I was almost a goner this weekend - VeggieBoards
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#1 Old 09-01-2015, 01:20 AM
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I was almost a goner this weekend

Most of you who've read my posts here know I've got Crohn's disease, and this weekend a complication of that nearly killed me.

I've developed multiple blood clots in my lungs (pulmonary embolism) due to my Crohn's being active for over 8 months. At first they thought that my breathlessness was caused by the medication, until last weekend it became unbearable. Turns out I would've been dead if they hadn't intervened this weekend.

Just wanted to say I am happy to still be here!

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#2 Old 09-01-2015, 02:19 AM
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VERY happy you're here, Windigo!

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#3 Old 09-01-2015, 02:31 AM
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Hey Windigo! I don't know you but I'm happy they were able to intervene before it was too late. How are you feeling at the moment? Crohn's is awful. My brother in law has it too xx

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#4 Old 09-01-2015, 02:49 AM
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So glad you're all right! How terrifying.
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#5 Old 09-01-2015, 02:57 AM
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I'm glad you are ok too!
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#6 Old 09-01-2015, 03:03 AM
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Hey Windigo! I don't know you but I'm happy they were able to intervene before it was too late. How are you feeling at the moment? Crohn's is awful. My brother in law has it too xx

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I'm alright as long as I stay in bed it keeps my heartrate around 100, if I get active in any way it shoots up to 140-ish because of the lack of oxygen. But I am well cared for so I feel better than yesterday.

The irony is that while my body is in turmoil now my bowels are finally quiet because of the Remicade treatment. So that's at least one good thing.
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#7 Old 09-01-2015, 04:45 AM
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Wow, I'm so happy you're okay! Please keep us updated on your progress, you'll be in my thoughts.
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#8 Old 09-01-2015, 08:16 AM
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I am glad they were able to treat you! That must've been terrifying.

It is amazing the systemic damage crohns can do. Such a nasty disease. I sincerely hope you are able to get yours into permanent remission soon.
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#9 Old 09-01-2015, 08:51 AM
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Originally Posted by Windigo View Post
Most of you who've read my posts here know I've got Crohn's disease, and this weekend a complication of that nearly killed me.

I've developed multiple blood clots in my lungs (pulmonary embolism) due to my Crohn's being active for over 8 months. At first they thought that my breathlessness was caused by the medication, until last weekend it became unbearable. Turns out I would've been dead if they hadn't intervened this weekend.

Just wanted to say I am happy to still be here!
Omg Windigo, how frightening! I am soooo glad you caught it in time! Breathe easy, my friend.
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#10 Old 09-01-2015, 10:23 AM
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Wow, I'm so happy you're okay! Please keep us updated on your progress, you'll be in my thoughts.
I wasn't entirely focused yesterday so I missed the correct name for my diagnosis, but it's a ''saddle embolus'' which means I could've died suddenly within 15 minutes of any time I got short of breath the past three weeks. Triple hurrah for me still being here to tell the tale!

I've achieved a new step in my treatment, I gave myself an injection today because I had to learn that in order to go home eventually. I'll have to give myself injections for the coming three months. The sister was proud

I'm bed bound currently because my heartrate is ok if I stay in bed, in a few days that should get better. For now at least I feel better than yesterday.
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#11 Old 09-01-2015, 05:40 PM
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I hope you're able to get up and about soon. Glad you're getting better too. Well done on giving yourself an injection. It is a big step. Xx

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#12 Old 09-01-2015, 06:32 PM
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Geez I'm glad you made it! I hope you're better soon!
I had no idea Crohns could do that
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#13 Old 09-01-2015, 06:52 PM
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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.
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#14 Old 09-01-2015, 07:02 PM
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I'm glad you're a stayer and not a goner. Hang in there and get better.
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#15 Old 09-01-2015, 07:08 PM
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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.
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#16 Old 09-02-2015, 02:40 AM
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Geez I'm glad you made it! I hope you're better soon!
I had no idea Crohns could do that
Not even all doctors know Crohn's can do that, but it's what happens to up to 2% of crohn's sufferers who have a prolonged flare. I've been flaring for 8 months and have been hospitalized 4 times now because of it; apparantly the prolonged infection can cause blood clots to form and that's how my embolus got into existence.

I'm glad I'm capable of telling the tale and warning others!

Right now I need help with everything from washing to going to the toilet but I'm told that I should be feeling marked improvement in a day or two. I hope so
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#17 Old 09-02-2015, 02:43 AM
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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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#18 Old 09-02-2015, 02:45 AM
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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
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#19 Old 09-02-2015, 03:11 AM
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Oh my gosh...so sorry to hear all this but glad you are ok!


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#20 Old 09-02-2015, 04:38 PM
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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.
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#21 Old 09-02-2015, 08:44 PM
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Good to hear that you are okay!! *Sending a prayer your way*.
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#22 Old 09-03-2015, 11:49 AM
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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
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#23 Old 09-03-2015, 11:55 AM
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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.
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Last edited by Windigo; 09-03-2015 at 11:57 AM.
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#24 Old 09-03-2015, 05:18 PM
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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).

Last edited by SmellyVegan; 09-03-2015 at 05:34 PM.
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#25 Old 09-03-2015, 07:21 PM
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Unhappy pulmonary embolism

i feel for you i had pulmonary embolism 3 years ago i am still on o2 .

Could you look an animal in the eyes and say to it, "My appetite is more important than your suffering"?
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#26 Old 09-03-2015, 07:31 PM
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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.
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#27 Old 09-03-2015, 10:10 PM
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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.
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#28 Old 09-03-2015, 10:18 PM
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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.
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
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#29 Old 09-04-2015, 03:47 AM
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Smile

its not to bad. i am still alive and that all that matters.

hope you will better soon.

Could you look an animal in the eyes and say to it, "My appetite is more important than your suffering"?

Last edited by abigail950; 09-04-2015 at 03:50 AM.
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#30 Old 09-04-2015, 08:28 PM
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: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
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