Secondary CP problems

Hello again,

Thank you for sharing information with me regarding the smoking relation to CP. I read your other post and I was wondering if your secondary problem splenic vein thrombosis is related to the CP. Does that mean you have a lot of unsafe veins in your spleen, and if so is this from drinking alcohol? My father died of cirrosis of the liver, but before that happened he had already stopped the drinking for more than twenty years after his diagnosis. He fell off the roof one day, broke three ribs and ruptured his spleen. He spent well over a month in the hospital. After he was released to come home, he vomitted a large amount of blood and nearly died. It came up in the form of a very large bloodclot. I don't know whether the blood came from the ruptured spleen or if he had a bleeding ulcer like the doctor's said. What would be your take on this? That's only if you do not mind me asking. I also wonder what US stands for at the end of your last question.

I have a hereditary condition called factor 5 leiden, which makes me prone to clotting.  From my research, , splenic vein thrombosis is also related to CP, so the two probably go hand in hand, while the hereditary condition just made me more succeptible.  I am on'y 37, freshly 35 at diagnosis, and I don't drink heavily, but I am a smoker, especially when I feel okay, but am afraid to eat, because eating often causes a lot of pain.  My liver functions always come back fine, though there have been at least 8 instances of elevated amylase and lipase.  US is ultrasound, sorry I am from the US (United States)  The reason I mention smoking is because I had a stent placed in June, and the Dr noticed a lot of progressive damage, in spite of not drinking.  I am not a heavy smoker, but I do enjoy something especially when I can't eat.  I often only take two drags, and save it.

Oh I see. Thank you for taking time out to explain this to me. You are awfully young to have so much on you to deal with and I am sorry to you for that. I didn't know that CP or your secondary problem could be heriditary. So you know your weight loss is related to not eating regularly? What if you eat the low fat diet they posted about in the other forums, and smaller portions? Does this make a difference at all? Does the pain only come after a meal? If so, what is the duration? Do it cause you to become immobile?

0 percent of the time, I gamble if I am feeling okay.  It is very difficult to maintain the diet, eapecially when I like flavor, and I have a family I am also cooking for.  Many times, I cook them dinner, and take a small bite just because I want to know it tastes well, and then feel pain.  Yes, I ALWAYS have to do the smaller meals, as soon as digestion begins, I feel like I ate a holiday meal, even if it was a half a salad plate.  I am 5' 3", 98 lbs, down 15 since diagnosis.  It varies, but using skim milk, I have tried making myself milkshakes with yogurt, they say the probiotics may help..  also take a digestive enzyme, Creon, but do not notice a significance.

 

Sorry, I meant to say 10 percent of the time I gamble, hoping to taste delicious food with no pain.

 

Duration can be hours to days.  I have pain medication to take as needed, usually helps within an hour.

And yes, until pain lets up, I cannot think about anything besides the pain.  I have had two unmedicated c-sections.  The pain does not compare.

 

Which pain meds do you take Kerry? I also get pain from tummy upsets which can be as severe as pancreas pain! I also have diabetes and that can cause your whole digestive system to slow down a great deal which is called delayed gastric emptying. High amounts of opiate pain relief can cause severe constipation which if left too long, can cause excruciating pain and in very severe cases, cause you to vomit faeces! I am sorry for the not so nice descriptions but I feel that it is important that these things are talked about openly as they are not only very painful and upsetting but also potentially dangerous. 

When I have to take large doses of morphine, I also take senna and lactulose, which helps you go to the toilet. I also have to have enemas to hand in case I get very blocked up. Sometimes, using an enema is the only way to stop the pain. I am also writing a food diary as I need to try and work out which types of food are upsetting my stomach the most. I didn't get many problems with that side of things until quite recently but I have also lost lots of weight (I am now just over 8 stone and 6 foot 2 inches tall!) I used to be nearly 13 stone a few years ago. 

Do you take Creon whenever you eat, Kerry? Sorry about the long reply! 

Regards, 

Pete 

I too get lower abdominal pain. Along with constant under ribcage and back pain and pain in chest. Just a few ideas for you. I make a soup called Beiler broth ( from a nutritionally minded Dr  back in the 60's who was way ahead of his time).. It is zucchini, green beans, celery, parsley, and I add garlic and onion (but you dont have to)..and himalayan pink salt.  I never measure, but theres about twice as much zuc as anything else. Put in a large pot (minus the parlsey) and add water almost to cover veggies. Cook till almost tender, but dont overcook. Blend all with fresh uncooked parsley. Blend to your liking (add less water if you like it thick).. I blend really well.. I love this soup. We call it green soup. I can eat this for days, and its the ONLY thing that I feel I can eat w/o too much pain. I freeze after it cools so its always fresh. I would try this and nothing else for a few days then introduce food. I can NOT eat any dairy, even yogurt. But probiotics are good. Get tested for parasites, or research, and  take an anti parasite product (health food store). I would rec a liquid B complex, and liquid minerals.

Ok having said that, have you ever tried Xanax?

Its the only thing that I notice a significant difference with.. I take one half of the lowest does (2.5) just about 3 times a week, cause I am worried that it will stop working. I look so forward to the little bit of relief it gives me. I take in eve. I seem to be able to eat more than usual, and SLEEP, and wake up in less pain. Probably has to do with a sphincter issue,and relaxing something in there. Who knows.

Carry on all you CP people!!! Isn't this fun? Nobody gets it huh?

blessings to all of you.

Pete, I take Percocet (oxycodone).  I do take the Creon with meals and snacks but I have not noticed that it makes a difference.  I also cannot remember when the last time a meal was not the size of a snack, or a snack was not not just simply a bite or taste of something.  I am afraid to eat more.

Kerry sorry forgot, regarding food, little & often & I & my friends in Bristol, England been taken to Juice-ing & found Nutri Bullet to be the best to breakdown seeds.  Just Google & you'll find lots of help out there & what helps, works & what does not.. :-)