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Update on sickness

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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 

@chelly Good luck with everything. I'm happy that you have a strategy in place and that you have someone to turn to for suggestions and advice to get you on the right track with your diet.👍

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

Thank you but more importantly is I have you all as well. There is no better advice than from ostomates themselves that have hands on experience going thru things with an ostomy. 


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

Update: they did a re-check on vit C and I went from 7 to 86 now. What a huge jump!!!  Doctor sent a note saying it may take months for me to recover from low vitamin C. Lesson learned!

1714270105-Screenshot_20240427_094919_Chrome2.jpg

   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@chelly wow - that’s an incredible gain! Good news. Even if it takes awhile to recover, you’re definitely heading in the right direction. You’ll get there. You’ve suffered for too long; now you have some answers and you’re already making progress. 👍

 

Laurie

Just a semicolon


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

@tigerlily yes it is a piece of the puzzle and a big one at that. Lol I'm looking at this chart and how close I could have came to zero.  That doctor was a smart one! She caught that.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

Another update: I have been feeling great now! I'm still having bad days though. I really thought I was dying. It was that bad.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

And yet another update.

Saw the dermatologist today. I got to meet with the head of the department today who really no longer sees patients but my appt was with one of the resident's.  I met with him and her last year as well when they diagnosed my exzema. 

He was really surprised about the vitamin C thing and so he has now checked me for zinc and alll B vitamins. Will take a few days for results. What he wants to do he said is start small  now since it has  calmed down by using moisturizers and a different hand soap. I have my steroid cream back too. This one is better because it's not so oily.

They gave me a packed bag of samples and creams and some trial dove sensitive soap. I have a hard time explaining why I can't use creams. You know....I rinse when i empty so should i have a cream on it gets into the end of the bag and then the next time I empty it gets gushed through and sloched into my bag from the residue and my bags fail. Even with washed hands and even with gloves. Goes right thru somehow. So he gave all the samples to find a cream that's thin so that it can wash off easily. Then I can glove. Im .thinkung vanicream is good and thin. I used it today from the samples. It seems to wash off fairly easy. 

If this should happen again them he may have to go for the big guns later. Strong meds. I think he wants to make sure it's not my nutrients first. Smart thinking. I like that. 

Also my primary care ordered some ensure drinks for me to help. Have not gotten yet because insurance needs to sporove but they will. I feel like I'm gaining some weight back now so thats good cuz I don't like me skinny like that.  

I also have another condition that needs treated also and it has a lot to do with skin issues. The rheumatologist felt from my auto immune bloodwork that i MAY have secondary sjougrans from.that. so at the end of the month I have that appt to treat that issue. The derm.agreed about my other condition and my skin as well. So another reason he's probably waiting to see how i do after treatment. 

Anyhow im.getting things done for my health now that im.not working and it's about time it's all about me. I've put my own needs on the back burner to appease others by working when no one else shows up etc... yes time for my health now. 


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

And yet another update.

Saw the dermatologist today. I got to meet with the head of the department today who really no longer sees patients but my appt was with one of the resident's.  I met with him and her last year as well when they diagnosed my exzema. 

He was really surprised about the vitamin C thing and so he has now checked me for zinc and alll B vitamins. Will take a few days for results. What he wants to do he said is start small  now since it has  calmed down by using moisturizers and a different hand soap. I have my steroid cream back too. This one is better because it's not so oily.

They gave me a packed bag of samples and creams and some trial dove sensitive soap. I have a hard time explaining why I can't use creams. You know....I rinse when i empty so should i have a cream on it gets into the end of the bag and then the next time I empty it gets gushed through and sloched into my bag from the residue and my bags fail. Even with washed hands and even with gloves. Goes right thru somehow. So he gave all the samples to find a cream that's thin so that it can wash off easily. Then I can glove. Im .thinkung vanicream is good and thin. I used it today from the samples. It seems to wash off fairly easy. 

If this should happen again them he may have to go for the big guns later. Strong meds. I think he wants to make sure it's not my nutrients first. Smart thinking. I like that. 

Also my primary care ordered some ensure drinks for me to help. Have not gotten yet because insurance needs to sporove but they will. I feel like I'm gaining some weight back now so thats good cuz I don't like me skinny like that.  

I also have another condition that needs treated also and it has a lot to do with skin issues. The rheumatologist felt from my auto immune bloodwork that i MAY have secondary sjougrans from.that. so at the end of the month I have that appt to treat that issue. The derm.agreed about my other condition and my skin as well. So another reason he's probably waiting to see how i do after treatment. 

