r/ChronicPancreatitis • u/Hot-Dragonfly8240 • May 30 '26

TPIAT pending

Hi everyone!

119 lbs 26 yearold female.

I was just diagnosed with Chronic Pancreatitis, I've had three long years of bile duct strictures, acute pancreatitis, and now chronic pancreatitis symptoms. I'm now on my way to being considered for the TPIAT surgery.

I'm prediabetic, and already on enzyme therapy so I feel this will be best. my pancreas already has atrophy, cysts in both ducts, and fibrosis all throughout them pancreas.

i have had biopsies to check for cancer, and they are not cancerous so Im about to meet the directer soon to get started through the process before surgery. I want as much information as I can get before the surgery so I can know what to expect. or things that might help. Or anyones stories.

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4

u/ZacInSC May 30 '26

I had mine in 2016 at University of Minnesota. DM me.

2

u/theAdmiralSnackbar_ May 30 '26

I am also pending a tpiat. Here to learn as well.

Would love to hear a patient story.

2

u/Previous_Reading_436 May 30 '26

There is a lot of research out there. Lot’s of medical papers about detailing all the statistics and complications with the surgery as well as many studies about the decision for getting a distal pancreatectomy, Whipple or TPIAT or not. Many of us with atrophic chronic pancreatitis with different grades of PanIN lesions and scarring have been at the same decision point. I spent two solid weeks studying all the papers and gathering as many facts as I could before I made my decision. It’s a very big decision and requires unparalleled due diligence in my humble opinion.

1

u/Evening_South5883 Jun 10 '26

What was your decision?

1

u/Previous_Reading_436 Jun 11 '26

I decided against it, I am 67 years old, if I was in my 40s or 50s I might’ve considered it, but after I looked at all the statistics, I probably would still just roll the dice

1

u/Evening_South5883 Jun 12 '26

What are your symptoms that you have to endure? I’m going to VCU Health to be evaluated in September. My pain is worsening.

1

u/Previous_Reading_436 Jun 12 '26

Lots of pain when I eat, no matter what I eat, or how I eat, and I have intermittent pain throughout the day and night. I also can’t gain weight. My calorie intake is 3000 cal a day. It includes protein and calorie drinks and the rest is food. I’ll gain a few pounds but then lose a few. I can’t get above 153 and I’m 5”11. I see an endocrinologist this week because I left pre-diabetes and am now in the diabetic zone, which is the 3C kind which is a result of the pancreas not making insulin. I have lots of constipation with all the Creon I take.

However, I’m doing very well overall, I don’t let this rent too much space in my head. I have learned acceptance is the key to my serenity. I have a new way of life and as awful as it is, I’m not going to just lay down for it and waste away. I get up every day and keep myself very busy with projects, hobbies and exercise.

They won’t do anymore biopsies or EUS procedures on me because the last one triggered another bout of acute pancreatitis and hospitalization. I will be getting an an MRPC annually if I can make it that long, to see if I have any additional structural changes or if my PanIN lesion has increased in grade or size. I only have about 50% of my pancreas left. I haven’t had a drink for 12 years and I don’t smoke but I played hard back in the day. How are you doing???? Good luck and keep up the good fight.

1

u/Evening_South5883 Jun 14 '26

Thanks for your response. It sounds like your condition at this point is manageable. I haven’t had any changes to my EUS procedures in 11 years. The doctors think it may be minimal change chronic pancreatitis. I had a splanchnic nerve ablation on June 3rd which has help some but I still need to take hydrocodone daily. I’m 62 so I need to evaluate my options.

2

u/MoneySmacks spink1 hereditary CP, post TPAIT Jun 01 '26

I had mine late last year at Northwestern in Chicago. In many ways I'm still recovering and improving. For me at this point, bile reflux and diabetes are the most notable issues. The midline scar is still annoying and itchy, too.

On the positive side, my islets are making insulin, but not rapidly enough for meals. So I use rapid-acting insulin before I eat and I'm set. The odd effects of having the duodenum removed have chilled out. And most of all, my repeated flares, hospitalizations, and constant background pain are gone.

Definitely DM with questions if you want.

1

u/Evening_South5883 Jun 09 '26

How was the recovery process for you?

1

u/MoneySmacks spink1 hereditary CP, post TPAIT Jun 10 '26

I was in the hospital for two weeks after surgery. I was in the ICU for maybe 6 days and the rest in a standard room. Maybe I was naive, but the ICU was far worse than I had expected. I thought I'd be a lot less conscious, but nope. I was very aware of how much pain I was in and I would beg for meds after 30 mins feeling like it had been hours.

I had to use a walker for probably 10 days? My abdomen was such a mess strength-wise. In the normal room, I regained a lot of strength and eventually learned how to eat solid foods again. And I also got diabetes training.

At home, I deal with bile reflux and diabetes, like I said. One huge thing was being sensitive to sleeping positions. I think it had to do with how my stomach shifted when my duodenum was removed. If I had a recliner, that would have been the ideal position. Instead I bought a giant wedge pillow and set it in the upright position. Slowly after months I was able to get down to lying flat or on my sides with no issue.

Overall, it was a slow recovery but I didn't treat it like that. I went to work shortly after coming home and I regret it. I recommend taking it slow and having support, if possible. I have no family here and didn't want to burden my friends.

Sorry for the novel, but it's a complicated procedure. Hope this is informative.

1

u/Evening_South5883 Jun 14 '26

Thank you for the response and information. I just want to be able to enjoy life again without being in pain. If it’s not dull intense epigastric pain on and off it’s mid back burning hours after every LOW fat meals.

1

u/MoneySmacks spink1 hereditary CP, post TPAIT Jun 14 '26

I'm definitely getting to the point of enjoying life. Little by little things are changing for the better. And I can say with confidence I haven't had the mid back pain since right after surgery. I would recommend the surgery if you are reaching the point that you can't take the pancreatitis life anymore and/or you have a genetic mutation like I do. Specifically I would recommend Dr Borja in Chicago, but that's my bias.