CONSTIPATION--problem with so many of our drugs
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leenso, the very happy person is Lily. I was one of her cheerleaders
Oh, I'm one of those people that have time distortion with the change at the first of each year. I read your rads in your bio and thought you just got done. They're several us that cheer folks on. Judi, Minus Two and I'm thinking Lily will stick around. I think she bonded with us b/c of her binding. Others pop in too as they see something they can help with. Many minds working together can really get things moving Would love to have you watch this thread and jump in when needed. I'm a retired nurse. My retired mission is to help where I can.0 -
SAS you are so funny, I am just hoping its not a one off............your pictures are fantastic and really capture the emotion!!!
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Well Lily, I'm so happy that you are safe. It was a tough go. I was so worried that you were going to have a blow out. So, today we are all happy campers
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Well Doctor has told me I am not allowed to carry on with Movicol (Miralax) as it is not for every day or regular use...........instead I have been given fibre drinks..........to take twice a day then once a day, but my problem is NOT lack of fibre or lack of wáter as I explained..............
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I understand exactly what you're saying, Lily55. I've had a constant battle with constipation ever since I started Arimidex over 4 years ago. I could eat a bushel of fibre (a slight exaggeration) and it still wouldn't get things moving. I know it's the Arimidex because during a one month AI holiday things were perfectly normal.
What's been working for me is fish oil, magnesium (1000mg daily) , a cup of morning coffee and lots of water. And, of course, I still eat a lot of fibre. I have a bran muffin recipe that packs in a LOT.
If I get tired of taking so many pills every day and slack off on the fish oil and magnesium everything comes to a standstill within a couple of days.
I am so looking forward to my 5 year sentence being over.
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Kmpod Welcome here
Would you be so kind as to write your recipe?Lily did your doc refer you to a gastroenterologist?
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No referral, no. The fibre is only ispaghula husk, nothing else. I am no longer taking the Arimidex, the level of toxicity on it is cáncer promoting! I take magnesium daily and Vitamin C........
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Lily, some have not trouble with the AI's but not us. I had to stop b/c the pain was unbearable. Since then, back to old regular pain. We do what we have to do.
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I am going to start taking some activated charcoal to see if that helps, and I need to decide if I am going to try taking Exemestane again.........my AI journey so far is
Letrozole - 10 months
Exemestane - 15 months
Anastrozole - 6 weeks..........
Its been suggested I take Tamoxifen but the cáncer I had was lobular and Tamoxifen does not do so well against that and a 25% of women with ILC are resistant to Tamox.......my intuition screamed at me not to take it even as I was going to the cupboard to get them out so now I am in a big dilema.
I could not breathe properly on AI´s after a few months to the point I was tested for heart disease, all symptoms went when I stopped taking them..........and this meant I could not exercise which lower risk and helps my mood..........so do I try exemestane again for a few months in hope side effects don´t come on immediately? Anastrozole is out of the equation as is Letrozole, due to such severe side effects so its Exemestane or TAmoxifen.......or nothing conventional, I could take Curcumin and Indole 3 Carbinol..............
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Afternoon everyone! Boy, I must have been one of the lucky ones. I've survived Letrozole for 5 years and only been having sore knees the last few weeks. Is it physosomatic? Probably, because a week from today I hear whether I'm off for good or go another 5 years. I found when I was on the generic meds, I initially had knee pain but immediately started exercising and it's gone. Only when I don't do any exercise for a few days then it's back but I switched to the brand name when I was involved in a study. Since then nothing until a few weeks ago. I'm hoping this is the last of it but SCARED AS HELL! Sas, I started taking my probiotic again and movement is good. Off of the bars and I've had no problem. I think when I read about bms then I can't go. Again, physosomatic I think!
