Late 90's I was having alot of pain & problems also finally they found it was my gallbladder. They removed that and probably for a few months I did well. Then it started again, so my gastro doctor decided to do an ERCP. He thought when they removed my gallbladder I had alot of stones, and the stones got stuck in the duct. He decided to send me to Dr. Lehman. I live in Ohio, I'm about 2 1/2 hrs away from him.
Dr. Lehman did an ERCP & that's when he found I had a pancreas divisum, so he put 2 stents in. That helped for awhile, then it started up again. I went back; this time he cut the ducts & put steroids around opening. Then I probably had about 6 good years where I didn't have pain, nausea, or vomiting, but during that time I also got a kidney stone.
June 2006 is when my life has started to change forever...I became really sick & was hospitalized. For the next 4 months I was sick and seen Dr. Lehman several times. Finally early Sept 2006, he decided he wanted "belly rest" so he put in a g-tube to do feedings thru there. For 2 yrs I used this tube hanging out of my belly on & off. When my first pancreatitis attack came, I thought I was gonna die. 2008 comes my attacks started coming closer & closer. I was in hospital every time I had attack. That's just how bad they were each & every time. Now over the time, I had g-tube placed, I ended up having them replaced a few times, and also they made it a g-j tube a few times. Even though a tube doesn't sound good, it helped me alot because if I needed nausea meds, I could put it in there and within just a few minutes the meds would take effect. Plus the greatest thing ever was when going for tests, I didn't have to drink the stuff I just shot it in there...lol! I was starting to think I wouldn't never let go of this thing!!!
Dec. 2008 Christmas day comes another horrible attack, they sent me via ambulance to IU. Jan. 2010 Dr. Lehman comes in decides it's time to send a surgeon to do a j-tube placement separate from the g-tube. Now that means 2 tubes hanging. Needless to say it didn't stay in long, so I went back, they put it in one again as a g-j tube. As the months are going by 2009-2010 I'm now in hospital at least once a month, and several times twice a month. I'm thinking this will be the way I die for sure. I don't have alot of family, so I'm pretty much going thru this by myself. I'm mad abd I'm sorry to say this and I hope you don't get offended but I'm also hating god. I just didn't understand why, why me. I'm also trying to tell myself that there are people in way worse situations than me.
Beside the year before Aug. 14, 2010, I'm in the ER every week; I swear. I'm being admitted once a month, as I said before and sometimes twice a month. In between I get a few infections. One time I was in hospital a month. It was just never-ending. Then they started putting mediports, and groshongs in because all my veins were basically gone. I also get infections from those, so they would take them out wait a month & replace them.
I was having IV's put in my feet, legs, ankles, neck...anywhere they could get them. Finally Dr. Lehman said to me, do you want to see a surgeon to see if he has any options for you? Because Dr. Lehman was thinking the pancreas needed to come out. I was researching that and I just didn't want to see that as a option per say. I finally meet with Dr. Zyromski who was highly recommended by Dr. Lehman, but he was the one I had met once before with the j-tube placement. He told me about the "Frey" procedure invented by a doctor named Dr. Frey. They take out the head of pancreas, then take the small bowel and attach that it to the ducts to let things drain that way. I was so scared, but I was buying into more of the fact at least it was only part of pancreas and more & likely wouldn't become diabetic. He also told me the others who he had performed this surgery on had really good outcomes. By this time, I'm thinking this is what I need to do. Plus I felt comfortable with Dr. Zyromski, he has good beside manner, and he really cares about people. Not just into to making money or whatever other doctors make you feel like.
The day came for the surgery, I was terrified literally and let me tell you, I have had so many surgeries...gallbladder, tubal, knee, hysterectomy, nasal, and of course the ones with this illness. Surgery was going to take up to 6 hrs, mine lasted 4 hrs. They had problems in getting me to go all the way under because of all the pain medications I have been on for over a 5 yr period. Let me tell you, I built up such a tolerance that when I did start to wake up in ICU, wow I really thought I was dying. I have never ever ever felt that much pain, but remember I have/had alot of pain meds on board, so of course it's gonna be harder to control pain. They had cut me from right below my breastbone down then around belly button. I have a funny looking J but I'm really impressed with what it looks like only 6 months after. He does good work I must say!
I was in the hospital for 8 days. It was rough the first week, but with everybody involved in my care, I felt comfortable. I had 2 different pain meds to take to make sure my pain was controlled, and nausea meds too. Within 2 months, I was back up and pretty much ready to go! I had lost my appetite and foods I liked before didn't really appeal to me. It was kind of strange not liking foods I loved before. I literally had to make myself eat because I had no appetitive. But man, once that passed, and my pain was controlled, look out I started to eat things to try that I couldn't eat before, without getting sick or having pain. I actually ate a whole greasy hamburger, it was hella good and no sickness!!! I did forget this part because for 2 mos before my surgery, I had to do TPN feedings thru my groshong because Dr. Zyromski wanted total belly rest. That wasn't fun and it was a pain in the ass!
I can't forget to tell you this either...One early morning I was having bad nausea, long story short, I went to vomit and I jumped out of bed and it was like I knew...the j-tube was coming out my throat. I had to literally pull about 15 inches out. Nobody as in doctors has ever heard of anybody doing that! Leave it to me to be the first! Anyways, I hope that you can decide if it's an option for you, to do the Frey procedure. It has absolutely saved my life! It's been 6 months and I can pretty much eat what I want without having the nausea or vomiting. My favorite food is Mexican, and that food does not agree with a sick person at all, let me tell you! That's right that is a biggie for me because I was such a puker; if you will!
My pain is virtually gone, under control and I have not had one pancreatitis attack or been admitted to hospital! If it wasn't for Dr. Lehman or Dr. Zyromski, I would still be lying in this bed, day in and out; giving up. Which I was basically doing, because I stopped caring about everything, even showering. I sometimes would go almost a week without showering, because I didn't do anything or go anywhere, so why would I when I felt like total crap. I was literally dying inside and out.
When I went back for my follow up appt with Dr. Zyromski he walked in totally shocked from how I looked. He said when I first met you 6 months ago I was a very sick person, and I see you now I would never believe you're the same person!
I hope my story will help you and any other person going thru through this. That's my goal to get my story out there, don't ever give up because it will get better especially with two amazing doctors named Dr. Lehman & Dr. Zyromski!
Dr. Zyromski had me speak to another woman having the same problems and was scared about the surgery. After I spoke to her, told her my story, she also was amazed how I looked that day. She did have the surgery and is doing well having no problems! Also a few months after surgery all my tubes were removed and I'm doing really good! I know I keep kinda repeating myself on that last line, but if you knew me you would really understand!
Ok enough of me I wanna hear your story, etc. If you have any and I mean any questions please dont hesitate to ask. I really want to help you :)