stricture in pancreas duct from ercp that can't be fixed - please help!!

[Curls]

My 72 year old dad is having repeat pancreatisis attacks because of stricture in the pan. duct caused by a stent put into during an ercp to remove a non-cancerous  adenoma of the ampulla.

With each attack they remove and replace the stent which apparently is clogging up and then causing the attack.  He's been through some 13 of these procedures in the last 2 years. The enlarging with stents hasn't worked yet.

He's been told by top doctor's that he's not a good candidate for the surgery, get this, because his attacks haven't been bad enough so the duct hasn't stretched out enough from the backups, so it's not big enough yet and therefore is correlated with a poor risk of surgical success.  (They use the stretched duct to rebuild the new one.)

So, we are at a dead end of options and ideas.  For now he's getting the replacements every two months to avoid the attacks, but he can't do this 6-x a year for however long he lives.  In a year if there's no improvement he'll have to do the surgery even though it's a bad option, high risk even when a good option.

So, does anyone know any excellent experts in this field, either surgeons, ercp, or pancreas/gastro?  Where are they located?  He's talked with Beth Israel, Columbia Presbetarian, and Dobbs Ferry.  And is working on Tuffs, Albany.  He's run out of enthusiasm to go and get the same answers.

And does anyone have any ideas?  Any experience with the surgery for the pancreas duct?

Any help would be sooooo appreciated.

[Curls]

Hi.  Thanks for the ideas.  I'm going to have to start doing some of the follow through research on the sites my dad's liked (and any others I can find).  My dad's been to several top of the field, leading edge people at this point, and there's just isn't a solution out there.  Fingers crossed that someone has some idea eventually, or his body starts to recover on it's own.  

You have certainly been through a lot to figure out what's going on with you.  The persistance and retaining your sanity is something to be proud of.  I'm always glad that I got CFS after some info was already uncovered and it had a case definition.  I still get plenty of nonsense responses from people, but at least my knowledge of it doesn't get confused by their lack of knowledge.  (I had a women the other day ask me "when did I start taking responsibility for my illness?".  I don't think she could make sense of my answer - "I called the doctor the next day."  I'll skip dredging up any of my unfun doctor stories.  It sounds like you could fill in every detail - and then some.  (I got surprisingly lucky early on.)  

I wanted to ask you if you know of any studies on the cinnamon?  Or were you just thinking of the generalized reports that summarize things?  Also, along with the quackwatch.com site, do you know of others - both pro and con - that you like to use?

Hope things are going okay for you as can be all considered.
Thanks for being in touch!
    

[Annie62]

I read what you wrote above concerning all that you have been through with your Crohn's and now the breast cancer.  Good for you for standing up to the arrogant oncologist and fighting for yourself and trusting your instincts/knowledge.  I thought only doctors in America were that rude, but apparently it's universal.  When he said "Well, you're not my wife," you should have told him it was a good thing, too, and thank God for that!  I also have had more than my share of arrogant, nasty, curt and/or wholly dismissive doctors in the past 13 years and I know exactly what it does to one's soul and one's health.  Many (not all) doctors don't like to be questioned or challenged and get all huffy and defensive when a patient dares to ask a question or disagrees with their pronoucements.  I'm glad you have a supportive husband and that you had the strength to dump this guy and get yourself a new doctor.  When someone is sick they don't need to be putting up with this kind of insensitive BS on top of all else that they are dealing with.  

[Annie62]

I read your comment on the other post.  I am sorry I don't have anything to offer with regards to your dad.  I am not a medical person-just a well-read layperson (by necessity in my case).  It sounds like you have checked out (or plan to check out) some good hospitals in the Northeast (Columbia-Presbyterian, Tufts), and I would contact the Mayo in MN and the SF surgeon as well that Lizzie recommended.  Maybe at one of these teaching hospitals they will have a better idea or some new procedure that your local docs aren't aware of yet.  Sometimes that's the case, as hospitals associated with good medical schools are on the forefront of research and new techniques.  Maybe you could go the websites of other good teaching hospitals like Johns Hopkins, whatever hospital is associated with Harvard, Duke, Univ. of PA, Barnes Hospital (Washington Univ.) in St. Louis, etc., if you really want to do some research.  You could look under their gastroenterology depts. and see if you could possibly e-mail someone there and tell them what your father's situation is with the stents causing the pancreatitis and blockage.  Maybe one of the gastroenterologists/surgeons would even be willing to do a phone consult with your dad so he could see if any of these places have any new ideas and are even worth making a trip to.  Good luck to you.

[lizziecee]

Thanks for posting back - hope if you talk to Dr. Rowe he can be of some help. Heather had sufficient medical insurance to go to Mayo,and I did suggest it, but she insisted that Dr. Rowe was the best gastro for her - I must admit he was an angel with her, saw her at 10 mins. notice, but perhaps he knew that her condition was terminal, long before she did. She did live much longer than most people with a malignant pancreatic tumour and I put this down to her exceptional will power.

