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  Topic Review (Newest First)
04-03-2016 08:40 AM
Windigo
Quote:
Originally Posted by veggie man View Post
Great news, Windigo!

You were amazingly cool and mentally sharp when you posted right after your crisis. Best of luck on your recovery.
I just really needed some support and you guys gave it to me

Thank you all for your help !

Recovery seems to be seriously getting there; and a veg* diet is really helping me too. Glad to be here again
04-02-2016 07:49 PM
veggie man Great news, Windigo!

You were amazingly cool and mentally sharp when you posted right after your crisis. Best of luck on your recovery.
04-02-2016 06:59 PM
karenlovessnow Good news...welcome back!


Sent from my iPhone using Tapatalk
04-02-2016 05:57 PM
silva I'm glad to know!
Do what you need to stay healthy, I'm glad you're feeling better!
04-02-2016 07:20 AM
Windigo Sorry for bumping this old thread ;

But I wanted to say thank you to all who supported me

And share the good news that I've finally found meds that help manage my Crohn's and I've been only improving for the past 3 months!

I have to be vegetarian still because of several serious nutrient deficiences; but otherwise I am doing well and slowly veganising things again.

Great to be back!
09-11-2015 07:12 PM
Purp I'm glad you are better, @Windigo .
09-10-2015 12:57 PM
Beautiful Joe I'm so glad they caught that in time!

Crohn's is such a tough illness in so many ways.
09-10-2015 12:06 PM
Joan Kennedy What a horrifying experience. Nothing like a correct diagnosis to get you back on track. Feel better, Windigo!
09-10-2015 11:59 AM
Windigo I'm back home!

I'm feeling way better than I have in months; it's incredible! The doctor said that as soon as the embolus is gone I should feel major improvement and it's true!

I can breathe, I can move, I don't need to sleep during the day! It's freaking amazing. I can live!

I'll take it slow, but if I keep feeling this way I am more than grateful
09-07-2015 04:51 AM
Windigo
Quote:
Originally Posted by Kiwibird08 View Post
Sounds like you have very competent doctors monitoring and treating you. Consider yourself*** LUCKY*** for that! It is so rare anymore to get competent doctors, especially when you're trying to get a serious disease under control. You are also lucky your nutritional issues are at a minimum at this point. Hopefully they can get it into remission before that changes. I think your plant based diet will help. Fermented/cultured foods and HSO/probiotic supplements also helped me a lot, especially cultured foods like yogurt and kefir (I was not vegan at that time, just veg. but I know they make vegan yogurt and probably vegan kefir too, which was about the only thing that I could consume to help keep food down).

Curious is your affecting your lower GI tract? Mine was mainly affecting my stomach and small intestine (which is why I've always questioned the diagnosis, since it is very rare to have upper GI crohns).
I'm very blessed to live in a country with affordable, competent healthcare

I have got Crohn's Colitis (yes that is actually an official diagnosis sadly) which means that I've got Crohns that behaves mostly like Colitis. So most of the time the areas of Colitis are affected but sometimes I also get Crohn's active somewhere else. Right now Crohn's is active in the fat digestion area (sorry English is not my first language) and the rest of my bowels are calm. I'm not flaring, just a little bit of pain after each meal.

Going plant based has certainly helped me, due to prednisone my weight was up to a whopping 113 kilo's and since I went vegan three weeks ago I have lost 5 kilo's and am down to 108 while not excersising because I have been so ill. So when I get better and can excercise going vegan will certainly help me shed those darn pounds

Aside from that; good news all around. I am allowed to move again, I can stay without oxygen in the mornings and will get fysiotherapy. When I can climb stairs on my own again I will be allowed to go home.
09-05-2015 08:22 AM
Kiwibird08
Quote:
Originally Posted by Windigo View Post
I am monitored on the vitamins too; that's how I know about the deficient vit D; but thankfully so far my nutrient deficicies have been minimal. Reading your post, I think I should be happy with that

And yeah, Crohn's affects the whole body and can be quite devastating as I have just proven. But with baby steps I'll get back in shape.
Sounds like you have very competent doctors monitoring and treating you. Consider yourself*** LUCKY*** for that! It is so rare anymore to get competent doctors, especially when you're trying to get a serious disease under control. You are also lucky your nutritional issues are at a minimum at this point. Hopefully they can get it into remission before that changes. I think your plant based diet will help. Fermented/cultured foods and HSO/probiotic supplements also helped me a lot, especially cultured foods like yogurt and kefir (I was not vegan at that time, just veg. but I know they make vegan yogurt and probably vegan kefir too, which was about the only thing that I could consume to help keep food down).