Anyhow im.getting things done for my health now that im.not working and it's about time it's all about me. I've put my own needs on the back burner to appease others by working when no one else shows up etc... yes time for my health now. 


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

Vitamin c too high now lol!! Dr messaged to say cut back on tablets to one a day now. I went from 7 to 150 now. Still having bad days between the good. Today I feel horribly tired


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

Hi Chelly... I hear your frustration loud & clear!!  Having your health keep you on that proverbial Yoyo, adds to the exhaustion & upset your already feeling.

Look after yourself extra during these times.  Listen to your body.  Hydrate extra if you can.  Eat smaller, more frequent meals.  Get the extra annoying  rest your body is telling you it needs.  Its okay to do that to!! 

Remember, Your body is working overtime to figure out how to fix what's going on.  Try hard to be patient with yourself.   Emotional pressures we inadvertently put on ourselves do not  help a lot. 

You've taken so many important steps to figure things out & your doing as well as you can!  But, I can pretty much gaurentee you nothing is going to change overnight.  Its going to take time for your system to figure things out, but you'll get there.

How are you're classes coming ? I imagine your learning a lot of good information, I'd love to join you! Has your family been eating the same way you had & if so how are they feeling? Do/did they need testing? Some of these deficiencies are hit & miss in can be an exhausting process so try & hang in there & literally go with the flow! If you need food ideas or help finding them based on what you like or can eat, don't hesitate to ask & I'll do my best to help from here.

Linda


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

@dlkfiretruck hi, thank you for the kind reply. The classes are just nutritionist. She says I only needed the one appt. I also have a place going to free deliver frozen  meals and ensure  for seinors.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4255
 

What a bounce back! I'm glad that you're also being tested for zinc and the B vitamins, as any other deficiencies will cause you to feel awful. And you were deficient in one vitamin, you may be low on something else.

Good luck! I hope things continue to improve.

 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

@veganostomy thank you Eric. Since I've cut back on my tablets I'm feeling a little sick again. 3 times in the past 2 days I've had spontaneous bleeding again. It's so frustrating. I took an extra one tonight and will do tomorrow to see if I feel better. I need to.message the doc about it. My skin has become super sensitive since all this started.


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1496
 

@chelly  ... Hang in there Chelly,  it will  take time to correct what your body is doing bcuz of lack of vitamins. Just keep in touch with your GP or whoever you are seeing about all these things.  In Canada we have a 6 month window for seeing & dealing with a Specialist.

YOU are your bodies only advocate & no one knows it better then YOU.  So, if you haven't gone to see the specialist for 5 months make an appt., or you'll be back to a waiting period & referal from your GP to be seen by the specialist all over again.    Also, keep in touch with your specialist for 6 months after your issues are resolved, as things can change. Then you do not have to wait to be seen by them other then the time it takes to book your appt. & get in the door.  I've learned over the years the importance of keeping that specialist door open until my issues have been resolved to the best it can be.  After that its up to you first, then if theres a problem or its time for vitamin check up & your blood work its due go see your GP to keep yourself healthy. 

Just remember that You are one strong Lady, your body has proven that time & again and only you can feel whats happening with your lack of vitamins & how your body is reacting to this issue.  Trust yourself & follow your natural intuition,  if your bodies not happy,  your not going to feel good, sleep good or be happy either.   While seeing your specialist, keep your GP in the loop.  For me, even a Brand Name change in medications has affected me adversly so its really important to keep going back if you need too.   Try & remember that an unhappy body will affect you emotionally as well. All those little signs we ignore can be important! STAY TOUGH!! 

Linda


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

Hi,

I've seen about 3 specialist so far and I have another at the end of the month. So far determined I have severely low vitamin c which is back up now. I have another issue that needs treated as we that can affect skin so that's the one at the end of the month. 

I have a friend in Australia who has similar government insurance like Canada and after learning  how long ypu suffer waiting I have changed my mind about the united states ever getting that kind. Sometimes our specialist get booked like that but mostly the longest you'd wait would be 1, 2 or 3 months. A lot of the time I get in same week or in 2 weeks. 

 

 


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 369
 

@chelly I hope your specialist will be able to get to the bottom of all of this. You have had such a hard time for too long. We’re all hoping for the best for you.🤞🤞🤞

 

Laurie

Just a semicolon


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
Topic starter  

Thank you for your support. All of you .


   
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