 

[Harryw]

Hi -

I didn't need a catheter, but did have an NG tube, which was the most challenging part of recovery. When it was initially removed after a few days, I felt sick which was the first sign that I had an undetected inflammation. It was reinserted, and remained in for most of the remaining stay.

It was very uncomfortable - I often had to hold it for comfort and it had to be taped to position it better. It made talking difficult, which was most annoying when I was talking on my cellphone with frends and relatives. The effort made me very tired. It also made finding a good sleeping position a challenge. Sleeping in a hospital was difficult, as staff took readings at all hours. The anti pain button helped, and I would request a sleep aid prior to bedtime.

The NG tube and other stuff on the "coat rack" I lugged around when walking laps around the ward was annoying.

But you will be at a premier health facility, so will get excellent care. What helped get me through the hospital stay was continually looking forward to the future. My wife and I called a travel agent from my hospital bed to book a cruise!

Harry

 

[alouise09]

Ugg the NG tube sounds dreadful! I know they will put it in while I'm asleep for surgery, but it will be so uncomfortable and I can't stand that feeling! I actually usually don't have an issue sleeping in the hospital. I always request Phenergan instead of Zofran and it knocks me out!
How long did you have the NG tube in before they took it out? The first time anyway. I want that thing out as soon as possible!
And what was your diet like directly after the surgery?

 

[Harryw]

The NGO tube was initially taken out after a few days, but turned out to be premature due to previously mentioned reasons...

When I finally started eating, I began with broth, juice, tea, and jello, and gradually transitioned to more substantial food..

 

[alouise09]

Thanks so much for you story! It really has helped me not feel so nervous about getting it! I love to eat, and I'm glad to know someone has had success with it!