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Living with IBS as a family


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#1 Ilyria

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Posted 04 June 2020 - 07:18 AM

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For me it all started soon after giving birth to my youngest daughter. Feeling sick all the time, loosing weight, being unable to eat or drink anything including water without running to the bathroom. I tried going to the doctor who said it was just a stomach bug and nothing serious. Well she was wrong..and after 6 months of being sick and growing weaker and weaker every day we finally went to gastroenterologist who took one look at all the blood work I had with me and said I most likely had colon cancer or Chrohn. We were devastated since I was at the time 31 years old and we had 3 small children. After extensive testing for all sorts of things, several biopsies, colonoscopy, endoscopy, million blood works (they took at least 2 liters in total I swear :)) they found NOTHING and it was, as you can imagine, huge relief for my husband and me but the doctor could not believe it he was so sure that it was something more. They said my bowels were paper thin..transparent and with tiny holes in them. So our first family friend became Leaky gut, next they said my stomach and throat lining is badly eroded so Reflux and they tested me for Celiac(3 tests including biopsy) and I was negative but they concluded I definitely have some type of gluten sensitivity. Wow!
It took some time to accept that things will never be the same again but we were adamant in fighting this thing. I lost so much weight (12 kg in 6 months and I was thin to begin with) I was barely able to do anything, I could not drive or cook or clean the house because I was so hungry and tired. More than half of my hair fell off one time when my husband was helping me wash it..the haunted look in his eyes almost broke my heart.But we kept reading about IBS and searching for tests and therapies-doctors we talked to did not believe me or they've never heard about it so we did everything alone. I could not travel because of my constant diarrhea so we bought a Porta potty and keep it in the car. We did the best we could but still BM 8-12 times a day, during a flare up 15-20 it was exhausting. I would be driving my kids somewhere and would be forced to stop the car by the side of the road for BM and/or throwing up. Tried FODMAP diet and modified it to my triggers and needs.It helped a a lot and we still eat a Fodmap based diet today. I use probiotics daily-now only two strains before I used plenty and they are good for me. Learned about SIBO and got tested positive. With the help of a holistic doctor from another country I recieved a protocol and natural atibiotics. The treatment helped and my next test was negative. With that I went into remission for 9 months :)
It was good living without worries for a while I must admit. It's the little things you miss the most.
Now my IBS is back slightly changed but still as annoying. Lost one third of my hair this time and 8 kg so far. Doctors are more worried this time and testing me for some tumor markers they didn't last time. I am hoping with all my heart that they are wrong and that it is "just" ibs.
I am too scared to think about what are we going to do if they find something..tomorrow will be my 35th birthday. I hope it will not be my last one.

#2 Kenny

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Posted 04 June 2020 - 09:22 AM

Hello llyria ,

 

I'm sorry you have to go through this .IBS is bad enough to deal with by itself and I am sorry that you have to go through these additional tests. We hope and pray that its nothing more serious . Please let us know once the results are in , prayers are with you.



#3 Ilyria

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Posted 05 June 2020 - 12:37 AM

Thank you Kenny! You are very kind :)
I'll be sure to let you know as soon as I find out what my results are in a week or so they said.

#4 Ilyria

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Posted 05 June 2020 - 01:20 AM

It's my birthday and I do have great news today :)
One of my blood tests came back this morning with excellent results. I tested negative for Diabetes II so it is a small victory and one less worry for us! Now I only need to figure out why I pee so much more then I drink :) :)
They are testing me for all sorts of things again since my flare up really escalated at the end of April and I've spent most of May in my bed barely able to walk-so tired and hungry and sick all the time. It is a good thing we were in lockdown and kids were at home with me and my husband was comming home from work and cook for us every day. It was a rough month for all of us. Anyway..something is definitely not ok so now they are looking at my internal organs that are just a bit "off". My GP wants me to go to a bigger hospital in a bigger city for a second opinion-maybe it could be malabsorption or something like that.
I am so happy today because of this test! Every time I test negative for something I feel like I dodged a bullet! Today is going to be great!!!
Also this Silicol gel that I'm taking helped me to get out of bed and drive again..I eat more and pain is gone. It's still early but we hope for the best..

