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Update on sickness

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

Hello all,

It's been a while. I decided to hold off on SSI disability until I have a for sure qualifying diagnosis. Since I've last been on I went to rheumatology. She did not feel my symptoms matched lupus but looking at my bloodwork she feels i may have secondary sjourgan syndrome from another health issue that i currently have. So i need to go get that taken care of. But in the appointment she saw my skin and listened to me telling her all of the symptoms I have been having.she then asked me if i was eating enough oranges or fruits and veggies. I  told her with the ostomy I can't eat oranges and a lot of veggies due to the skin and such but that i used to buy OJ and V8 juice but have not in  quite a long time. 

She said just listening to you and your symptoms and seeing your skin this reminds me of scurvy.  She ran a vitamin C check amd low and behold I was very, very low. The lowest number on the reference range was 21 and I was at 7. 

I have been taking 500 MG of vitamin C twice a day now and bought loads of OJ to keep here. Pulp free of course. 

Anyhow it's been a little over a week but the wounds that opened up by themselves bleeding have now mostly healed. My energy is slowly coming back but still getting fatigued. 

I came back to post this to remind ostomates how important it is for us to be very diet conscious that we are getting our nutrients. Some of us can get low vitamin B im learning as well.  With all the diet restrictions we have because of seeds, skins etc... we really need to stay on top of our nutrition needs. 

Who would have ever thought Scurvy? In this day and age. It's not the only thing that wrecked havoc on me and i still have other docs to see but this was a huge portion that was contributing to things. 

I honestly think when people have new stomas that they need to send us to a nutritionist to guide us about our nutrition. Im.going to suggest this to my current hospital.  


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

Hi Chelly, that’s amazing to be getting an answer and feeling the benefits of adjusting your diet. When I hear the word scurvy I think of sailors on ships in ole times. I know I am guilty of not getting enough vitamins and minerals. We are what we eat. I hope you continue to reap the benefits 🙏👍

ileostomy 31st August 1994 for Crohns


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 543
 

Wow, that is great news that the vitamin C supplement is helping!

I haven’t gone to all the trouble of removing membranes from fresh orange segments (and so haven’t had a fresh orange since my surgery) but lately I have added those little canned mandarin oranges to my diet, about 6-8 at a time without problems (I do love them) - just my experience.

Hope things continue in this good direction for you.

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


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

@john68 thank you! There is more going on but yes it's certainly helping this vit C.  Yes my sister said the pirate days lol!!


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

@llholiday I don't know where i got this but I just remember not to eat oranges due to the membrane and such. I was told j would do better with canned fruits, veggies and juices. Unless I misunderstood. 

@Eric I wish you could compile up a dietary section.


   
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(@john68)
Joined: 7 years ago
Posts: 2048
 

I agree and luv tinned fruit. A really tasty 😋 snack and treat is brown crusty bread mandarin oranges 🍊 and grate over dark chocolate 🍫 Then a tiny sprinkle of sea salt 🧂 

ileostomy 31st August 1994 for Crohns


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
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Scurvy!??? I'm really happy to hear that you at least have an easy way forward.

Posted by: @chelly

I don't know where i got this but I just remember not to eat oranges due to the membrane and such. I was told j would do better with canned fruits, veggies and juices. Unless I misunderstood. 

Re: Oranges, I eat them all the time (including clementines and mandarins). No real issues with the membrane, but I do also prefer to prepare them pretty much like this video:

The nice thing about vitamin C is that it's found in abundance in pretty much all coloured fruits and veg, often in quantities in excess of the 100% daily value needed. Including vitamin C in your diet can also help with iron absorption.

Pick whatever way will make it easy to consume these foods: blended, canned, juiced, cooked, or raw.

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


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

@veganostomy amazing because after I got the ostomy and lookin online it said not to eat those with membranes. I think it was my doctors fellow resident that told me I'd probably do better with canned fruits with an ostomy.  So all this time I've used juices in place and what canned fruit and veggies i can eat.i do eat watermelon though but not seeds. Now that I know you are eating oranges im.going to get some.  

Shute!! What else do you all eat for fruits and veggies? Fill.me in. 


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

Wow, Chelly! That is incredible. Good thing your doctor was on the ball. You’re right about making sure we’re getting all the vitamins and nutrients we need - who would ever have considered scurvy as a possibility? Glad that you’ve solved one mystery at least; hope the diagnostics can help with all the problems you’ve been having. Your poor body - no wonder you’ve been feeling fatigued! Maybe now you’ll start feeling a bit better every day. Thanks for sharing this.

 

Laurie

Just a semicolon


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

Chelly... Wow!  Well, that is so very  interesting! I know it's not the best news, but now that you know some of your puzzle, now you can work on healing. I always deal better with my health issues if I know what they are.  

Who would have figured Scurvy!! I'm so glad you are persevering to find out whats going on. That takes courage & strength!  Sometimes GP's do not make that an easy task.

You asked what we all eat... Fresh Oranges, I've discovered are harder on my skin then canned & Juiced. When your buying canned fruits, some (many) are packed  in a sweetened syrup that can pack on weight without even trying. If this is a concern for you then look for ones canned in their own juices or in the Diabetic section of the store. When I do eat fresh oranges, I do the same as Eric, Thank You Eric! After peeling the orange, the sections are as you know, in individual "little cases" as my Grand calls them, they're  hard to break down & will get hung up in the intestine or on scar tissue around the bowel where the anastomosis, (connected  bowel to bowel) is accomplished. 

I eat Pears &  Apples, (peeled) orange slices in the little tubs & only a bit of the syrup, I pour the rest in Juice for Gwen or in her fruit smoothies & frozen as popsicles. I can't resist local fresh fruits so I eat whatever I can get my hands on but I do prep them differently & chew them down to nothing. PLUMS are VERY fibrous so I slice them into 1/4 " pieces in a bowl collecting the juice as well. It's hard to skin a plum & they are so juicy & sweet, so I score the skin into tiny pieces, remove from the pit & enjoy. Bananas are a regular. Grapes, only seedless...you can't skin a grape, lol, but if your careful you can avoid swallowing the skin & spit it out.

I love watermelon as well as honeydew, cantalope. These are watery fruits great to help with dehydration & mixed in a salad bowl will keep about 3 days.  Everything in moderation & if your not sure how you react to something new, introduce slowly & chew, chew, chew!! Who doesn't love Strawberries?! I eat them fresh & frozen in smoothies.  If you chew long & good enough you can tongue shove the fruit back under molars & crush those tiny seeds. I do avoid fresh black & raspberries. I just can't digest the seeds.  That said, mashed & placed in a sieve & seeds removed they make great jams & fruit ssuces. 

I love Veggies but I've learned to cook fresh or frozen to a tender crisp level in a steam basket or steamer unit.  Steam until FORK, not knife tender.  This way you still get a good texture, not mush.  I love Asparagus, Broccoli & Cauliflower, but can only eat  it steamed & cut in 1/4 inch slices giving shorter fibers which are pretty tough to digest in asparagus, but cut short & limit, they don't bulk up as much in your gut & remember to mix all veggies with other foods between bites.   

I eat a fair bit of Greek Salad.  I layer coucous or brown rice, or barley & or ugh, ¿ the name... peeled cucumber, red pepper, peeled or tiny scored fresh tomatoe, thin slices of a protien cut against the fibre for the same reasons as Asparagus, , or fish of some sort. I love Cod but find it hard to digest so I cook Salmon or Sole, are far easier on my guts to digest.  Feta cheese & sliced Kalamata Olives. I use the bottled dressing for convenience. 

I think we limit ourselves more then we need to, but that said, go by your personal experience & trust & listen to  your guts.  Pain, cramping is a tell all.  When trying new foods, keep track of  how much & when you ate it & when its going in your pouch.  I go back to the basics after a new food has caused pain or a blockage & avoid it for a bit, try again then try only 1 tbsp. at a time verses my usual starting 1/4 cup for a new food.  I recently read that Butternut Squash is considered a super food for dogs. I've always eaten squashes of all kind. I started eating 1 cup approx. of cubed BButternut most days, cooked ofcourse. Its been three full months.  My very thinned hair is now growing back, I've have less eczema & dry skin. Also, I've started sleeping a bit better, though not tonight! Lol! Potatoes are great for the lining around our nerves. Bcuz My Dog Had a very picky tumny, I am Vet blessed to make her meals &;shes eating well & loves BN sq. . . I did a ton of reading on dog safe human foods. I find the easiest way to access nutrition info is just to ask your phone,  "Google,  what vitamins & nutrients are in...???" Usually the answers available. 

When it comes to grains & pastas. I always cook with more fluids then on the pkge. The way I see it, if you cook something that absorbs fluids to soften, then be aware that they will continue to absorb fluids inside of your stomach & bowel. If you don't like adding extra cooking fluids, then make sure you drink before, during & after a meal. Limit your serving & eat a salad like above with it or other cooked we eeveggies. I know it sounds rrediculous but I will still swish a meal in my tummy with a glass of water after eating. This helps mix things up a bit & I find I digest easier. This way, the fluid is mixed with your food not surrounding it. 

I know this is long, my apologies. But I do hope this helps anyone who reads it. 

Linda

Linda


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

@tigerlily yes it is amazing  as who would have ever thought? I had been to doctors and the ER twice before going to the doc who thought of vitamin C. 

I'm going to a new GP tomorrow and im.going to insist other vitamins and minerals be checked. 

I'm slowly feeling better but not all the way

 But any improvement is encouraging at this point.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
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@dlkfiretruck yes interesting to say the least. Who would have ever thought.  My hands would spontaneously break open and bleed. It was embarrassing and frightening  in public.  Then my toes even started the same. I had pictures to show you guys but they would not upload saying too large. 

Thank you as always for your detailed info.on foods to eat and your experiences with foods. Your posts are never too long for me. I appreciate the detail. Again thank you!


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

Posted by: @chelly

@veganostomy amazing because after I got the ostomy and lookin online it said not to eat those with membranes. I think it was my doctors fellow resident that told me I'd probably do better with canned fruits with an ostomy.  So all this time I've used juices in place and what canned fruit and veggies i can eat.i do eat watermelon though but not seeds. Now that I know you are eating oranges im.going to get some.  

Shute!! What else do you all eat for fruits and veggies? Fill.me in. 

A lot of the advice is meant for those who are fresh out of surgery until about a month out, but most people are given the information as if it needs to be followed for life.

Yes, some people will have more difficulty with bulky foods, especially if they have a history of blockages or strictures. But most ileostomates and nearly all colostomates don't have to give up too much (if anything) once they are healed up and comfortable doing so.

Here's a salad I ate the other day.

Head of romaine, dried prunes, carrot, cooked chickpeas, apple, clementine, frozen berries (yes, on a fresh salad 🤣), and some topping. The whole thing was approx. 2lbs worth of fruit and veg.

 

1713797455-Salad-snack.jpeg

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


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

@veganostomy that looks delicious Eric! I've had salads but very infrequent due to the diahrhea get from the lettuce. See those shredded. Carrots scare me lol! I guess if we chew real good though. Thanks for letting me know i can venture out now and eat some different things.  My doctor wants me to do nutrition therapy now. So many appts . I have like 10 I have to schedule.That salad is making me hungry!.


   
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VeganOstomy
(@veganostomy)
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Posted by: @chelly

See those shredded. Carrots scare me lol! I guess if we chew real good though.

The one in that salad was raw, but I recently learned that you can cook spiralized carrot like pasta! I've done it in the microwave and boiled and it's much easier to chew and pass through the system!

Posted by: @chelly

My doctor wants me to do nutrition therapy now. So many appts . I have like 10 I have to schedule.

Good luck! Nothing but benefits from that.

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


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

@chelly... lol, don't hold off on carrots Chelly.  They have a great bunch of vitamins in them & eaten raw on a salad is just fine. Plus they're great for the eyes  

The carrots in Erics pic make me shudder a bit too, but its bcuz they were grated thru a food processor the size of the blades on mine, great if your steaming them or raw if you have your own teeth! Lol!  Hand held food graters fortunately have 2 sizes of shredding blades on them,   I use the smallest one & have never had an issue digesting them. All in moderation.  I grate right over my salads so I get the carrot juices too.   

I know I say it often, but the best thing I learned about eating with an ostomy  was from Eric, put the fork down between bites. I find I chew my food so much better doing that... thank you Eric!  

Linda


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

@veganostomy the boiling in the microwave sounds a good idea for me. I start my nutrition appointment today over the phone. I'm very interested in getting this weakened body back to normal. Thanks for your ideas and suggestions.


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
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@dlkfiretruck hi again, I do eat canned carrots but probably not enough. Your suggestions are good for me, I thank you and all who contributed feedback..  When I left the hospital I took it that this way the way i had to eat  the rest of my life and I was so worried about blockages and that was  2018 that i had my first ileostomy. 

Lol what about beans are they safe?.I'm sure will contribute to gas. Smell and ballooning but gosh I love them. 


   
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VeganOstomy
(@veganostomy)
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Posted by: @chelly

what about beans are they safe?.I'm sure will contribute to gas. Smell and ballooning but gosh I love them. 

I eat beans several times a day. Not an issue.

Gas may increase if you aren't used to eating fiber or beans in general, but as your microbiome adapts, this normalizes.

If are starting out with beans, start with smaller quantities and chew well. I'd also suggest starting with a type that is softer (canned will work well). The blockage that put me in the hospital was caused by eating too many black beans too quickly, but I learned my lesson.

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


   
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Chelly
(@chelly)
Joined: 2 years ago
Posts: 552
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@veganostomy thanks Eric. I think im.experiencing a small blockage as we speak. I don't have my top teeth and hard to chew good. I made sloppy Joe's last night and the canned mix had peppers in it and I think that is what did it. I tend to swallow food. I need to start either pureeing a bit or eating slower. Had a good nutrition therapy session with a lady that's familiar with ostomy today and I think I will be getting meals on wheels services but not positive. If I do then they will mash things and do a special.diet and deliver the meals to me. She also sent me charts for everything including sample meals.


   
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