Brought home
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And added note: I do not have UC, but microscopic colitis. My mother had UC and it is heriatry (sp?) meaning that if one of your parents had it you will probably get it too.
Mom was actually vomiting blood and her stool was solid blood as well. She was in her 40’s at the time. I was also in my 40’s when my issues started. And I know all about the bathrooms too! One of the first things I scope out when I go into a store….WHERE are the bathrooms – cause with colitis when you gotta go, you gotta go!
Lol
MargaretMargaret, thanks, this was very helpful. Oddly I went off the Asacol Friday and yesterday he put me back on and I have more junk again!!! It was leaving when I went off. I always tell my Docs that everything works the opposite on me. Tomorrow morning is my Biopsy on the nodule they found on the thyroid. Not worried about what may be, I am sure it is nothing, just getting a little nervous about the biopsy itself. I am in the thinking mode about the Lake House. Will let you know down the road as I feel better. I am even thinking you guys could over night 1 night as it is a long ride for you. Ideally it would be July. Will let you know. Not a lot to do there except relax but Teddy and I had good times there. I saw that Shar is from WI and keep forgetting to ask her where!
Lainy: I’m up for a get together! That would be awesome! I have car and can travel! LOL. The Asacol worked well for me in the beginning. I had to take 2 tablets 3 times a day for about 4-5 months. Then they put me on PRN (As needed) only when I had a flare up. That was about 12 years ago. After my last bout with it where I experienced it severely, I was back to taking the Asacol 2 tabs, 3 times a day and it was NOT helping, it seemed to be making it worse.
So I got scheduled for a colonoscopy which, guess what, came back as NORMAL, he did take 2 -3 bisopy’s and those came back minimal for colitis and he explained that with long time use of Asacol, it can reverse the effects and actually make the colitis symptoms WORSE instead of helping…..which is exactly what was happening to me.
He told me to stop taking it and use immoudiam AD or anyother OTC for the symptoms. When I have a flare up I take 2 and if it continues, I’ll take a 3rd one 4 hours later. I’ve never had to take more than 3 in a day and have only had 2 or 3 incidents in the past 4 months.
You just let me know when you plan to be at your friends house, I could even pick Darla up and we could drive there together! I’d love to meet both of you ‘caretakers’ in person!
Hugs,
MargaretMargaret-
So sorry to hear about your accident. I wish you a speedy recovery.
Lainy- Hope you will be feeling better soon with your UC.
Take care ladies. I love you both!!
-Pam
Oh, Margaret, I am so sorry about your fall! Yikes! Going to be on Prendisone another 2 weeks then wean off I hope. Yesterday I went to choir rehearsal and a friend of ours took one look at my cheeks and asked me if I was gathering something for the winter!!! I actually laughed and said no but its not as painful as plastic surgery!!! Can’t wait to see the wrinkles return! There are 2 kinds of Asacol and he is putting me on the cheaper one now but gave me lots of samples. It has seemed to work but who knows if it is that or the Prendisone. He said I will be on the Asacol forever. We shall see, he saw my innerds but I know them better than he does and I know you know what I mean. Funny…I can never think of the word Asacol unless I think of what it sounds like first. You got it! A—ole! Sorry guys but it fits. I sure hope you are feeling better. ENOUGH already! I agree about 2012 so far and am hoping it all turns around. I am also thinking of going in July to my friend’s Lake house for 2 weeks on Wabasee Lake, near Wind Lake. Pperhaps you, Darla and I could get together. Something to think about.
Lainy: My doc just took me OFF Asacol! And it IS very expensive, I was paying $900 a month for my script and in the end it was making my colitis worse. Now I use an over the counter med, immoudiam AD or any other generiac anti-diarreal medication. I take 2 tabs at the first sign of loose stools, and if it continues I take another one pill, etc, but no more than 4 in 24 hours. Works great for me so far. Maybe you should try that route!
Hugs,
MargaretP.S. I fell on the ice on sunday and this time broke my left wrist – remember last year on 1/1/2011 I fell off a folding chair and broke the right wrist? Now 2012 is starting out the same way….I can only guess what is in store for me this year, I just want to fast forward to 2013!
Byron, I now have extreme empathy for UC patients. My GI told me it is unusual to see such a severe case in an older person. But then I never do anything in a normal way. I have thought of writing a book on the best bathrooms to use across the USA!
Too funny, Lainy. Unfortunately, I know what you are going through with U.C.
I look back and wonder how I ever made it through (sanity wise). My 20’s and 30’s are practically defined by my ability to memorize where all of the restrooms were wherever I went. Maybe that trial prepared me for the new trial.Thanks, Byron. I do not eat anything with much sugar at all as I am on insulin. Of course the Prednisone I have been on has taken care of that. Talk about Stock Market High! First prioity right now is ulcerated colitis. Then will get everything else back under control. Ya, know how one thing fights another. So, I am told I am in my Golden Years however they are slightly tarnished! Got to try a new polish. Guess I am blessed as I have never had any of this until about 5 years ago! My dad lived to be 93 and my Mom 94…never sick. Mmmmm Heck my Mom had a boyfriend at 92!!!! And then ….sadly they couldn’t remember each other! True….