#5 Kenny

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Posted 05 June 2020 - 04:12 AM

That is wonderful news llyria , looking forward to more good news from you ! Wish you a very happy birthday !!



#6 Ilyria

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Posted 07 June 2020 - 07:48 AM

Thank you Kenny!

#7 Ilyria

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Posted 08 June 2020 - 01:11 AM

This was a very difficult night for me..I feel broken and defeated. I did something wrong and still don't know what but the pain in my chest was unbearable. I wondered if I should make a call to an ambulance but decided against it. Don't know if it's reflux or costochondritis-it could be both I supposse. It was awful..the shortness of breath and the pressure on my chest were both painful and scary. This feeling of helplessness is terrible

#8 Ilyria

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Posted 08 June 2020 - 01:12 AM

Also not being able to breathe scares you shitless

#9 Ilyria

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Posted 12 June 2020 - 01:26 PM

It has been a rough couple of days for us I must say. I ended up in ER few days ago for heart palpitations, chest pain and shortness of breath but no heart attack-EKG was fine. It was scary as hell! I had a feeling that I will die alone in my house and I panicked so so much. My daughter comes home from school first and the thought that she could come and find me..I have no words. I called my doctor and they said they cannot send an ambulance and that somebody drives me to hospital. My husband was in another town so a friend from work came to get me. They gave me some drugs and sent me home-said it was definitely not just ibs. Possible thyroid problem my doctor said. Then we went to this new endocrinologist (day after) because there are also other indications that this may be thyroid related. She ordered a lot of tests next week so we'll see..I ended up in the ER again but in a different hospital in a bigger city. My chest is killing me! They ruled out my heart and lungs wich is always a good thing and concluded that I am too weak (I have almost no body fat wich is pretty bad) to function and that I must eat more and check out thyroid and sugar level as it could be to low. Still I am not sick enough for them to actually keep me in the hospital so I am home again. I wonder how long will this last. My stomach and BM are not so bad compared to the rest of my problems I think because of the silicol gel. I upped the dose a bit 3 days ago and ate a bit more today then yesterday. I even walked in the garden for a while and read a storybook to my kids. My husband firmly believes this gel is working and enabling me to eat so we now have another bottle in the house..just in case :)
I called 2 private hospitals today if they could take me and do a full diagnostic and everything and find what is wrong with me. One replied that they cannot..now waiting for the other reply.
Today is a better day then yesterday so we are grateful for that. Tomorrow is our 15th anniversary and we'll celebrate with Ensure plus :) strawberry flavor

#10 Ilyria

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Posted 14 June 2020 - 09:59 AM

Wow..this is turning into a diary of sorts :)
Yesterday was a good day-one of the best lately actually. My husband washed my hair and I still have it :D
Just kidding but in all fairnes not much fell off this time. I take it as a good sign. I ate almost two full meals and that was a nice experience too. I even had one empty pancake that tasted like heaven..I forgot how it feels to eat anything with sugar inside :)
It feels great to be able to eat and walk around the house again. I missed that..truly I did. Maybe my husband is right and silicol is working its magic. A bit more and I could end up constipated..hmm..need to be careful about that.
I think I'll have to "quit" my job for the time being. I managed to get to the office only 2 times in May and it's not so easy to work from bed so I think this will be sick leave or something similar. I miss being able to work :( and I love my job. Hope I'll find what's wrong with me and fix it soon.
Thank you for reading this!