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Judy not true. I think your microbiome likes to be fed. Interesting about the difference between the trade and generic AI's. Why were you in a study if you don't mind answering
Lily My total time on the AI's was similar to yours. Lasted the longest on Arimidex 7months, shortest was femara about 4 weeks,. Aromasin probably about 15months,
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Sure I'll share, Sas. I really enjoy this recipe because it can be baked up in batches of 6 so the muffins are always fresh.
REFRIGERATOR BRAN MUFFINS
Makes 24 muffins. Batter will keep in refrigerator, tightly covered, for 3 weeks.
Preheat oven to 425 degrees. Butter muffin pan.
2 cups natural wheat bran
1&1/2 tsp baking soda
1/2 cup boiling water (or apple juice)
1 cup applesauce
2 eggs, lightly beaten
1&1/2 to 2 cups of buttermilk (depending on bran & applesauce)
1/4 cup butter, melted or oil
1/2 cup lightly packed brown sugar
2 Tbsp molasses
2&1/2 cups all purpose flour
1 Tbsp baking powder
Spices as desired - I used cinnamon, freshly grated nutmeg and the grated peel of 1 orange.
1 cup golden raisins
Mix together bran, soda and boiling water. Let stand 10 minutes.Stir together buttermilk, applesauce, eggs, melted butter, brown sugar and molasses. Stir into the bran mixture and let stand for 5 more minutes.
In a large bowl blend flour, baking powder and spices. Stir bran mixture into flour until just blended. Stir in raisins. Batter will be lumpy but spoonable.
Spoon batter into muffin cups, in the quantity of muffins desired.
**upon putting muffins into oven, turn down temperature to 400 degrees**
Bake 15-20 minutes. Cool slightly in pan for 10 minutes before removing. Enjoy!
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WoW, yummy, Sounds like you make a few at a time. That reduces wastage, cool. Also, if you grew weary of them for a few days, you don't lose the batter. Thanks M
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Sas, now you ask an old girl why they were in a study. It was a small group of people to see how they tolerated Femara (Letrozole). I can't remember all the details but it was a month long study. I can't remember all the details but something to do with BMI of 25 minus or greater. I took the Brand drug and I absolutely loved it so I then requested it at all times. I will have to try and find the study. I do remember I decided to participate because others before me allowed me to make an informed decision about the drug. I'll check back with you!
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I may have been under a rock, but here is the first I'm hearing of the differences between the trades and generics. Efficacy is to be measured at no less than 83%, if I remember correctly. Never went to the AI threads though. Thanks Judi. Did you have any problems with insurance covering trade drug?
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Hi Sas! No problem with insurance covering the cost of the Letrzole (Brand name). In fact, the doctor must put on the prescription that only the brand name is to be used. Hence, no problem. My husband is a retired firefighter and has a great plan until age 65. The drug costs $490 but I only pay $1.49. Gotta love it. When I was working, my plan only covered 80% so I paid $49.50 then submitted through his plan. Even though it is expensive I've had no problems with the drug. But I was reading on my hospital's website that cancer meds are going through the roof. How do they think people with afford it. I know when I first met with my oncologist, the first question she asked is "do you have a drug plan". If not, then drugs are covered under our Trillium plan but I truly don't know what is covered nor how much. As well Sas, I can't remember what the study involved which I participated but when I'm at the hospital next week I will ask the oncologist.
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Obamacare
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I went to pick up the Sure prep for a scope. 84$. I said to please call the doc and say I need something cheap. Mag citrate is a couple bucks a bottle, Golytlely is around 35$ Nulytely around 50$.. Since I can't do anything till the shoulder heels. Gonna play with them. CHEAP.
So, irritating. A drug rep goes and gives them a song story, dinners, office staff meals, and perks for prescribing a product in lieu of an actual monetary kickback. The doc says this is a better drug. Poor patients actually believe it. Not knowing the alternatives.
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Thanks for sharing the cost of drugs and the sales rep. It actually is shameful that this is allowed to happen. I agree that poor patients believe it. Shame on the drug companies, sales reps and doctors! Maybe this should be heard by many more!
