Does it get better?

Hope eveyone is hanging in there. I been suffering pretty bad the last 2 months. Needing to know if i will ever get better. Thd doc’s do not know. I am going on a 1 1/2 yrs. Is there any hope that there is a cure for this. Feeling depressed and frustrated. My weight is down to 95lbs. Did not think it could get this bad. I do not mean to complain but i know you guys understand because you live it everyday like me. Looks like i will be getting another ERCP (hoping to hold off until after the holidays).

Dura hope your feeling better glad your home from the hospital.

Has any one had any luck where they get to a point that this CP is managable. I have my 20 yr High School reunion this weekend and just hoping i will not be to sick to attend.

Sorry for complaining i am just in so much pain and tired of all this. WILL IT EVER END!!!

Lisa

Lisa,

I am sad to hear of your struggle. This disease is so overwhelming!! I will be praying for you. Lord God, would you please give Lisa a time of rest and no pain. You are the God of healing. You are the God of love and compassion. I ask that You would have compassion on Lisa. You are the God of hope. Give Lisa hope. But most of all God would you give your initimate knowledge of Lisa’s body to her doctors? Would you allow them to have the knowledge that you have so that they can treat her and give her some relief. But most of all Lord would you heal her and the many others that suffer with this disease. You are a God of miracles and I believe that You can bring healing. We ask that Your perfect will be done. In Jesus name. Amen

Vonne

Lisa,

I would never ask anyone to gear their prospects of their future! I
am into my 13th year now with this disease and do not see too many
prospects for a truly “healthy” tomorrow.

I am on TPN now and things are just getting worse. I am depressed and
so discouraged by my healthcare system (HMO-Health Maintenance
Organization, should be applied to the sick as a Sick Maintenance
Organization SMO because that IS my health!). They transferred me out
of home health care for the TPN, blood draws, and bandage changing.
Now, I have to go in every week to have these things done. My
diabetes is way out of control and my weight has gone up 20 lbs.
since August 21! If I am adding on weight, one would think that I am
getting too much food because the body will store the remaining food
as fat. Well, they want me to also eat while on TPN “to keep my
stomach functioning properly.” As of yesterday, I have now stopped
eating anything whatsoever from now on until they modify my TPN to a
1200 calorie level rather than the 2000 level that they have me on
now. I am also thinking of taking things into my own hands and just
using the TPN for only 12 hours each day (instead of the 24 hour/day
that I am on now). I am sick of all of this! I am physically better
but no one listens to me that the TPN NEEDS to be reduced! I was
living on only around 500 calories before the TPN and was,
unfortunately starving to death. Now, they are fattening me like a
goose liver and preparing me to be the pate on someone’s plate
tomorrow! Some may think that having more strength and being somewhat
more healthy would be a wonderful thing. Unfortunately, it can also
be the same nightmare of our illness if no one listens to you and
helps you to “do” better with this “newfound” health. Damned if you
do and damned if you don’t.

Anyse

Yes Teresa, I will share with you what I know about pancreas divisum. Pancreas Divisum is an abnormality of the pancreatic ducts that is present at birth. It happens when the two ducts that form in utero in the embryo fail to fuse and form one main pancreatic duct that joins with the common bile duct. Many people with Pancreas Divisum have no symptoms while others experience severe abdominal pain, nausea, vomiting and have episodes of pancreatitis. It took several years for me to be correctly diagnosed and by the time I was diagnosed, I had severe damage to the pancreas, as well as the surrounding areas including the common bile duct, pancreatic ducts and related areas. I have had stents in all of the ducts at various times, have had sphincterotomies and other related procedures. I hope this is what you are looking for, if not, please feel free to tell me more about what you would like to know and I shall do my best to help you. Hope you all are having a good day. Jamie

Anyse

I need to caution you on playing with your TPN at home. The ingredients are designed based on labs and due to high dextrose concentrations, your diabetes can be stressed to the max if you do not taper on/off correctly. Have you spoken with a nutritionist lately? 500 kcal is not enough to sustain health for a daily intake.
I wish you luck.

Vonnie

That was a beautiful prayer and I would like to send the same back to you…

Lisa

My prayers go out to you as well, Vonnie could not have said it any better. Bless you both and all on CarePlace. As so eloquently put on “High School Musical”, “WE’RE ALL IN THIS TOGETHER” and together, we can make it.

Thank you for your prayers…it made my day
Lisa-

MacBeth,

I am following the instructions of my infusion pharmacist and doctor
as we discussed with the dietician what needs to be done. Next week
(because my doctor is on vacation this week), we are dropping the
caloric intake from TPN to 1200 calories and will also maintain the 2
litre size and 24 hour infusion.

