Constipation symptoms

I take Viokase 16 (the number is part of the name) 1 or 2 tablets with snacks, 3-4 with meals. They look like large vitamins…sometimes, I will split up the meal dose, and take some at the beginning, and two around the middle of the meal. LOL…when I am actually EATING, they are miracle workers!

To the jealous pizza person…sometimes, if it is not a greasy pan crust, try peeling off the cheese layer and just eat the crust and the sauce…it’s better than you might think!

EVERYONE with CP should ask their docs about Sandostatin…it has changed my life. It shuts your pancreas down, so to speak, so you must take enzymes, but it allows a break in that cycle of inflammation, scarring, blockage, etc. Flare ups still happen, but much less frequently, and weight stabilizes. The only downside is that it doesn’t work forever…but, if you take a break for a year or so, you can try again. I issue that disclaimer because I am on the downside of its effectiveness, but it has been a much better 2 years than I’ve had in a long time.

Sorry I haven’t been on, I had a bad flare up…was in hospital for 8 days. The good news, though, is that the plan I worked out with my PCP and my new specialist worked perfectly. Except for the triage nurse who told me…and I swear I am not making this up…“Your pain is the WRONG PLACE for pancreatitis!” (You all know, the spear on the right side of your spine, the punch under your left rib…Then this ahem…educated individual informed ME that my pancreas was on the RIGHT side of my abdomen…I just rolled my eyes, unfortunately used to such idiocy. My mother, however, called her out and put her right in her place by telling her “Really? The specialist at IU found her pancreas on the LEFT side…maybe you should give them a call and explain your diagnosis.” If I hadn’t been dying of pain, I would’ve died from laughter…GO MOM!

I also think finding the best way for you to deal with stress is very important, too…Pray, sing, watch a movie, call a friend, swear into a pillow, watch a sunset…take a walk. Take a day off from thinking about whatever is stressing you. Call an old friend or write a letter. Just do something sweet for someone else…even if it something small. Say thank you to the friends who have helped you, hug the spouse who has held you or cleaned up after you. But somehow, every day, take a few minutes to focus on something good and positive. This disease is a tough one, it really really is, and only a very few of us know the pain. It is so interesting to me that very little actual complaining goes on here; but so much love and encouragement and support. Frustration I hear sometimes, but very little whining. I think CP weeds out the whiners pretty quickly.

Anyse, was it you who said they don’t believe your description of pain levels because you are still cheerful and calm? I am the same way…my BP actually goes down…way down the more pain I am in, because I have learned to let go…anxiety, complaining, fear,rudeness…ALL amount to nothing. They don’t encourage people to help me…thrashing about, screaming or whatever…doesn’t decrease my pain at all…it increases it, and LESSENS my ability to inform my caregivers about the problem, and to focus my energy on getting better. Sure, sometimes a nurse or a doctor is stupid or unkind and needs a slap…but being calm, in the long run, serves me better…LOL I’ll get them later, when I’m stronger and more creative in my revenge. (just kidding)
Heh heh heh.

Susan in Indiana

Susan:

Your posting was very helpful. I am going to ask my doctor about Viokase. That might be better than the Creon. It’s embarrassing to have so much gas. Does Viokase do that too? I hope you are better and don’t have
to return to the er soon. You said you are in Indiana. Where? I am from Fort Wayne.

Thanks, EllenC

Ellen,

LOL on the gas…not so much, really. Just if I eat too much broccoli. My best bet against the constipation beast is raisin bran, wheat bran, grapenuts, etc…with Miralax sprinkled in. It seems to help things from getting bad. I also take two stool softener caplets (generic, from Costco) in the AM and two more at bedtime.
I’m right down the Interstate, in Anderson. There is a great group of docs at IU that specialize in pancreatitis

Susan

Thanks, Susan.

I only take one stool softener a day. Maybe taking more will help with the gas. I have been to Dr. Lehman at IU in Indy, but not to any others down there. Any suggestions for others there who are good? Right now I don’t think I need to see anyone, but you never know!

Ellen

Hello, Everyone.