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Sas
In regard to this constipation issue. What do you think about Chia seeds? I know we should all have more fiber and I really think that is my problem (until my problem now with the chemo and anti nausea meds) because I never really could say I had a decent stool (Oh boy, what a conversation LOL )
Reading up on everything as I do, one article states Wheat Bran is the best fiber to be effective. So then of course I would imagine if you try to add more fiber to your diet you need to add more water! The chia seeds really thicken up when added to liquid. Would we need to also add more water in order to avoid constipation perhaps. Just thinking. Would like to add them to cereal but certainly don't want to do anything to make constipation worse. Thanks for your input.
Rosieo
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Hi Rosieo, sometime ago another member brought up chia seeds. Knew nothing of them. Took a look now on the net. Couldn't find anything EBR. I then went to Wiki. It has been a food source for hundreds of years. Could be a food crop for thousands of years and we just don't know it. We only know Flaxseed is 5000 years old b/c it was found in some tombs. Older cultures that were agrarian I find impressive. Without the benefit of Science, they developed food sources. The fact that chia is very old is good
I'm always impressed by things that stand the test of time.In Wiki, I didn't go to the bibliography and read the bibs. It's composition is known. If it were harmful in the food chain it wouldn't have lasted 100's (1000's) of years. It's loaded with B vitamins and other nutrients. " A 100-gram serving of chia seeds is a rich source of the B vitamins, thiamine, and niacin (54% and 59%, respectively of the daily value (DV), and a good source of the B vitamins riboflavin and folate (14% and 12%, respectively). The same amount of chia seeds is also a rich source of the dietary minerals calcium, iron, magnesium, manganese, phosphorus, and zinc (more than 20% DV) (table)."(Wiki). Omega 3 source.
"The seeds are hydrophilic, absorbing up to 12 times their weight in liquid when soaked. While soaking, the seeds develop a mucilaginous coating that gives chia-based beverages a distinctive gel texture. Mucilaginous " Mucilage is edible. It is used in medicine as it relieves irritation of mucous membranes by forming a protective film". ( both from Wiki) Sounds soothing to the intestinal lining.
Nothing in Wiki negative. Nice nutrient source. Nice very much............LOL, I just became a fan.
What makes me wonder is has anyone tried to develop this along the lines of Citrucel or Metamucil. Never looked at the composition of either product. It's kind of a Duh moment. Others say--insightful moment. Took those things for granted.
If the others are chemical & additive based, this would be a great natural alternative with the added bonus of nutrients.
Thanks Rosie for the opportunity to look at this.
(see next post)
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Still thinking about Chia, but from a gardening point of view.
Diseases and crop management[edit]
Currently, no major pests or diseases affect chia production.[26]Essential oils in chia leaves have repellant properties against insects, making it suitable for organic cultivation.[23] Virus infections, however, possibly transmitted by white flies may occur.[30] Weeds may present a problem in early development of the chia crop until its canopy closes, but because chia is sensitive to most commonly used herbicides, mechanical weed control is preferred.[23] (Wiki)
Chia has a natural propellant property against insects. Took a look on net for products. Didn't find any. Certainly better than DEET. It would seem a little experimenting would work. Create a gel thinned after gelling and put in a bottle. Spray on yourself and see if it keeps the mosquitos away. Odd, seems since this originated in South & Central America they would be doing it. Another use could be on garden plants. If anyone tries this let us know what happens?
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Okay, back to the fiber products. If enough water isn't taken with these products you can cause more blockage than you are trying to relieve.
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I used to eat chia seeds, added them to oatmeal. They were nice and soft. But after walking around for a month with a belly ache I cut out the chia seeds and the belly ache went away. Same thing happened with my massage therapist. Just anecdotal, of course.
