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06-14-2017, 03:28 PM   #1
concerned.dad
 
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Could Just Scream!

Posted on here a couple times and read your threads daily.
This site really is helpful, and a good place to 'vent'... So here I am, venting.

I myself, thankfully I don't have Crohn's, but trust CD has had a terrible impact on my life.

All I can do right now, to learn more, to understand its effects and it's burdon's on life is try and understand CD itself, hence why I'm often here.

Every week I read from one source or another, from one country or another... 'Cure Found for Crohn's Disease'

When in harsh reality doctors don't know what day it is when it comes to CD.

That's my vent! Yes this bitch of a disease affects me every day, but as I said, I myself am directly not a sufferer.

You guys who are must be so frustrated, so in need of answers.

Anyway, i'm off to scream into a pillow. Keep fighting and best wishes to you all
06-14-2017, 03:31 PM   #2
ronroush7
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Support to you.

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06-14-2017, 03:48 PM   #3
concerned.dad
 
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Thank you ron, I appreciate that.
Like I said, I come here a lot, it really helps me, ive seen you here a lot too and I know you have your own battles.
For you to be as active here as you are, to be as supportive as you are for others is very commendable.

It seems all we have are places like this and people like yourself to try and get our heads around this disease.

But if we help each other, educate each other, we can find a way to cope.
06-14-2017, 04:23 PM   #4
Tuff
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I'm sorry you're going through this. It must be incredibly hard at times when it's your child that is ill.
It is very frustrating. Just today I googled Crohn's research, and there's just too many hypothesis out there. ScienceDaily says that common yeast can make Crohn's symptoms worse. But I have no idea how reputable that site is. If I followed every Crohn's diet out there, I'd be eating cardboard. I just try to take care of myself, eat healthy, get enough sleep, keep stress to a minimum and keep going.
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06-14-2017, 05:07 PM   #5
concerned.dad
 
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It's not my Son who has it, his Mother, and quite aggressively.
I try to understand this disease because I've seen what it's done to her and everyday it concerns me he too may inherit it. Sure ive read 1 in 5 chance, 33% chance, 10% chance... Whatever the chance, there is one so I try my best to educate myself, so I don't miss what I missed for his Mum.

Listen, I get why we get cancer and other 'well known' diseases on our TV screens, in our papers, talked about on our streets, I totally understand and appreciate that.

But all we hear about Crohn's is BS and false promises and id bet 85% of the world have no idea what Crohn's is.

You're right about the food, lifestyle, the frustration of all these different people's different theories and opinions but all you can do is take the numerous medications to fight the many ugly faces of CD.

And doctors number one go to words of wisdom are... 'don't get stressed'
06-15-2017, 07:24 AM   #6
Tuff
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Stress causes the stomach to produce more acid. I get heartburn when I stress out. It's not the disease that causes it for me, I resigned myself long ago to try to take it one day at a time, and deal with things as they crop up. My stressor is money, or the lack thereof.
06-15-2017, 12:35 PM   #7
concerned.dad
 
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The financial fallout is just yet another chapter in the coin toss game of Crohn's management, and there's few things as stressful as money. Not sure where you're from but here in the UK they can't figure if someone with CD can or should work, if it's classed as an actual disability or not and if you can't work why not and should you recieve benefits. Now to me, that, regardless of the actual day to day problems Crohn's brings, is just another stress... You have my best wishes
06-15-2017, 04:15 PM   #8
Cat-a-Tonic
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I definitely can relate to your financial issues and stress. It's just me and my husband (no kids), I'm the one who is ill. I've been working full-time throughout the entirety of my illness, because I have to. I'm in the US, so I need to work full-time in order to have good health insurance, so that I can see my doctor, so that I can be well enough to work, so that I can have health insurance... it's a pretty vicious cycle. My #1 fantasy is to run away to another country where they have universal health care!

And now my job is in danger (in a nutshell, they might close our office and lay us all off). My husband is the healthy one but he can't seem to find a full-time job that offers health benefits, so for now he's working 2 part-time jobs just so that we can pay our bills. It sucks and it's difficult. But we do what we have to do to survive.