Curious is your affecting your lower GI tract? Mine was mainly affecting my stomach and small intestine (which is why I've always questioned the diagnosis, since it is very rare to have upper GI crohns).
09-05-2015 04:20 AM
Windigo
Quote:
Originally Posted by LedBoots View Post
I hope you are continuing to feel stronger. When you get out of there and can, get some sunshine on your skin to absorb Vitamin D that way.
I look forward to that
09-05-2015 12:54 AM
LedBoots
Quote:
Originally Posted by Windigo View Post
I am monitored on the vitamins too; that's how I know about the deficient vit D; but thankfully so far my nutrient deficicies have been minimal. Reading your post, I think I should be happy with that

And yeah, Crohn's affects the whole body and can be quite devastating as I have just proven. But with baby steps I'll get back in shape.
I hope you are continuing to feel stronger. When you get out of there and can, get some sunshine on your skin to absorb Vitamin D that way.
09-04-2015 10:36 PM
Windigo
Quote:
Originally Posted by Kiwibird08 View Post
When my Crohns was at it's worst, I had to be on several injections (iron and b vitamins).

Interestingly, I was also suffering hypercalcemia (way too much calcium in the blood) and had to be put on massive doses of vitamin D (orally) to regulate the calcium. The hypercalciemia was actually worsening my nausea and vomiting.

It is very important for Crohns patients to be monitored for vitamin/mineral levels. It can do so many terrible things to the body beyond the GI tract. It is a truly horrendous disease.
I am monitored on the vitamins too; that's how I know about the deficient vit D; but thankfully so far my nutrient deficicies have been minimal. Reading your post, I think I should be happy with that

And yeah, Crohn's affects the whole body and can be quite devastating as I have just proven. But with baby steps I'll get back in shape.
09-04-2015 10:30 PM
Windigo
Quote:
Originally Posted by lookforstars View Post
fingers crossed your health and yes my mum is well (enough) she has never been back in hospital anyway
Quote:
Originally Posted by abigail950 View Post
its not to bad. i am still alive and that all that matters.

hope you will better soon.
Good to hear from you both! Glad you made it through
09-04-2015 08:59 PM
Kiwibird08
Quote:
Originally Posted by Windigo View Post
My vitamin D is low and has been low all this time, I'm taking supplements and medication for it but it's hard for my body to absorb. I might ask if injections are an option; it's something I will go after soon. Thank you for the suggestion
When my Crohns was at it's worst, I had to be on several injections (iron and b vitamins).

Interestingly, I was also suffering hypercalcemia (way too much calcium in the blood) and had to be put on massive doses of vitamin D (orally) to regulate the calcium. The hypercalciemia was actually worsening my nausea and vomiting.

It is very important for Crohns patients to be monitored for vitamin/mineral levels. It can do so many terrible things to the body beyond the GI tract. It is a truly horrendous disease.
09-04-2015 08:28 PM
lookforstars
Quote:
Originally Posted by Windigo View Post
:O your mom is still here I hope? Good luck to you!

I'm glad my specialist doctor knew what was going on; because the ER doctor had sent me away on saturday saying that my lungs sounded OK so the breathlessnes sure wasn't a problem. Problem is, with an embolus the lungs sound normal; I'm very lucky that my specialist pressed them to hospitalize me anyway. He saved my life.
fingers crossed your health and yes my mum is well (enough) she has never been back in hospital anyway
09-04-2015 03:47 AM
abigail950 its not to bad. i am still alive and that all that matters.

hope you will better soon.
09-03-2015 10:18 PM
Windigo
Quote:
Originally Posted by LedBoots View Post
Quote:
Originally Posted by Windigo View Post
I'm doing a little better today, I have been moved to regular care and I need a little less oxygen from my tank. I was on 5 and I have gone down to 2 now because my heartrate and oxygen saturation have consistently been lower than yesterday. It's between 120 and 130 bpm now as apposed to 140-150 so slowly things are improving.

I'm still bed bound though, the only thing I am allowed to do is step out of bed for the use of the bedpan chair. And my body reacts to that as if I am running a marathon. So all I do is draw, chat to visitors or on the web, and read little bits. I sleep a lot .

According to the nurses I will survive this if I pretend to be 80 years old, and so I will. For now, I will do almost nothing.
Good! That is a good improvement for your O2 needs! I'm glad your nurses are giving you the facts. Don't be afraid to ask for things while you're there. I know it must be so hard to have your world shrunken to a tray table and bedside commode. Good news is, you have gotten past the scariest part and just have to act 80 years old for a time. [emoji813] [emoji813]
Yes I am also glad to not be kept in the dark about the facts of my illness.

I normally do intense physical work so this is quite a switch but I'm definitely going to take it slow. I want to live
09-03-2015 10:10 PM
Windigo
Quote:
Originally Posted by abigail950 View Post
i feel for you i had pulmonary embolism 3 years ago i am still on o2 .
Oh my goodness; how are you coping with that? Seems scary to me to have to carry a flask around all the time.
09-03-2015 07:31 PM
LedBoots
Quote:
Originally Posted by Windigo View Post
I'm doing a little better today, I have been moved to regular care and I need a little less oxygen from my tank. I was on 5 and I have gone down to 2 now because my heartrate and oxygen saturation have consistently been lower than yesterday. It's between 120 and 130 bpm now as apposed to 140-150 so slowly things are improving.

