Chronic Pancreatitis - surgery - HELP!!

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I have never posted on a site before but hoping someone has had a similar experience and can provide some guidence.  I was diagnosed with CP in 2014.  Have had 15 or more stones and more that 8 stents put in through ERCP.  I have had 4 psuedo cysts that have burst that have had to be drained.  I have also been in the hospital numerous times.  I deal with the pain as best I can because my doctors will not give pain meds unless very bad and then only 10-15 pills usually after a hospital stay.  They are recommending surgery....looking at the Pustow, Frey procedure or Whipple.  Probably the Frey procedure because the head of my pancreas is toast and the ducts are completely shut.  Has anyone ever had the Frey procedure?  If so, what was the recovery like?  I live in Denver but considering going to the Mayo clinic because I read what hospital and the surgeon make a big difference.  Another thing that worries me is since I was diagnosed, I have lost 30-40 lbs.  I am a 52 year old female that is 6 feet tall and am now down to 125-130 and am worried the surgery will make me lose more.  Don't seem to have much energy these days and sick of taking numerous hot baths and hurting all while trying to work full time.  Any advice or suggestions or anybody with a similar story that can help me will be much appreciated.  I also had a recent CT scan that showed a mass on my pancreas that looked to have moved to my stomach so I had another stent put in from my pancreas to my stomach but my biopsy came back benigh but my doc is saying with the amount of scar and dead tissue he cannot guarantee that cancer is hiding and they can't see it even through the EUS.  Does this sound familiar to anyone - need some guidance!!  Thanks!!

0 likes, 10 replies

Report

10 Replies

  • Posted

    Also, when I have an attack, my lipese usually ranges from 1500 to 7000.
    Report
  • Posted

    Personally, if I were you, I would go to the Mayo clinic and also get confirmation that this is what you should be doing, and have them do it (or whatever they may advise) there.  I've not had as advanced issues as you, but I know how very frustrating it is if you still have questions after talking extensively with your current doctors.  I had my acute attack in Nov 2015, and after over a year with few symptoms (I religiously followed diet and restrictions) this January a "flare-up" has resulted in constant pain, multiple GP and GI visits, a middle of the night ER trip, a CAT, MRI, EUS and last week my first ERCP and a 4 inch stent because my pancreatic duct was so terribly obstructed.    In 2 months I may get another stent, or bypass surgery - it is yet to be determined.  Apparently the GI team was surprised at the amount of damage to what last year seemed to be a relatively healthy pancreas.  Anyway, I know what it feels like to have a couple or two days of relative OK-ness, to be followed by 6-18 hours of pain, bloating and gas.  And wondering if I'll ever enjoy good food again, or be able to plan for normal activities.   I've only lost 10 lbs, but maybe because this morphed into chronic status so quickly.  How you can handle this and still work full-time - well, BIG HUGS and virtual support to you for that.  You owe it to yourself to take advantage of the option for a second opinion and skilled care at a center that focuses on pancreatitis, like Mayo.  (I am highly fortunate to live 10 minutes from Duke Med, and I am so glad for their expertise.)  

    Report
    • Posted

      Hi diane44431, I just wanted to ask what your pancreatitis feels like in terms of abdominal pain? I have some symptoms, but my bloods were clear as was my abdominal ultrasound. I'm 37 NS occasional drinker. Can I get your thoughts?

      Report
    • Posted

      The pain ranges from a constant soreness to twinges (not like cramps, more like stabs) that wake me in the middle of the night and don't go away, along with gas and belching.  If it wants to morph into a real attack, the abdomen gets really tight like a watermelon.    With normal everyday "active" stuff (like taking a good walk for over half an hour, or standing and moving around the kitchen preparing a meal, or gardening) the pain will start as tightness under the ribcage, then radiate to mid-back pain.  I say "My back is barking at me to sit down."  My GI surgeon said this is because the pancreas sits right up against your spine and there are all those nerves to accept messages of pain.    

      I was only ever an occasional drinker, and my GP urged me to quit completely after the first acute attack in 2015.  After I experienced about 9 months with virtually no symptoms (only some back pain from time to time, but not more than once a week or even less) I started having an occasional glass of wine, especially as my son was getting married about a year after my acute attack, and I wanted to enjoy that.  Which I did.  But I stopped completely after mid-January, because I was shocked to have this "flare-up" which has simply, never given up.  I'm just now able to eat something other than yogurt, soup and oatmeal without bringing on symptoms, and since the ERCP, I feel my digestive system is working better---but I am still awakened by pain at night (although maybe it is only at a level of 4 or so, versus the 1 or 2 which I consider I could live with, without too much complaining. Before the ERCP and stent, it was getting up to 7 or 8).  