Anyway, I forgot where I was going with this (stupid brain fog!). But I definitely feel for you because I'm also dealing with not only the illness but all of the other stresses of life too. It's really hard. As for finding a cure, I am pretty sure they have to find the cause first - that's how those things seem to work. Until they figure out the cause, I'm not sure that a cure is on the near horizon. I hope I'm wrong, though, I hope a cure is much closer and will be affordable and accessible to all.
06-15-2017, 04:35 PM   #9
ronroush7
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Stress causes the stomach to produce more acid. I get heartburn when I stress out. It's not the disease that causes it for me, I resigned myself long ago to try to take it one day at a time, and deal with things as they crop up. My stressor is money, or the lack thereof.
I am on a limited income and finance is also a stress in my life.
06-16-2017, 08:04 AM   #10
concerned.dad
 
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We have an amazing health care system here in the UK, the often bad mouthed NHS who from my own personal experiences I can honestly not praise high enough. They have however dropped the ball more than once r.e Crohn's but I see this more a universal problem rather than a fault of the NHS as I read people here the world over who have had the same issues., and in there is my point... We also have here some of the world leaders on CD who work privately and at a high price, but you can't put a price on getting actual answers, getting actual results
06-16-2017, 10:24 AM   #11
Bufford
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Its a double edged sword we have here, while we do have universal healthcare, the cost of living here is very high. There is no such thing as free healthcare, either one pays through an insurance program or the costs will be part of the taxes. Either way its very stressful financially. My life was about survival, working full time just to keep a roof over my head, and food in my pantry.
There was many times I simply wanted to give up, and remembered hoping for a terminal cancer diagnosis after the big operation. That didn't happen, rather the opposite being early retirement. With that the sun came out and shone down on me, life is much better now, but my pension is small and I have to account for every penny.
06-16-2017, 10:45 AM   #12
concerned.dad
 
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It is very much a double edges sword Bufford, we are lucky if not dealing with a life long, day by day illness such as CD, but when you are what you say is so true. Your life isn't a "life" it at times simply does come down to survival. As you say you're on a pension then clearly this has been an issue for you for quite some time and to feel and think as low as you have, in this day and age with what we have, is nothing short of a scandall
06-16-2017, 01:05 PM   #13
wildbill_52280
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concerned.dad,

Here are some tips your wife may not have tried yet. These are non pharmaceutical options that exist in science that your doctor may not know about or tell you about.

Vit d supplements have been shown to help lower some symptoms of CD.

niacin can help suppress symptoms, take only 1 pill a day never more then this. Explaining why this helps CD is a long conversation but it helps and is cheap and natural. https://www.iherb.com/pr/Nature-s-Wa...-Capsules/1999

prebiotic fiber(psyllium) and probiotics have been shown in a small study to induce remission and maintain it. https://www.ncbi.nlm.nih.gov/pubmed/17688660

consider this probiotic, http://www.renewlife.com/ultimate-fl...0-billion.html
It has 40 different strains and 2 very important strains b. infantis and L. reuteri.


Avoid emulsifiers and Artificial sweeteners they have been linked to causing IBD and other diseases they can feed bad bacteria in the good which outcompetes the good bacteria. Polysorbate, Xanthan gum, Caregeenen, modified corn starch, or any modified starch, hydrypropylmethylcellulose, or anything methylcellulose. Natural unmodified starch is likely fine a is some fibers. Some artificial sweeteners include sucralose, aspartame, saccharin, acsulfame k, I find stevia also irritates me but may be the healthiest.

eliminating refined sugar and lactose can help, and avoiding certain complex carbs can help, typically potatoes and whole wheat i believe may be the safest making your own bread is preferable. This is kind of the theory behind the SCD diet which has been scientifically tested but has been found in a book for some 30 years called breaking the vicious cycle. https://www.ncbi.nlm.nih.gov/pubmed/24048168
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4560333/

Use canola oil which is an omega 3 oil, and avoid corn oil and other oils which can increase inflammation.

Look into the FODMAP diet some types of fiber can irritate symptoms also. use this info to do an elimination diet and test different foods one at a time one food per week. I find cooked broccoli and spinach are the most tolerable vegetables and it's a good place to start, and onions and garlic can cause issues if eaten more the one day a week. Choose one day a week to eat foods that you cant tolerate just a to get a varied diet.