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Well Corky, I have some questions, but DBF is pacing to go to dinner Will be back later................. Glad you came here. Welcome
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I make a lovely pudding with chia seeds and coconut milk, they are the only ingredients, plus whatever you want to add to flavour, for instance cinnamon, blue berries, I turned it into a rhubarb fool once. Never caused me any problems.............they are highly recommended by nutritionists. I am not taking the fibre drink or any meds now and all is working fine so for me I think it definitely was the Anastrozole......am going to wait a couple more weeks to check all still normal and then will make decision whether to try Exemestane again or stick with things like I3C...
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After buying a pharmaceutical of constipation meds for chemo, the best thing went back to good ole prunes. I ate a handful of this and not long after...................... yup.
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I have eaten so many prunes i look like one, they did not work alone for me!
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Corky, we are the same and different. What works for one, doesn't work for another. That's why the encouragement here for all to put their experiences. People sift through the responses, try things, work it on out for what helps them.
In regard to fiber. the fiber recommendations made by the Gastroenterologist docs national group has changed many times. The last recommendation I was so very surprised at, they recommended the use of Miralax and dropped the fiber recommendation. When my GI doc of twenty years, told me this I just laughed and asked what he thought of it. His look told me. He and I were both very much into research.
If you've read from the beginning, I have stated many times about Miralax (Polyethylene Glycol-PEG) that it is a chemical. It's warning states not to be used by some one with kidney disease. That's huge. Really. The only way that PEG can effect the kidney is, if it crossed from the intestine into the circulatory system. The circulatory system then would carry the PEG molecules through the natural flow of blood and dissolved particles through to the filtration process of the kidney. The implication is that it effects that filtration process. That tells me it can clog something up. I don't have to research it further b/c I understand the circulatory system. But I did research it.
If PEG can effect the kidney, that tells me it can affect other small vessels and endpoints within the body. Yes, they're is some pretty strange info on the internet about PEG. When I searched it several years ago, couldn't quite find the smoking gun in anything I read. BUT the warning label causes me enough concern that I have to relate that concern.
Remember all the years margarine was considered to be safer than butter. Pushed by all primary docs and doc specialties from the 70's. It was because the American Heart Association promulgated that margarine was safer than butter. Then OMD they recognized trans fatty acids as a component of margarine. What most people don't realize from the time trans fat was deemed to be a problem, they're was a delay of almost a decade.
It's tough to know what to do. I'll give you a guide, but it's the old guide. But it will be in the next post.
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Older fiber recommendation. 25-30 gms of fiber a day. the average USA person gets about 12-13 gms a day. If you choose to increase your fiber, first evaluate how much fiber is in your diet. They're charts on the net. I likely will find some, but not tonight.
We tend to fall into the more is better theory. Too much introduced too fast can cause serious problems That's why first evaluate what you have been doing. You may have enough fiber, but not drinking enough fluids.
Fiber without fluids can cause you to plug up.
Once you have determined your baseline fiber intake and choose to move to a higher level, please, consider your intestinal tract hasn't been used to it. The intestinal tract has a muscular layer. It was used to a certain amount of work. Too much fiber introduced too fast can cause your colons muscular problems.
Think of it this way. You never exercise and decide to start walking. Instead of walking a short distance each day and allowing your muscles to respond to the task gradually, you walk two miles. What is your body going to feel like the next day. The whole body is going to object and not be happy. You likely won't be ably to do anything, but go to bed. Everything shuts down.
It's the same with the colon. Give it 4-6 weeks to respond by adding several gms per week. Allow the colon muscle layer to get in shape.
Fluids are important in this process. Too much fiber without enough fluids will only create a constipation problem. Cement would be a good analogy. The average person without medical problems should drink about 2 to 2 1/2 liters a day. That's 2000cc to 2500cc a day. BUT again we are all different.
AS long as the system is working you are doing something right, but tweaking it must be based on what you know about your system. If a problem occurs, then evaluating what caused the change is important. The most recent post exchanges with our sweet Lily shows how a singular drug caused a major change.
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