Very discouraged

[pinkoholic]

Hi

As well as problems with IC ive been getting frequent painful mouth ullcers. I mentioned them to my dentist and she sent me to an oral consultant for some blood tests.

My results have come back and ive received a letter saying that ive tested positive for the parietal cell antibody so I have pernicious anemia, it also mentioned that my ferritin levels are really low so I need to take iron supplements.

I spoke to my doctor and she said that if you have the parietal cell antidody it means you body is attacking the cells that absorb B12 and this means that I need to have B12 injections for the rest of my life and that I need more blood tests to check my B12 levels. The oral consultant also said my ulcers were also caused by my body attacking itself.

I feel so miserable and im scared as to why my immune system is attacking healthy cells. Ive read that IC can be caused by the immune system attacking the bladder lining and think this is the case with me. Ive got IC at the moment and when I did my lab sample I noticed that there is a lot of white floaters/particles in my wee that look like bits of tissue. There is also traces of blood on the toilet roll after I go to the toilet.

Does anyone know if there is a link between IC and pernicious anemia?

Claire

[Skynard]

I am so sorry you are feeling down. Please know you are in my thoughts and prayers. I am sitting here with the flu and feeling lousy. Most mornings I don't want to get up because I am not sure how much more I can take. I just ask God to let me get dressed and put my hair in a ponytail. Anything other than that is a good day. I don't know how to fix your issue, but I am here for you if you want to PM me anytime. It helps just to unload sometimes.

Wishing you well on your journey.

God Bless.

[tigger_gal]

HUGS I hope you are feeling better soon.

[purpletomorrow]

You poor thing!

I used to get horrible mouth ulcers and they hurt like hell. I did some reading on the internet and learned that SLS, Sodium Laurel Sulfate, the foaming agent, in toothpaste, was responsible for much of them.

I changed to Biotene Toothpaste, which has NO SLS, and now I get tiny mouth ulcers about once a year instead of large painful ones every week or so.

Please do give it a try, it might help you like it did me.

I also gargle with Colgate Peroxyl when I have mouth ulcers and it makes them go away faster. Here's hoping that helps you too.

Have you tried CystoProtek and DK Aloe Vera for your IC? Those are the two supplements my IC specialist recommends to all his IC patients, and they've helped me immensely.

Pain sucks and it takes all the joy out of life. I hope you get yours under control soon.

[sue041]

Hello I read your post and had to ask if you are taking Elmiron? The reason I am asking is because when I took it I had ulcers in my mouth and nose and shortly after I quit taking it the ulcers healed up.
I know how hard it is to find something that works for one thing and then another problems happens. I have the implanted pain pump now going on ten years, I also have the Fentynal Patch and take oral pain medication.
It seems like something is always going wrong with different parts of one body. I wonder if I never had I C. if I would have all these other things going bad.I know some of it is aging, I am 68 years old and don't know how much more I can take. My sister wants me to try and get off some of this medication I am on, I know in my heart it is taking a toll on my life and whole body, it is easy for one to say cut back or even stop, but they do not know how I feel and to not be in control of your feelings and hurting so bad I do not know which is the best. I mean it like I use to be fun to be with, now I am miserable feeling and probably make other people feel bad for me.
I am on so much medication that one thing has side effects and then you must take something else to counter act that problem.
Thanks for letting me ramble on, sure hope there are better days ahead.
Take care and God Bless you all.
Sue041

[sailawaygrl]

Laura,

I too use the Biotene and have had good response with it. I started using it because I was worried because my meds cause my mouth to stay so dry, even with all the water I drink. I was worried about my teeth and gum health. It seems to help, I don't have any mouth sores and I am hoping it shows at my next check up. I would reccomend Biotene to anyone using some of the meds that dry out your mouth.

Sandra

[purpletomorrow]

Hi Sue041,

I solved the mouth ulcer problem last year. I only just started Elmiron last month.

Take Care, Laura

[curlycue]

wow I get those as well, what a trip? were can I get the Biotene Toothpaste? my daughter gets them as well and she is only 19, what kind of supplements can she take?

[purpletomorrow]

YOu can get Biotene toothpaste at WalMart, Target, drugstore.com, or Amazon. I use their mouthwash too because my meds dry my mouth, and I've read that causes cavities.

[pinkoholic]

Hi Everyone

Thanks for all your kind words and suggestions x

Im not on any medication for IC yet. I havent been officially diagnosed with IC but my doctor is sure thats what I have. Ive been referred to an urologist and my appointment is in 2 days time so im hoping I get started on some medication then.

My bladder problems seem to flare up every 2-3 weeks and lat for 4-7 days. I suffer from frequent urination and constant abdominal pain. Sometimes I have back and groin pain and just feel really unwell. I always have blood and protein in my urine and my sample always come back clear from the lab culture.

As for the mouth ulcers I seem to have them constantly :( Im not sure if we can get the toothpaste you mentioned here in the UK but will definately try to find some. My dentist referred me for the blood tests to see if there was some medical reason for them and thats how they found out that I have pernicious anemia and low ferritin levels. Im a total needle phobic but have been told that I need lifetime B12 injections and long term iron replacement.

Im 34 and feel like im always ill and its starting to affect my job and family life. Im having to go to work during flares because im scared to take anymore time off. Im also worried incase my two kids have also got pernicious anemia. It can be heriditary and life threatining if left untreated so they both have to go for tests.

Kind wishes to you all x

Claire

[purpletomorrow]

I wonder if cooking with a cast iron skillet would improve your iron levels. I have repeatedly read that you get a lot of iron in your food when you use cast iron skillets.

If you can't find Biotene toothpaste, look for a toothpaste that does NOT have SLS in it.

[sailawaygrl]

Laura,

I have read that about the iron also. I don't know if it would be enough iron though. On the toothpaste for dry mouth, you are right, dry mouth will cause cavities. I already have had a lifetime of problems with cavities, even though I am very good with taking care to brush and floss. I am just one of the unlucky ones with soft enamel. Errrr.

Claire,
If you can't find the Biotene, you can also ask your dentist for a prescription toothpaste. My Dentist said she might do that if the biotene doesn't do the job. My Dad has some of the prescription kind that has a lot of fluoride and he has to leave it one his teeth for awhile.

I also worry about the fluoride because of all the bottled water I drink. City water has added fluoride and with a dry mouth and less fluoride, I am a bit worried about my teeth. I can't afford any more problems. (financially or mentally!!)

I wish you the best for you and your children. I would hope that finding out now if they also have what you have would be beneficial to their treatment. Hang in there.

Sandra

[curlycue]

Thanks I appreciate the info.

[an0bgobeloba]

i use tom's of main toothpaste. i know they do have it at walmart.

[HeatherP]

HUGS I hope you are feeling better soon.
That picture is so adorable. It could cheer anyone up.

[HeatherP]

Pinkoholic,
I was just wondering if you're feeling better and if you've tried any alternative methods like acupuncture or a good Chinese herbalist.
I would recommend you try it, since it sounds like this is a whole body thing.
Good luck.
--Heather

[baaaby11]

I wonder if cooking with a cast iron skillet would improve your iron levels. I have repeatedly read that you get a lot of iron in your food when you use cast iron skillets.

Really? I do a lot of reading about food/cooking and I've never heard this before. How interesting!

[HeatherP]

I have heard of this. My cousin was told her iron was low and was advised to cook with an iron skillet.