If you would like more tips, let me know!
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Last edited by wildbill_52280; 06-16-2017 at 01:27 PM.
06-17-2017, 05:15 AM   #14
concerned.dad
 
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Thank you wildbill, that's some usefull info. As im sure you know, she's a woman, she knows everything haha but i'll be sure to pass this on, if she puts any of it to use who knows (oddly she has full faith in her 'specialists' and tends to only listen to them) but from what ive seen nothing has changed, only got worse. So thanks again for that, because from my POV I and WE need whatever help we can get and you clearly know what works for you
06-17-2017, 10:30 AM   #15
Bufford
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I looked up Niacin on the google and came across this article which is interesting
https://www.usmedicine.com/oncology/...s-inflammation
I am going to pick up some Niacin and experiment.
06-17-2017, 12:58 PM   #16
concerned.dad
 
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Thanks Guys! I'll give these links a read over the weekend. Knowledge is Power right!? Haha. I apreciate the help
06-21-2017, 09:20 PM   #17
wildbill_52280
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I looked up Niacin on the google and came across this article which is interesting
https://www.usmedicine.com/oncology/...s-inflammation
I am going to pick up some Niacin and experiment.
I tried megadosing, it made me feel like garbage. The limit is one pill, that's it that's all that helps any more is toxic one pill of the natures way brand will be about 500% daily value. It activates butyrate receptor.
06-22-2017, 10:33 AM   #18
Bufford
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I've been trying it this week too. I found after just taking one a day that it made me feel faint at times. I read up that niacin is good for controling cholesterol, but it may mess with blood pressure pills which I suspect maybe causing my faintness issue. Niacin also thins the blood which may cause bleeding.
I'd be careful with it, I am going to only take it twice a week instead of daily and see how it interacts with my system.
06-23-2017, 02:42 PM   #19
concerned.dad
 
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How do you guys cope with this shit? As I said, Im not a CD sufferer, I just suffer 2nd hand because I love so much someone who is. Obviously I see, I know what she has to go through each day, but how do you guys handle it? And yet you still log on to this site to try and help others... You're all remarkable
06-23-2017, 02:44 PM   #20
ronroush7
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It is hard.

06-23-2017, 02:57 PM   #21
concerned.dad
 
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It is but you do it, regardless your own issues you come here just to offer whatever you can to help others... Now before I sound patronising, id not have coped as well as I have without this place. Fact! And I am so greatfull to you all
06-24-2017, 12:40 PM   #22
Bufford
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Crohn's is the thief of life,
My life has been about loses, and as I go through my senior years I reflect back and see nothing but loses, dreams turned into wreckage. Even the light that helped light the way through decades of darkness was lifted out of reach and extinguished. I had hoped that I had enough between my home and my finances to buy a cottage next to my nephew's but that was simply not possible. I will have to live my remaining years here a thousand miles away, the cost of living would not allow me to move to that part in eastern Ontario, its too costly for me to live there.

I just plod along, cope with the flares, and take whatever small pleasures that still do come my way. Its these that I thread life through the eye of the needle and make the best of what life is. Its not much but better than the alternative. The lights are still on and that is the main thing.
06-24-2017, 01:01 PM   #23
ronroush7
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Crohn's is the thief of life,
My life has been about loses, and as I go through my senior years I reflect back and see nothing but loses, dreams turned into wreckage. Even the light that helped light the way through decades of darkness was lifted out of reach and extinguished. I had hoped that I had enough between my home and my finances to buy a cottage next to my nephew's but that was simply not possible. I will have to live my remaining years here a thousand miles away, the cost of living would not allow me to move to that part in eastern Ontario, its too costly for me to live there.

I just plod along, cope with the flares, and take whatever small pleasures that still do come my way. Its these that I thread life through the eye of the needle and make the best of what life is. Its not much but better than the alternative. The lights are still on and that is the main thing.
Sending support
06-24-2017, 02:18 PM   #24
Crohns08
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As a mother of three (two under three years old and a canine under one) you just do it. You try not to let the disease take any more than necessary and you take it one step at a time. I have been on every single medication out there and failed them all. In my case the SCD is the only thing that keeps me in remission long term. There are studies being done right now with great success in major university hospitals right now. It's a hard diet but it works when done right. I urge you to buy the book and read it. I am restarting my diet now after a round of antibiotics messed me up bad. Already in three days of fasting with liquids and small pieces of chicken I have seen major improvement in my bowels and cramping.

