Hi all, I need to know if there is anyone out there that has had successful pancreatic surgery to fix pancreas divizum? Has anyone been pain free? and how many developed pain again with worsening symptoms.
Thank all,
God Bless
Kathie
Hi,
My name is Carolyn and I had acute pancreatitis for 30 years and have been chronic for 10 so I know a lot about the disease over 40 years (I’m 59).
I have a partial pancreas divisum…I was probably born with it but it was made worse nine years ago when a stent I had in me slipped. ,My DR was out of town and his assistants refused to take it out for 2 weeks. They ruined me for life.
I have a stricture in the head of my pancreas which needs to be dliated every 21/2-3 months which is very stressful and painful. If your stricture is in the tail or body ,you may be eligible for a pustow procedure which I hear has good results.
A whipple is the last resort…don’t do it as the risks of being in pain afterwards is very high. Some people are having pancreatotomies with islet cells replacement but I don’t know what their condition is exactly.
Please read my story at bloom@napanet.net and we could perhaps e mail or talk by phone which I find very useful.
Carolyn
Hi Carolyn,
My name is Durga and I’ve Pancreatitis for 13 yrs. If you get a chance please read my story or go to website www.inspirationbeadworks.com, which has more information than the Care Place story. I had Peustow procedure in 2000 and they opened up pancreatic duct and sewed it to the intestines, found a big stone removed it (before the surgery I symphicterectomy where the specialist removed lot of stones he found for 3 hrs and thought I’m fine and can go home and start my life new, but within two days I had such a bad attack which shook the whole staff, then next morning he came and handed my case to the surgery dept) then the surgeon found my gall bladder was totally damaged so she removed that too. Then within 2 to 3 months I started getting attacks where pain was unbelievable just like before so they decided to put J-tube to put some pounds on me so that if I need in future I have to go through another surgery. I was in early 30’s.
We changed the doctors and went to PENN and I had Whipple procedure in 2001 after gaining 10 pounds that is I was 80 pounds. The surgeon after reviewing the nutritional levels he went ahead and did the Whipple because the head and body of Pancreas were totally damaged that’s why after Peustow procedure the pain did not go away. I was worried that pain will come again so I asked the surgeon to do the Pancreatectomy. He said, I can’t do this for you because you are very young and you have kids. The total Pancreas removal can bring so many problems. The type1 diabetes is going to be very hard and also there are other problems which can be very dangerous. So after few months my pain came back and I’m having attacks since then. If I didn’t had those procedures maybe I could’ve died, that’s what the surgeons before the Peustow said. If you delay more than one week we can’t give any guarantees. So I had to ask them to do the same week. Sometimes I think why did I go through all those procedures and still suffering. If I hadn’t go through those procedures who knows whether I was going to be alive or not. Now I don’t have a good quality of life I agree. But there are so many advancements in the science and technology and they are able to keep me alive for my family with the tube feedings, pain medications.
I get frustrated like everyone and I get attacks also think about ending it. But sometimes I feel so lucky that to be alive to see so many things that my kids are doing and enjoy them.I want to be here and want to see what my son is going to become because he is so smart, loves to do so many things, writes beautifully, his Piano playing makes audience feel the music and really enjoy it as his teacher say, he makes his own music on guitar and they sound so nice. My daughter loves gymnastics and today I went to pick her up from the bus stop she did cartwheels ( she used to worry that she can never get it last year), just like her brother she loves music and reads 5th grade level books,(she is just 7yrs old), writes beautiful stories and takes care of mommy and helps around the house. She is so much fun to watch growing beautifully and my both kids are inspiration. My husband, I got to see his wonderful side, his heart filled with so much love and tries to make people around him comfortable all the time.
It’s such a complicated disease, everyone has different experiences. And I get to see so many people struggling but leading great lives proving they are not just patients but wonderful human beings. Carolyn, I hope you have less and less painful days and more good days to enjoy the life.
Lots of love and many hugs,
Durga.
Dear Carolyn:
Thanks for your words of wisdom regarding the Whipple. It sounds like it is just a serious as the total pancreatectomy (sp?) and just as painful. It really helps to hear what others are going through. Take care.
EllenC
According to my research, the morbidity rate for a Whipple is approximately 20%. They say that about 80% can live a fairly good life. Also, depending on the conditions under which a Whipple is performed, up to 5% can die (this should not include you!).
Also, they say that a Whipple can buy you about 2 years of relief and, after that, you either stay OK or you go down into CP (chronic pancreatitis).
I had a Whipple in 1995. I was near death and was give this option to possibly live at all (1 in 10,000 chance at the time). I lived and did get some relief for the 2 years and it has been downhill since. Now I am bedridden and go to the hospital for 3-4 day stays about every 5-6 weeks.
I do have CP, chronic pain, chronic nausea, and a few other things. I am also on heavy narcotics 24/7.
Best of luck to you and may you be in the 80%, which are prety good chances overall.
Anyse