Lainy,
The biggest creators of triglycerides in the blood are sugars, not fats. Triglycerides then go on to manufacture cholesterols. I used to be a “pop-aholic”. I had triglyceride levels that would make the stock market proud. I quit the “sugar dosing” and the levels dropped a long long ways.
They prescribed statins to me following my stroke……..even though my cholesterol levels were not high. They said it would help prevent further strokes. I’m glad to be off of them.
Unfortunately, I have been on Statin drugs for 5 years now and take 1200 mg of Fish oil as well and if I don’t take my statins, my cholestrol and Tri Glycerides go through the roof. Guess it depends on one’s system. I don’t eat anything fat or dairy either. Interesting point about Doctors getting kickbacks on RX. I once asked someone who would know and they said not money rewards but they do get perks like trips. I have been fighting this Colitis thing and my GI ordered a drug called Asacol to help heal the bowel. He gave me enough for a month supply and I went Friday to order the RX for the first time. My Insurance company turned it down and the Pharmacy wanted $722 for a month supply of a tummy healer! Needless to say I didn’t get it but do see the GI tomorrow! What a racket, yes?
My husband Tom was on ‘Statin’ drugs for years and it did nothing to control his cholesterol levels. After his alk phosphate levels jumped, his doc took him off the ‘statin’ drug and told him to take 2 1,000 mg fish oil pills 2x a day. Within 3 months his cholesterol level was down to 159 (normal).
When I questioned the doctor why if fish oil worked so well to control the cholesterol, why a doctor would prescribe a ‘statin’ drug that is so hard on the liver….he basically had no answer. I think they get a kickback from the drug companies based on how many patients they can get onto a ‘statin’ drug.
During the three year 8 months that Tom battled CC, he took his fish oil pills every day and his cholesteral levels were completely normal during that entire time. Before when on the ‘statin’ drugs they ranged anywhere from 300 – 600!
I now swear by fish oil and take it myself daily and I don’t have high cholesteral. It can’t hurt and I know for a fact that ‘statin’ drugs are very hard on the liver that is why they do the liver function tests every three months for any person on a ‘statin’ drug.
I am not a medical professional, and my analogy is purely based upon what I saw with my husbands cholesteral levels after he started on fish oil
Margaret
Thanks, PCL, for this statement. I could not agree more. FIND A REASON to get a scan.
After my stroke in November, Doctors immediately put me on statins to help prevent recurrence. Well, First of January, my liver enzymes all of a sudden jumped way up. Oncologist took me off of them and will re-check liver enzymes this Friday to see if the levels went down. I sure hope so.
Hi, Nancy,
I agree with Margaret that once you have this cancer;it is very difficult not to think about recurrence even if you had clean margin>1cm like me;or had liver transplant like Trevor on this message board.As we both had recurrence recently.
I do not drink alcohol,I do not smoke ; However,I do strongly suggest not to take statins for cholesterol problems. Yes,there are great benefits from the statins but liver enzymes elevation are the problems since DAY 1 when statins were introduced.and that is why it requires patients who are on statins need to check liver enzymes regularly;or at least in the first 6month period.
The KEY to understand how to control or prevent recurrence is to eliminate or discover what cause the INFLAMMATORY process to occur in the liver; is the diet that induce the inflammation? is the micro-environment in the cell level cause changes and turn our liver or bile duct cells into cancer cells because the drugs or the food we take?
Liver is the only organ that can regenerate itself;and it is also an organ to filter and clean the toxins and impurities in our blood like a garbage disposal.;to decrease the impurities and toxins to pass through the liver may be a way to decrease the chances of causing the inflammation to the liver and therefore less the chance to have this cancer or the recurrence that will follow. It only takes one cancer cell to regenerate along with the good cells to cause recurrence.
To answer your question of early detection of this cancer,the following is my observation.
There were no symptoms(or warning signs) for me . base on my experiences, I will recommend to those no matter how young or old you are, if you had medical history of indigestion; acid reflux problems or heartburn (ie; you are taking Tagamet ,Mylanta or Peptobismol. Maalox;Nexium,Pepcid, Prilosec OTC off and on for that purpose) ;easy to get tired for no reason; dull back pain off and on;weight loss of no reason(>4-5lbs over a couple months);on statins for quite a while or you are overweight in your age and gender group.
Try to get a CAT scan Rx from the GP or find a reason to go to ER to have the CAT SCAN OF CHEST,ABDOMEN AND PELVIS done, or at least the ultrasound of the liver done . this is the ONLY way to find out this cancer BEFORE symptoms like dark urine,clay color stool or jaundice ,yellowish eyes and skin,itching etc.shows up.When symptoms show up, normally speaking,the cancer will be in the late stage of the game and the choice of treatment is very limited.
BTW,I am only a patient and not a doctor .
God bless.
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