      Report
    • Posted

      Thanks for replying!  I go for my sugical consult today with my GI doctors here at the Pancreatic Center in Denver and then Mayo the first of May.  I will let you know what they say as this is a very scary disease!!  I just want to have one day without hurting!!
      Report
    • Posted

      Good luck!  I have been taking synthetic enzymes for a week and have a surgical consult in about 2 weeks, although am scheduled for another ERCP in early June.  I've been reading good things about TP IAT surgery, which "they" seem to be recommending happens earlier in CP patients, as it can greatly improve quality of life, including NOT resulting in Diabetes.  

      Report
    • Posted

      Hi. I live in fayetteville,nc. I wanted to know what doctor you see at Duke. I been having some stomach and back pain. I been also very weak and lost weight. I been to a GI doctor and he did some lab work and ordered an ultrasound . To me, I don't think the ultrasound is helpful. He says not to worry. ....I want other tests fone. I just know my body and something is real bad in there. Everybody thinks I am overly worried. But can't help it. Hopefully you can reply to me ......it would help me a lot since you live in the same estate. Thanks

      Report
  • Posted

    I noticed your post and was wondering if you could let me know about your visit to the pancreatic surgeon in Denver and the Mayo Clinic.  My daughter started having pain when she was about 23.  She didnt have insurance and took too many tylenol for pain.  Her liver failed but they were able to restore this during an 11 day stay at Swedish Hospital.  Two days later she became septic.  They removed her colon and she spent 3 months in the hospital.  She had a history of eating disorders and had been drinking for about 1 year. Even though she had discontinued drinking she started to experience severe pancreatitis.  Dr. Raj Shaw at the University of Colorado Medical Center came highly recommended to us. He is also on the faculty at this hospital.  She had had endoscopic surgery to remove stones, open ducts and install stints about 15 times.  She's taking pancreatic enzymes and can only eat cooked vegetables with no skins and fish once a week.,

     Following the last surgery they found undigested food in her stomach. We also don't understand why she continues to have stones when she no longer has a gall bladder. She also takes supplements and protein.  She is considering seeing someone at the Mayo clinic so I would be interested to hear your experience,  Thank you for your posting

    Report
    • Posted

      Hi Tracy,

      Dr. Raj Shah is my ERCP doctor here in Denver.  He is excellent with ERCPs, EUS and stone removals.  The thing with Shah is ERCPs are his thing and he wanted me to continue them (I have had 9) but even he thought we would try one more time and then after that surgery was my only option! I just got back from Mayo after 5 days and they know their stuff.  When I got there for my first appointment, they had already viewed all of my procedure, records and came already with a plan which always makes me feel better.  Having a plan is a good thing!  After my first appointment they did an EUS to confirm Shah/UC findings and now I am looking at the Whipple surgery on 7/6.  Mayo told me that if I don't have the surgery, I am looking at pancreatitic cancer 100% and it is just a matter of time before I go jaudice.  

      My stones also didn't come from my gall bladder and I still have mine, at least for another month!!  I was told the stones are coming from all of the calcification within my pancreas from repeated psdeocysts and scar tissue from many bouts of acute pancreatitus.

      Let me know if you have any questions and I will help anyway I can.  This is a frustrating disease and we are all learning.  I am praying for your daughter and hope Dr. Shah can help.  

      Report
    • Posted

      Thank you for your response. I hope everything goes well for you during your surgery.

      I told my daughter about you and she signed into this program. A few weeks ago she had an ultrasound and they found a mass, so she's scheduled for a biopsy this Friday, June 9th. We were told before we started with Dr Shaw that people with pancreatic stones have 100% chance of developing cancer.

      We have an appointment scheduled at the Mayo clinic on June 14th. I will keep you posted as to what we decide.

      If you dont mind sharing, we were curious as to why you decided on the Whipple procedure?

      I appreciate talking to someone with similar experience. Thank you for your prayers snd I will pray for you also. Thank you very much.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up