I'm still bed bound though, the only thing I am allowed to do is step out of bed for the use of the bedpan chair. And my body reacts to that as if I am running a marathon. So all I do is draw, chat to visitors or on the web, and read little bits. I sleep a lot .

According to the nurses I will survive this if I pretend to be 80 years old, and so I will. For now, I will do almost nothing.
Good! That is a good improvement for your O2 needs! I'm glad your nurses are giving you the facts. Don't be afraid to ask for things while you're there. I know it must be so hard to have your world shrunken to a tray table and bedside commode. Good news is, you have gotten past the scariest part and just have to act 80 years old for a time. [emoji813] [emoji813]
09-03-2015 07:21 PM
abigail950
pulmonary embolism

i feel for you i had pulmonary embolism 3 years ago i am still on o2 .
09-03-2015 05:18 PM
SmellyVegan
Quote:
Originally Posted by Windigo View Post
My vitamin D is low and has been low all this time, I'm taking supplements and medication for it but it's hard for my body to absorb. I might ask if injections are an option; it's something I will go after soon. Thank you for the suggestion
Well I can tell you about 12 months ago my blood vitamin D levels was about 23nmols, which is seriously deficient. Since that time I have made an effort to exercise outside in the sun 3-4 times a week (which is good for many things), take 2000IU a day, and eat sundried mushrooms (which I make myself for the winter). My blood vitamin D is now over 120 nmol. I did this because I realized the importance of vitamin D after reading a great book on it ("Vitamin D: Is This The Miracle Vitamin"). I felt so inspired after reading it, I made an entire video serious on it (including one on crohn's disease ). I really think it has helped alot.

I think it's important to understand that standard recommended intake is not enough to boost vitamin D levels significantly. You can see in this chart here
to boost vitamin D levels from 25nmol to 50 nmol takes 1000 IU. The recommended dose is usually under that, around 600-800 IU depending on what organization. This dose, like most standard recommended doses, is the level needed to prevent deficiency diseases i.e. rickets. However, for good health we want around 125 nmol. To achieve that it is going to take around 5,000 IU a day (in whatever form i.e. supplement, sundried mushrooms, sunshine, vitamin D lamp).
09-03-2015 11:55 AM
Windigo I'm doing a little better today, I have been moved to regular care and I need a little less oxygen from my tank. I was on 5 and I have gone down to 2 now because my heartrate and oxygen saturation have consistently been lower than yesterday. It's between 120 and 130 bpm now as apposed to 140-150 so slowly things are improving.

I'm still bed bound though, the only thing I am allowed to do is step out of bed for the use of the bedpan chair. And my body reacts to that as if I am running a marathon. So all I do is draw, chat to visitors or on the web, and read little bits. I sleep a lot .

According to the nurses I will survive this if I pretend to be 80 years old, and so I will. For now, I will do almost nothing.
09-03-2015 11:49 AM
Windigo
Quote:
Originally Posted by SmellyVegan View Post
That's too bad. I hope things get better for you.

Are you aware of your vitamin D levels? Maintaining good vitamin D levels is beneficial for people with crohns disease.
My vitamin D is low and has been low all this time, I'm taking supplements and medication for it but it's hard for my body to absorb. I might ask if injections are an option; it's something I will go after soon. Thank you for the suggestion
09-02-2015 08:44 PM
HumbleBee Good to hear that you are okay!! *Sending a prayer your way*.
09-02-2015 04:38 PM
SmellyVegan That's too bad. I hope things get better for you.

Are you aware of your vitamin D levels? Maintaining good vitamin D levels is beneficial for people with crohns disease.
09-02-2015 03:11 AM
karenlovessnow Oh my gosh...so sorry to hear all this but glad you are ok!


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09-02-2015 02:45 AM
Windigo
Quote:
Originally Posted by mackiesgirl View Post
Have you been tested for pernicious anemia? I'm sorry for asking but you know I have colitis,it caused PA. I had breathlessness and other complications. I'm on a facebook group for people with PA and you would not believe how many people on there have celiac, crohn's or colitis. Most doctors do not know enough about it, because it isn't really taught in med school. If you can give yourself injections then you are half way there. I give myself b12 shots and am so much better. Remicade blocks the obsorption of b12 and other important vitamins.
I will ask my doctor about this; thank you for the info
09-02-2015 02:43 AM
Windigo
Quote:
Originally Posted by lookforstars View Post
Oh my goodness! I am so glad you're ok, my mum has crohn's and she was hospitalised for the same reasons a few years ago (she ended up in hospital for about 9 months!) I wish doctors were able to figure these things out sooner.
:O your mom is still here I hope? Good luck to you!

I'm glad my specialist doctor knew what was going on; because the ER doctor had sent me away on saturday saying that my lungs sounded OK so the breathlessnes sure wasn't a problem. Problem is, with an embolus the lungs sound normal; I'm very lucky that my specialist pressed them to hospitalize me anyway. He saved my life.
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