I am in the Louisville, Kentucky area, and need a good PM Dr. The one I am seeing now has told me I need to cut back on my meds, Hydrocodone10-325, 4 x a day. This dosage is not very effective and after I asked for an increase, he said there is no reason for one because my last 2 scans showed no change, and I needed to start cutting back. My last scan in August showed another pseudocyst developing and calcifacation throughout my pancreas.

I don’t beleive this Dr. understands that CP is a PROGRESSIVE disease. I would really, really like to find a PM Dr. in my area who understands Pancreatitis.

I know I am lucky to be able to function on such a low dose of meds, compared to most CP patients, but all I hear from this Dr. is that I am too young to be on narcotics full time. I am 38. Cutting back is not an option, I need to find a new Dr. FAST!! Any help would be greatly appreciated.

Hope everyone is having a pain free evening.

Cindy

Ellen,

Of the group at IU, I have heard that Dr. Lehman, Dr. Sherman and Dr Fogel are the best. They are nationally known Pancreatic Specialists…Dr. Fogel is my doc, and I love him. He is so reasonable, and gentle, and honest. He has never made me feel rushed or ashamed of my pain…He works well with my PCP, and was so helpful straightening out my PCP’s misunderstanding of CP and just how the flare ups happen, and the nature and severity of the pain.

He was the doc that did my ERCP’s that diagnosed my CP after 10 yrs of misdiagnosis, but it is just recently that I even realized that he could be my treating GI…not just a consulting surgeon. His compassion truly answered prayers. I just had a flare up, and because of his help, my PCP was able to properly treat me near home, with a PCA morphine pump, fluids, (promptly, not after days of waiting) and now that my PCP understands and knows to trust what I am telling him, I am back on my treatment team at last! THANK YOU DR. FOGEL AND DR HILL (my PCP)

As to the gas, and constipation, the biggest things that can fight it, are yogurt, whole grain cereals, cutting back or eliminating Soda, Caffeine and Artificial Sweeteners. I have also been drinking some gentle herbal teas, and that seems to help a little, as well. Lots and Lots and LOTS of water…did I mention staying hydrated??? LOL Also, just a thought…does it make a difference if you have eaten dairy? If you are more gassy after dairy products, try some Lactaid tablets or their generic version…they help digest the milk lactose. My husband needs them ( I mean NEEdS them! LOL)

What wonderful things we find to discuss here…LOLROFL. Gas, Pain, Constipation, bloating, narcotics, Mean doctors, stupid nurses, (and nice ones)

Just for a breath of non-gassy non CP air…LOL…I AM THINKING OF SMILES, SUNSHINE AND DAISIES. I PASS THIS ON…WHAT ARE MY FRIENDS FAVORITE THINGS?

Love,
Susan

Thank you for opening this topic up, I was begining to think I was the only one who had this problem with constipation. From everything I have read about this they talk about diarrhea but not constipation. I have recently started recovering from the latest round of hospitalization and it was a big problem. My doctor had me take Milk of Magnesia everyday for about a week to get my bowels moving again. After that I continued to have problems despite taking fibersure(2tblsp twice a day), digestive advantage for IBS and drinking lots of fluids I was still having problems. He suggested switching the digestive advantage to dannon activa every day also told me that it was ok to continue to take the Milk of Magnesia(MOM) everyday. I cut the dose of MOM down to 2tblsp and drink a full glass of water immediately afterwards. I only take 4tblsp when it has been a few days without results. I have just started this new regimen but already have seen results. MOM is safe and with very little cramping, in fact I have seen it used on patients that are in multiple organ failure and the doctors refuse to prescribe anything else due it being so gentle on the system. My doctor assured me that it was ok to take it everyday. May God bless you and your loved ones.

Thank you so much for the information, I have been dealing with constipation for about 2 months, the doctors say it’s from the pain meds. and to drink lots of water, I have tried so many things that my stomach hurts from being bloated-NOT FUN as you can probably relate…

Big Hugs and Love to you~~~~~~~Mrs Barb :slight_smile: