Monika's story

[Monika Anna]

Hi, my name is Matt and I am writing this on behalf of my wife Monika. I will try and keep this short as possible although I could write a book on her life with Crohns. We have one beautiful daughter.

Monika has had Crohns for 22 years, we have been together for 12. Monika is currently in ICU for severe sepsis as a result of complications from Crohns and multiple surgeries, currently on mechanical ventilation, dialysis etc. etc.
Currently she has endured 2 years in hospital (3 different hospitals in 2 cities)with countless months in ICU, not knowing if she will make to the next day. Monika has tried all the drugs and then some with a very low succes rate with a couple, all the diets and now has been on TPN for 2 and a half years, not to mention countless doctors with differing, stupid opinions and a few I wanted to punch in the head, and some who would do anything for her and we are forever thankfull for their skill and compassion.

We as a family have basically lost everything, our own home etc. but we are together in this as material possessions basically don't mean anything anymore, amazing how things change your outlook on life and what really matters. Also you find out really who cares whether it's family or friends. Our daughter has missed 3 birthdays and 2 Xmas's without Mum being at home but is celebrated at the hospital. Hopefully Monika will be out soon so she can give you her story as I have condensed it somewhat.

I just wanted to share this with others, this evil disease has taken its toll on my beautiful wife but she will fight on. She won't give up!

Thank you, Matt.

 

[Cross-stitch gal]

Just wanted to say hi and welcome you Matt. You have definately come to a good place for support and information. Your words here show how much you love your family. I know that I have no idea what I would have ever done without my husband. I'm sure your wife would say the same. I'm sorry to hear that she's in the hospital again and here's a hope that she'll be able to be out and with you and your daughter soon. Take care.

 

[David]

Ugh, Matt, I'm so sorry to hear about the terrible time your wife has experienced and the toll it has taken on your family My heart goes out to you all and she will be in my thoughts.

When she regains her strength, I wonder if she's be a candidate for stem cell therapy? It's sort of a last line of defense but people have had wonderful results.

We're here for you and your family.

 

[Monika Anna]

Thank you for your thoughts. It really has turned all our lives upside down but you just keep going. Monika does not let the disease define who she is but is something that she just has to deal with, as there is someone always worse off than you as she would say. Social life? She just wants a normal family life! Monika would always strive to maintain a normal life as possible and not use any excuses, but sometimes it all becomes too much.

Very much an outdoors family we enjoy 4 wheel driving, camping, mountain bikes, fishing etc. we always got out when we could, Mon even came out four wheel driving when she had weekend leave from the hospital 3months ago! It took it out of her, but better than sitting back feeling sorry for herself, she got stuck in as much as possible!

We wish we could do more and continually make plans, although they end up being scrapped, but it does'nt hurt to have a go anyway. We just need to get through this latest obstacle and try something else, but as you all can appreciate treating crohns and treating continuing infection is somewhat of a balancing act, forget surgery, no one will touch her now, as numerous surgeons have said it's a mess and keeps falling to bits. The stem cell therapy may be another avenue for her?

I don't have Crohns and could not imagine how it feels for Monika, but I have seen the devastation caused by it and it breaks your heart to see a loved one go through so much pain and suffering. I hate having to see our daughter go through this, and it kills Monika not being there for her.

Anyway enough gloom, if you can get out and live your life, do it! I know she would, and she will again!
Thankyou, Matt,

 

[Keepingfaith]

I just wanted to swing by & say welcome to the forum!:ghug:

A lot of family members of people suffering from this disease use the forum & I know that you, as well as your wife, will receive all the support you need! This forum is filled with knowledgable, kind people!

I am SO sorry this condition has given your wife & family a hard time(understatement of the year). I pray for other crohnies & their families all the time!!

Your family is so strong & I think I have a new role model!

Take care! :Karl:

 

[David]

Matt, I don't know if she would be a candidate for stem cell therapy or not, or even if it's being trialed in Australia, sorry . But it wouldn't hurt to ask.

*hugs*