#11 Ilyria

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Posted 16 June 2020 - 06:12 AM

Today my results came for that tumor markers test and it is good!!! Doctor says it's ok (for now) and that I can relax. I am somewhere in the middle, but still within allowed range. Yaaay!! I am soooo sooo happy right now! :D :D :D

#12 Ilyria

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Posted 16 June 2020 - 06:17 AM

This morning I had an appointment with my endocrinologist and she took 4 vials of blood for hormone tests and food intolerance test. Looking forward to my next appointment..I am really curious at what she will find.
I think silicol is working its magic and I can eat a bit more every day. Every day I feel just a bit stronger and better then the day before and this means the world to me.

#13 Ilyria

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Posted 18 June 2020 - 12:12 PM

More news from me and most of them are good :)
Yesterday I had an ultrasound regarding a big cyst and a couple of mioms in my uterus just to be on the safe side and also to confirm this is in no way related to possible ovarian cancer and/or endonetriosis. Since the symptoms are almost the same and this what I have still looks like much more than IBS. So yay!! No bad results in this area and another win for me! Doctor tells me I am healthy like a horse..ah the irony. The thing is my chest still hurt and they hurt a lot, like my skin is overstretched and it will break if you look at it wrong. I got a funny feeling on my right side an after a brief inspection there were bumps there that should not have been-like a swelling. Will this crap ever end?! I mean do you have a feeling that your body is just not cooperating anymore?
Because THIS is ridiculous. I am falling apart piece by piece. By the time my husband came home my chest was bluish like a giant bruise and extremly painful. Naturally I went to the doctors office in the morning she could not believe this. Said she never saw something like that. My right side from the midlle of my sternum to my neck and right shoulder is VISIBLY swollen and bigger/higher then the left one. Unf***ing believable! Of course they did an ultrasound of my breasts and chest -hurts like hell when you have ridges popping out from your chest like a small alien caterpillar party. They also made an X-ray of my lungs and ribs to see if anything cracked. Fun times indeed. The conclusion is: costochondritis-severe one of course because why not???
I got it by doing something exhausting or by excercising or they don't know..I should rest more. It was most likely by trying to walk up the stairs in my own house or some other normal sh*t people do. So now I look like a pale underweight lady with a deformed chest. I could scare someone half to death in the dark just by standing there. So yeah..not a boring day today :)

#14 Ilyria

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Posted 20 June 2020 - 06:30 AM

Just a tiny update from me :)
I have guests right now..my parents and my sister with her family came to see me. Our house is full of people :) :)
It is surreal and I did not see that one coming. I mean I am happy that they are here but still surprised that they drove 300 km just to see me and check up on me. They are slightly shocked I must admit and apparently I look so fragile they don't want to hug me at all..too breakable. I guess they hoped I was better than I am. The best thing is that I actually am better then I was a week ago courtesy of the silicol gel. I wonder would I be at home at all without taking it. I don't want to imagine how hard would it be for them to see me like that-just withering away.. I try to eat as much as I can and it is not as difficult as it was. I am proud of myself for every extra bite :D
My husband went sailing this morning and I wish I could've gone with him. He needs a break from taking care of me and I'm happy that my family can do it since they are here. I miss such things and I miss outdoors a lot. We were so active when we were young and we tried to continue with that lifestyle with kids too. We were unstopable until I got sick. I need to beat this-whatever it is because I can't wait to be like that again!!

#15 Ilyria

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Posted 25 June 2020 - 07:52 AM

Hello everyone!
Good news from me :D
My lab results finaly came and we went to see that endocrinologist yesterday afternoon. It is not thyroid related wich is excellent news! Even better the doctor said based on my blood test results that she is 95% sure that this is "genetic problem". Basicaly I have extremely low levels of folic acid and this is most likely the cause of my symptoms -most of them if not all-even the anemia that I suffered from for 32 years ever since I was a child is linked to this for example and some other things that bothered me and are not connected to the ibs thing.. Some people apparently have a genetic mutation that hinders their body from properly and efficiently converting folate to its usable form. And it seems I am one of them. Doctor said it's a rare condition and that this is the lowest folate level she ever saw. She said I need an appointment with a hematologist to confirm this and to determine how to boost up vitamin B9 levels. So it's treatable and managed through B9 suplementation.
After this is done in a few months I need to re-evaluate all my symptoms and food triggers to see if I have IBS still or not. She said my quality of life will improve big time and that I will be healthy again. I'm so excited :) :) :)

