Comments from DR freaked me out!!

[Makena's Mom]

I applied for FMLA today and in order to do so, I needed our Ped GI to fill out some forms. One of the questions was, Explain care needed and why such care is medically necessary.. he responded with, Without IV therapy the patients fistula will not heal and she is at risk for chronic pain, complications and death. DEATH. My heart sank. Is this for real, can you really die from this?? Or is he trying to boost my employee benefits??

 

[DustyKat]

The short answer is yes, you can die from Crohn’s. If you think about the complications that can arise from Crohn’s…obstruction, perforation, abscess, sepsis…all these things are life threatening and life ending if not treated quickly and appropriately. BUT that is the key here, while ever your daughter is the under the care and monitoring of doctors then the chances of that happening are very, very, very slim indeed.

Take my own daughter for example. She went undiagnosed for 18 months and we came within a whiskers breadth of losing her. She was diagnosed on the operating table, her bowel had ruptured and she was septic. BUT she only got to this point because she was undiagnosed and had never received care and treatment for her condition. Once diagnosed though, and under the care of specialists, I have no doubt in my mind that we will avoid ever reaching that point again.

Dusty. xxx

 

[Tesscorm]

Okay, I would be freaked at that too! :ghug: I think he probably wrote that for both reasons you mentioned.

Insurance-wise, it probably helps. As far as death being a possibility, you need to put it into perspective. As with many, many illnesses, if they are left untreated, they can lead to death. Illnesses that are untreated will eventually lead to worsening conditions, complications, involvement of other aspects of health or other organs, etc. Off the top of my head, diabetes, an allergic reaction or even the flu can lead to death if not treated.

My son has crohns, so, yes he is facing a chronic illness with possible future complications but I don't consider him to have a life-threatening illness. I do accept that he MUST be monitored and treated for the rest of his life but I do not expect crohns to shorten his life. Actually, I remember when he was diagnosed and the ped GI was explaining crohns to him, one of his first sentences was 'you have crohns, it can't be cured but you won't die from it'.

:ghug:

 

[Jennifer]

When filling out forms like that its good to give worst case scenario possibilities. Without any sort of treatment whatsoever death is a possibility yet with modern medicine it can be prevented as Dusty mentioned. Your daughter is being treated so I wouldn't worry over it.

I was told that I would have died within two years or less if I hadn't gotten proper care. I was bleeding a lot and wasn't absorbing anything making me lose a lot of weight. If I hadn't told my parents that I was bleeding when I went to the bathroom then things would have been worse.

 

[Makena's Mom]

I appreciate your responses. You're all right, maybe I needed to hear it from someone else. This is all so new, I'm still processing... Its a little overwhelming at times.

 

[Tesscorm]

I'm sorry, I haven't had as much time lately to be on the forum so I'm not really familiar with your daughter's story. But, I do remember how overwhelming the worries were and how frightening the new future that I was facing seemed to be. It does get easier and the more you learn, although the learning process can be frightening itself, will help you. As you see the treatments start to work, that will also help alleviate your worries immensely!

The more you understand about crohns, the more in control you will feel. Although some of the stories and complications you will read will be scary, you will also learn that crohns effects everyone differently. Your daughter will not have every complication you will read about nor every symptom nor every side effect, etc., etc. Also keep in mind that most of the people who come to this and similar forums are those who are having problems; there are many, many people out there, with crohns, living life to the fullest and not coming to the forum with questions or concerns.

My son has done quite well since his diagnosis, a few minor blips but nothing serious at all. I continue to come to the forum because I want to continue learning about crohns (there's so much to learn! :yfaint, I have made some wonderful friends here (I'm sure you have found their support as well ) and I hope I can help sometimes by sharing some of my experience with others.

Try to learn but try to deal with one thing at a time and not 'borrow trouble' (not an easy feat for moms! :ybatty

:ghug:

 

[DustyKat]

It will be okay hun, really it will. :ghug:

Knowledge is power and with that power comes the ability to be the best advocate you can possibly be for your daughter. A lot of what you read won’t ever apply to your own situation but having read it and knowing it makes for a mum that will never leave a stone unturned in ensuring her daughter receives the best care and the best chance of achieving remission and kicking Crohn’s in the butt!

Tess and I have travelled different journeys just as we all have here. You will find others that have very similar stories to your own and those that are worlds apart but we are all here to learn from each other, support each other and when we are feeling overwhelmed just as you are now to say…your baby will be fine. :ghug: I know you won’t feel it just now but the laughter will come back into your life and when that happens we will be here for that too! :lol:

So just look to that form and those words as a means to an end and nothing more. :heart:

Dusty. xxx

 

[crohnsinct]

Yep! My daughter had untreated or "rather we have no clue she has it" Crohns for about two years. She had severe diarrhea and bleeding for two weeks and never told us. When we were sitting in ICU on a Tuesday we were told she wouldn't have survived through the weekend had we not brought her in. Who knew? BUT she was put on Remicade and it has been pretty much smooth sailing for the past two years. So yeah, untreated could equal death but not likely because you are handing it!

 

[Brian'sMom]

I also agree that untreated or unmonitored crohns is when it's dangerous.
Also wanted to say Makena's Mom that your avatar picture is adorable!! So sweet