I am not “feeling” right of late and we think it is because my
Cymbalta has been irregular at best over the past few months as I did
not take it so many times due to NPO status and, now, none because
they did not refill my “0” prescription that I requested 3 weeks ago.
We talked about it last night and she said that I have been at a high
level of “nasty” and very “demeaning” communications with her for the
past 3 weeks. I should get my script tomorrow as it was mailed
yesterday from the pharmacy.

I hoped that, when I got on TPN, that all would be roses and it has
turned out to be the fleur d’ morte. I am still tired, can barely
walk around at all as my vertigo is probably worse, my diabetes is
worse since going on TPN (spent 11 days in hospital just to try to
titrate myself as it was too “dangerous” to do alone), I feel like
crap al of the time, and the nausea is horrendous as well as a new
"visitor" that I have not had for many years: indigestion, horrible,
painful indigestion. However, my pain is more manageable as I noe
have some strength to deal with that better and don’t seem to need
any breakthrough pain medications beyond the 200 mcg of Fentanyl.

I am usually very clear headed on these things and, unfortunately, I
have not been so lately. I feel more confused, scared to
petrification, and more severely depressed. Oh well, got to take the
good with the bad, I guess.

Take care and thank you for your concern.

Anyse

Hello To All… In reply to “does it get better”, I would like to say that for me it has become more manageable and I am still able to maintain my independence. It is a challenge and I can relate to many of the feelings that have been expressed. Many times all we as patients “hear” about are the things that do not go well…people that have an attack and recover, require minimal treatment and are able to go on with their lives usually remain faceless. I did meet one young lady - about 24-25 - that had the same condition I have which is pancreas divisum. I did not want to tell her too much about my experience because she had one attack, had a stent placed and to date has required no further treatment. She works full-time, has had two children since the attack and has had no further problems. I thought it was interesting that she had very minimal damage to the pancreas. I know that she is thankful for that. I was happy for her because this is not something I would wish for anyone else to have…even though there have been times in my life when I was pain-free, I can no longer remember those times. So, it is very depressing and even though I considered myself a positive person always looking for the good and wanting to lift people up - it is tough at times. We all have different experiences and respond in our own unique way. So, I would say that YES, a loud YES, it does get better for some moments, some days and you become more able to manage this disease process. May God continue to bless each one of you - this group has helped me more than you shall ever know. Thanks you so very much.

Can you tell me more about pancreas divisum? That was mentioned to me by the pancreatic specialist.

Thanks

Teresa

Hey, Lisa,

Just read your posts and thought I'd reply.

I was diagnosed with accute severe pancreatitis last December (read my story if you'd like), and after a long four and a half month recouperation, had my gall bladder removed and an EUS to drain a very large pseudocyst which developed on the tail of my pancreas about four months post-attack. Anyway, it was an awful experience -- extreamly painful, scary, thinking I was going to die and never get better, and, well, you know -- all the things that run through our head when we're in the throws of an attack. The good news is (for me), after the two procedures, I've returned to a normal life -- pain free, working, eathing anything I want (including pizza) and seem to be one of the lucky ones to have escaped the true ravages of our disease.

I just flew a three-day London trip with a woman who has CP, diagnosed about 8 years ago, and we discussed my case a lot. She scared me to death saying it was just a matter of time before I get another attack, but I WILL have another one andto PLAN ON IT!! She also said that having the gall bladder removed was nothing -- that chances are, it (the gall bladder) was non-related to the disease and most doctor's see gall bladder surgery as the band-aid to fix things temporarily, since most times patients have gall stones -- which I didn't. So, that tape runs in my head all the time now, but I must replace it with more constructive, productive energy, or she's right! -- I WILL HAVE ANOTHER ATTACK!

It's been over six months and I feel wonderful. No pain, just slight pressure under my left rib where the pseudocyst resides. My doctor's at Duke are very conservative in their approach to my case, since I've never been sick a day in my life and have no family history of the disease. They think my case is very perculiar, but more than likely, I threw a stone, it got lodged in a pancreatic duct, and the rest is history.  They also think rather than be aggressive with the cyst and do an open surgery, it perhaps  may take longer for the it to spontaneously resolve because of it's size, but we'll just keep an eye on it every three months and go from there. I've also been instructed not to enter and Rodeo's or play tackle football, which I though hilarious! Otherwise, I can do anything I want, but listen to my body.  So far, so good.  KNOCK WOOD!!!  :) 

Suffice to say again, in my experience with our disease, it can, and does get better!  I'm a living testimonial!

I keep a very positive attitude, stay focused on living each second as it presents and keep negative thoughts OUT of my life! Even the negative thoughts from co-workers! Nobody knows what tomorrow will bring, or for that matter, an hour from now. Try to keep your chin up, think good healthy thoughts, take each minute as it comes, stay focused, think clearly and do the best you can to stay in the moment and live one second at a time, as it's presented.

 It's tough -- very tough, but the biggest healer we have in the universe sits on top of our shoulders! I'm thinking about you, sending healthy wishes and pulling for you to get through this!