#16 Ilyria

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Posted 30 June 2020 - 09:56 AM

This is my hematologist appointment update :)
It was good and I really like this doctor. She explained everything to me in detail and I am so happy I have a plan to follow to tackle this illnes. At least partialy! It was a two hour ride to get there so 4 hours in the car and I was ok. Not one stop for BM was necessary thanx to silicol gel. So so happy that I found that product and that it's working for my ibs.
Anyway the doctor said that my B9 levels are dangerously low and that I must take prescription pils for this. In 4 months I will know how much of my various symptoms were caused by this and what is ibs related. I can't wait to find out :)
I have to make a genetic test for this mutation and if I have it I'll be taking B9 forever and if not she sad it would be wise to test B9 levels every year

#17 Ilyria

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Posted 30 June 2020 - 10:39 AM

My chest still looks deformed but I doesn't hurt so I don't care. My husband says you can't notice it unless you look at me :) :)
My overall condition improved so much that I got back to work in the office for 2 hours a day(5 days now and counting!)..too tired to work more but if I continue to eat and hopefuly gain some weight and these B9 tablets help me I could be good again.
I picked up kids from the summer camp and the youngest from kindergarden all by myself! I'm very proud of this and it was hard but I did it!! I'm in bed now and exhausted but it was worth it :)

#18 Ilyria

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Posted 05 July 2020 - 03:34 AM

It's been a long week but also a good one :)
Manny things have improved and there are still those that bug me but I'm not complaining-we all know how quickly the tables can turn. Looking back the past few months have been awful and I hope it never gets that bad again.
I've been taking my B9 tablets for 5 days now 2 times a day per doctors orders(recomended dose is 1 a day) and I can see and feel its effect. I have more energy, my hair is not falling so much anymore, my skin stopped forming bruises on touch, my mind is sharp again, I can actually talk to people and I don't repeat my sentences unknowingly, I can remember things clearly now, my hands stopped shaking completely :)
I got back to work as I said :) and I missed it so so much. I have about 4 "usable" hours in my day now-I know it doesn't sound much but to me it means everything.
I can take a bath now and wash my hair on my own :) and I spend a little less time in bed. I can cook simpler meals and drive a car and I went to the store a few times. Yay!!!
Unfortunately, even though I eat a bit more due to silicol gel and my ibs problems are under control I'm still loosing weight just not as fast as before. I cannot digest fat so that is a big problem obviously because we are not meant to live without it. I have problems with regulating my body temperature and various other issues.
I often wonder if they are all connected somehow or is it just coincidental..

#19 Ilyria

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Posted 11 July 2020 - 02:31 AM

Hello :)
It's been 10 days of taking B9 and I feel good-not exactly like a "new" woman but maybe like a "second-hand" one :D
We'll see how things will develop but for now I couldn't be happier. I'm still more tired then I want to be but less then before. I work every day now( part time) and drive my kids around and cook and go to the supermarket to buy groceries. So so excited that I can do that!!!
I laugh again and socialize with my family and every day I feel more like me. We went to a BBQ at a coworkers house and I actually ate food there wich is great. There were 11 of us total(we follow all recomendations to the letter) and mostly I sas lying down on their bed but I managed to talk to people for an hour so it was a huge success! I have no more bathroom emergencies and I think I finally stopped loosing weight. We had to drive to a nearby hospital few days ago and I wasn't even nervous.
Silicol gel and B9 are evidently working for me! Hope to have even more good news in my next post :) :)

#20 annie7

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Posted 11 July 2020 - 05:30 AM

so happy to hear this, llyria!  that's wonderful!


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these are just my own thoughts. for expert medical advice please contact a health care professional.






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