I am there with you in feeling some medical problems are challenging - to say the least! If I thought I had problems with Crohn's, they were multiplied exponentially when I got breast cancer. The first arrogant, patronising Oncologist I saw after my 2 surgeries, whom I was only referred to by my breast surgeon because I had concurrent problems,and he was the brightest Oncologist for bc,  told me in no uncertain terms that I would die of septicaemia if I continued to take the methotrexate prescribed to keep my Crohn's in remission, along with the FEC chemo for bc. I then asked him what he would do if I had a flare of Crohn's during the 4 months FEC chemo, and he nonchalantly said: "we will deal with that when it happens." I then asked if he had dealt with a patient with concurrent bc and Crohn's and he flippantly replied: "No, but I have dealt with a bc patient who had psoriasis". Well.... I also have psoriasis, and we are not talking apples and apples here. As I was sturggling to decide whether to have chemo or not, I asked what he would do if I was his wife, and he unbelievably said: "Well, you're not my wife!".  AAArgh.....We then had an argument about my associated DCIS, which I had gleaned from my pathology report after the lumpectomy and total axillary removal. No-one had told me I had this alongside an invasive 2 cm invasive ductal tumour and I had to get onto a breast cancer forum to find out what it was. I was absolutely horrified by his attitude to me, because I asked questions I guess. He said DCIS is not cancer, but pre-cancer, as if there is such a thing. I told him I had studied Latin at school and I understood that ductal carcinoma in situ meant:"ductal cancer in place." Just means in simple terms the cancer has not spread out of the ducts.  He was furious with me, I ended up in tears, he stood up from the bed he was sitting on and said: "Do you want to continue this consultation?". No, I certainly did not, and to my husband's utter embarrassment, I walked out. I was incandescent with rage. How my lovely husband of 34 yrs has coped with my health problems I do not know. All I know is, he understands, is always there for me when I am ill, but doesn't really want to talk about the nitty gritties, being an only child he is not really comfortable in sharing emotions.

I almost didn't go through with chemo, even cancelled my first session, although intellectually, I knew I had to have it, since the cancer had already spread to my lymph nodes,and where else  I did not know,  as I could not bear having to see him before each chemo infusion, which is the protocol at my hospital.  I got in touch with my lovely gastro and he said he couldn't intervene as bc was life threatening and Crohn's isn't. Well, I beg to differ there, as I now have a stricture in the small intestine.  I then contacted every conceivable world class hospital I could think of by e-mail, in the UK and USA, including two cancer hospitals in the UK.  Every hospital replied and said they had not dealt with patients with my concurrent diseases, until I got a reply from a specialist IBD hospital in Harrow, England, a professor in IBD and he advised that if I had a flare, the only solution was steroids. Unfortunately I got steroid induced psychosis when dx with bc so this was not an option. That was a terrifying episode for me and my husband and I was nearly sectioned. I really don't know how I came through it when I look back, but I have always thought I have a weak body but a strong mind.

So, I reluctantly went for my first chemo treatment and when I checked in to the Oncology suite I asked the receptionist if I could see any Oncologist other than Dr. K. There was no fuss, no questions asked, which spoke volumes to me about Dr. K.   I was told to wait for 15 mins then I was taken into a private room and saw a lovely young 30ish female GP who only worked one morning a week in the Onc dept. I am not religious at all, but someone was looking out for me that day. She didn't even ask about my problems with Dr. K, just got on with trying to sort me out. She prescribed some nutritional fruit juice which the hospital sent direct to my home, and I lived on 3 cartons a day of these for 4 months. No fun for my husband, having to cook and eat his own meals at the dining table. She also prescribed a small daily dose of dexamethasone, a steroid  very different to the prednisone I had been on for some 30 years, used to quell nausea when having chemo, and this kind of held the Crohn's flare a little, although I had some instances of faecal incontinence in the street, so I stopped going out, except to the hospital for chemo. I lost some 28 lbs during those 4 months, which was alarming. Friends in the USA either sent or brought with them some size 8 clothes for me.

Guess what I am trying to say, with an intractable medical problem, if you persevere enough, one can eventually find a solution. I am completely tenacious about my health, knowing I have what my gastro calls "empirical problems" (had to look that up in a dictionary as I didn't understand the word - my bright husband said: "Liz, it just means there is no precedent for your medical problems and he is flying by the seat of his pants." God bless my husband, who is today 79 yrs old, got all his marbles, although disabled with a walking problem the docs here are saying they have never seen before. He is waiting for a neurology appt after having 2 MRI's on his spine (slight spinal canal stenosis), an angiogram which showed an old blocked artery which the cardiologist said has been taken over by other smaller arteries, and his peripheral vascular disease, after having a stent put in his leg, is not the problem. I do sometimes wonder what either of us have done to get these intractable health problems.

Sorry to have bored you with our health problems, I just wanted to say please go ahead and get other opinions, from Mayo or elsewhere and see if your father's problem can be solved. He should not have to live with bi-monthly ERCP's if there is an alternative.

Keep in touch - my email address is tedark at aol.com.

Kind regards,
Liz.

[Curls]

Thanks so much!!  I'll be in touch with him.  This dealing with medical stuff is so challenging.

Glad you got the help you needed.  A quality doc makes all the difference.  

Talk to you soon,
  Curls

[lizziecee]

Hi Curls - heard this morning from one of Heather's close friends in SF. Heather's favourite gastro (and the only one Heather respected) was Dr. Anderson Rowe. His tel. is 925 901 1303. He practices in San Ramon, CA. I think he is in his early forties, so should be up to date on current practices and meds. Perhaps you could give him a call on behalf of your Dad, explain the situation and see if he can help.

I searched the length and breadth of England when my previous gastro emigrated to New Zealand, and with my GP's help, found a wonderful young gastro who is passionate about IBD. It has made all the difference to my mental well being, as well as physically, to have a gastro who is up to date with Crohn's treatments (he even takes the time twice a year to come to the local Crohn's & Colitis meeting in the evening at the hospital where we are all treated) to bring us up to date on new research, meds. etc. and will answer any questions from the audience, so we all learn.

Good luck,
Liz.