May tomorrow be better than today, and every tomorrow better than it's yesterday!

Best,

Flyboy73

YIKES!

Just read back through my post and am APPALLED at the typo's!

Sorry everybody! My brain works much faster than these tired fingers!   :)

Best,

Flyboy73

Flyboy,
thanks for the email. I am going back to see yet another pain Doc. and
possibly yet another ERCP. I think i need to start living 1day at a time
with this CP. for some reason this is happening to me (all of us) and we
need to look at life and appreciate life 1 day at a time. On the days i am
not so sick spending a day with my children is the best day.
I am jealous that u can eat PIZZA!!!

Thanks again
Lisa

Flyboy 73

Don’t worry about typos…that is what spellcheck is for LOL

There is NO guarantee that you will have another attack. Live life as if you won’t (but no Rodeos for you my friend) but I caution you to be careful with what you eat. That is probably the one thing that you CAN control to prevent another attack.

Thank you for the words of encouragement about returning to normal life. We all strive for this and, sure enough, it is possible.

Take care and please do not try out for the Dallas Cowboys!

Teresa

You all are so sweet! No Dallas Cowboy tryouts here! Too funny!

Lisa, be careful with the ERCP thing, okay. Really do your research and find out if it is indeed the best way to go, since a lot of people have set-back as a result of having them done.  Try to read some of the posts here from members whom have had them done, weigh your options, then make an informed decision with your medical team.  They wanted to do one on me initially, but I was very resistant and was emphatic about not wanting to get worse, or have the procedure precipitate an attack, so we decided to do an EUS for pseudocyst drainage and see what happens.  It was a success and they drained it over 80% with no complications, which was back in June.

Sometimes doctor's are quick to rush into an ERCP because it's one of the only known procedures for our disease which is less invasive than open surgery, which we all want to avoid at all costs!  After all, who would choose to have their guts sliced open if it's not absolutely necessary or our lives were in jeopardy! 

I certainly don't know the specifics of your situation, so I'm just throwing my opinion out there for what it is.  -- an opinion!

Take good care, stay focused, think positively, be informed and  take each second as it comes! 

Here's to today being pain-free and every tomorrow better than the day before!

Twenty-four, thirty-two, seventy-eight!  HIKE!  :)

Flyboy73

Flyboy,

this would be my 4th ERCP(last one they cut the muscle’s w/ stint to open up the ducts)…it only worked for about 2 months (not cured; but less pain and nausea). what other options do we have? Enzymes are not that helpful, low fat diet is a joke; i am under the 100lb mark.

I just do not know what to do
I feel completely helpless
Lisa

I had 3 acute attacks in one year. This developed into chronic pancreatitis for me. But while this year has been a bad one, last year was a good one. I wasn’t hospitalized even once last year.

While it took me some time to recover from my first acute attacks (my lipase went above 10,000 each time) things did get better.

Hang tough. It is frustrating to be sick and not know day to day what it is going to be like. But give yourself time.

As to whether it gets better, I think it depends on what you consider as “better”. Will it get all better? No. Likely it will never get all better.
But if by better you mean increments, small pieces or aspects then the answer is yes. I know when I first began my waltz with this disorder, the thought that no, it will never get better left me completely hopeless and questioning 'why bother". But I can see aspects that have gotten better. I am not “all better” but in many ways am better than I was a year ago, two years ago.
So hold hope that as time passes, some things will get better.

I think this horrible disease is so very different for every single person. My daughter has hereditary CP, underwent many ERCPs and just had the Puestow. Will she ever be pain free? Don’t know but pray like hell she will. I do know it not only affects your body, but your mind as well. And has changed her life completely. She no longer has that care free feeling, she worries constantly(and she’s only19). and fears more about tomorrow than embraces it.
My sister-in-law (age 50) started getting attacks at age 3, they had no idea what she had, was only given pain meds and kept in the hospital for a month at a time till ALL pain was gone. They didn’t find out what she had till she turned 14. Many, many hospital stays in between. But they kept the same regiment for her. The wonderful thing for her was it completely stopped at age 16. She is a doctor now and feels for her the best treatment was no treatment. In other words, no surgeries. And no episodes since the age of 16. So, everyone is different-hers just went away. Unfortunately, her daughter has it now, but under control for her too.
So please don’t give up hope that you can be pain free-I’ve lived this disease with many family members-many surgeries, many hundreds of hospital stays and I still refuse to believe it won’t get better.
I’ve even tried to get doctors to do a transplant for my daughter from me but they said her genetic disp. would just carry over.
I pray that the magic pill for pancreatitis will be discovered very soon!!!
Take care,
Terri

Terri,

Thanks, I will not give up, i will keep fighting this… Hey if your child has the courage to fight we all should!!

Lisa