However if you don't want to try the diet I highly recommend either juicing or blending up smoothies of kefir and fruits or vegetables as a more tolerable way to get nutrition, take a high quality probiotic, high quality fish oil and vitamin D. Being malnourished makes this disease so much worse in my own personal experience.
06-25-2017, 11:26 AM   #25
concerned.dad
 
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From my day to day experience of CD it's not the disease its self that is the major issue, the disease can be managed (to an extent) with its variants of treatment and meds, though as we all know, this is nothing but a temporary measure... It is the point of literally having to cope day by day that is the major problem. How do we, how can we ever find a way of having just a little bit of clarity? Crohn's just holds so many unknowns, you spend so long worrying about how to deal with these unknowns it hits you again, and again
06-26-2017, 10:36 PM   #26
MizzSarah
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I've heard too many times the don't be stressed comment and I just cringe. There is no way to not be stressed out with how things are right now in the world. There are no easy handouts--we all have to work and find a way to pay for unexpected costs. Life would be fantastic if there was no legitimate stressors.

My father has battle Crohn's for decades--he was diagnosed in his early twenties and I followed at the exact age he was. His is far more progressive then mine so not only do I have my own issues I'm watching his battle hit Many hurdles. There has been many times lately where I thought this was it for him and I'm not so sure how I'll handle it when he does pass. He reminds me all the time there is still hope to have but I don't see any real progress made in the last few decades. They've taken 40 years of his life and I'll be nearing 3 years in August. Shouldn't that be enough life--waiting in the balance--for any glimmer of hope? I don't expect a cure--but surely there should be something to offer by now.




It's not my Son who has it, his Mother, and quite aggressively.
I try to understand this disease because I've seen what it's done to her and everyday it concerns me he too may inherit it. Sure ive read 1 in 5 chance, 33% chance, 10% chance... Whatever the chance, there is one so I try my best to educate myself, so I don't miss what I missed for his Mum.

Listen, I get why we get cancer and other 'well known' diseases on our TV screens, in our papers, talked about on our streets, I totally understand and appreciate that.

But all we hear about Crohn's is BS and false promises and id bet 85% of the world have no idea what Crohn's is.

You're right about the food, lifestyle, the frustration of all these different people's different theories and opinions but all you can do is take the numerous medications to fight the many ugly faces of CD.

And doctors number one go to words of wisdom are... 'don't get stressed'
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06-27-2017, 07:29 AM   #27
concerned.dad
 
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'Surely there should be something to offer by now' ..... Can't really sum CD up much better really can you!? It has only affected my life over the past 3 years or so, for you to have had this burden your entire life through your Father, to watch what it has done to him and then for you to develop it yourself must be so very hard for you Sarah. You have my very best wishes that you of all people get something reliable to work with, some kind of positive answers
06-27-2017, 10:57 AM   #28
emmaaaargh
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From my day to day experience of CD it's not the disease its self that is the major issue, the disease can be managed (to an extent) with its variants of treatment and meds, though as we all know, this is nothing but a temporary measure... It is the point of literally having to cope day by day that is the major problem. How do we, how can we ever find a way of having just a little bit of clarity? Crohn's just holds so many unknowns, you spend so long worrying about how to deal with these unknowns it hits you again, and again
Unfortunately, the best (and only) way I've found to do this in my 10 years with Crohn's is just to attempt to ignore it as much as possible. That sounds irresponsible at first, so let me explain - I don't mean ignoring symptoms or burying my head in the sand or anything! Just that, for better or worse, it's with me, and likely will be for the rest of my life, and I can't do anything to change that. So rather than rage about what it's taken away from me, I focus on what I can do instead, and how to improve my quality of life as much as possible. And I always try to remember to appreciate the moments of good health and happiness that I have, because there's no guarantee that any of it will continue
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06-27-2017, 11:04 AM   #29
ronroush7
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Unfortunately, the best (and only) way I've found to do this in my 10 years with Crohn's is just to attempt to ignore it as much as possible. That sounds irresponsible at first, so let me explain - I don't mean ignoring symptoms or burying my head in the sand or anything! Just that, for better or worse, it's with me, and likely will be for the rest of my life, and I can't do anything to change that. So rather than rage about what it's taken away from me, I focus on what I can do instead, and how to improve my quality of life as much as possible. And I always try to remember to appreciate the moments of good health and happiness that I have, because there's no guarantee that any of it will continue
A great attitude.

06-27-2017, 01:57 PM   #30
concerned.dad
 
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A really great attitude. All the best to you Emma!
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