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Crohn's Disease Forum » General IBD Discussion » My ramblings on this life with IBD....


07-19-2010, 05:35 PM   #1
Silvermoon
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My ramblings on this life with IBD....

As I read through the forums, I am finding more and more people with either undiagnosed disease, or diagnosed with one form of disease at first, and then the diagnosis changes....

So I started thinking to myself, "I was diagnosed 24 years ago after 2 simple tests... was I misdiagnosed? Is it really that hard to diagnose? Why are all these poor people having so many problems???"

After many, many links and searches, I think the following two links describe the two diseases the best (and simplest):

http://www.nlm.nih.gov/medlineplus/e...cle/000250.htm

http://www.nlm.nih.gov/medlineplus/e...cle/000249.htm

It looks like it can still be confusing, but it seems there are some basics that really differentiate the two:

*UC affects the mucosal lining, so usually will not penetrate the bowel wall causing fistulas.

*UC seems to start in one spot and spread out from there; CD can have healthy spot of bowel in between diseased spots.

*UC seems to remain in the large bowel (the colon); CD can show up anywhere through the digestive tract.

So it seems I wasn't "misdiagnosed" in the first place (going on this criteria)...lol.

But I hope, for some of our newly diagnosed members, this tiny bit of information may give just a bit of insight.....

Or it might confuse the hell out of you even more...lol...

Either way, it is important to keep in mind that the underlying cause still stands that it is our immune system...not something we ate, or drank, or chewed on when we were a kid.....

It was going to happen to you anyway.....

Maybe, possibly, something you ate or stressed out about triggered the symptoms more than would have happened if that incident had not happened....but basically...it was still there...just waiting.....

To those who have had their doctor's say "Food has nothing to do with it"...well...to a (very minimal) point, the doctor is right, in that nothing you ate, or will continue to eat caused the disease..... but some things aggravate or irritate it, and those items will be different for different people....it is going to be up to each of you to figure out what those foods are.....

For example, unlike many on here, I have no issues with milk products, fiber, or veggies. FAT however, kills me. So my dairy products are low fat/no fat products (which, incidentally, actually have higher levels of lactose in them...)

Sugar causes diarrhea in many...for me, in moderate levels, it helps control the diarrhea a bit.... if I go overboard, then I get diarrhea....

There is no cure...there is remission...but the longest I have heard of remission is about 15 years. My brother, a triathlete, the epitomy of health, has been in remission for 12 years.... two months ago, with no change to his lifestyle whatsoever, the disease struck again.....

In a lot of ways, I guess what I am saying sounds a bit depressing... like nothing you do will make any difference...and that is NOT what I mean at all....

What I mean is....something you do...watching your diet, exercise, decreasing stress levels, may have some impact on how you live with this disease..it might offer you so relief for long periods of time so that you may not have to go through what some of us seem to go through every day.....so why not try it? What is it going to hurt to try and eat healthy or go for a walk or take a deep breath instead of punching your boss in the head....(although..somedays...that whole punching your boss in the head idea might be a good thing.... LOL!)

But please, do not be so hard on yourself if you don't get that reprieve...it can be a long and tiring journey, travelling through life with a tummy that controls you.... but sometimes, in some ways, maybe you can take back a little control yourself. You won't conquer it, so learn to live with it.... maybe you have to wear incontiance pads to go out in public....maybe you have to have an ostomy of somekind so your bowels quit leakin' to other parts of your body...maybe you have to take pills for the rest of your life (lots of people do that you know...people with blood pressure issues...people with thyroid issues... typeII diabetics... they just don't have to deal with sh*t all the time...lol) ... you might be happier in the end.....
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Last edited by Silvermoon; 07-19-2010 at 05:38 PM.
07-19-2010, 07:50 PM   #2
belle1999
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Well-said!!!
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Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder

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07-19-2010, 10:49 PM   #3
Entchen
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+1
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
07-19-2010, 11:18 PM   #4
Crohns08
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This post really spoke to me and I really enjoyed it! You always have such words of wisdom Silver!
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Toni, Diagnosed in September '08
Specific Carbohydrate diet
Currently on:
Yoga
Vitamin D
Gabapentin
SCD Multivitamin
Tums
Percocet
60 mg pred tapering weekly
Protonix
Levofloxin
Surgeries:
09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!


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08-14-2010, 04:20 AM   #5
DustyKat
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Bump.
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Mum of 2 kids with Crohn's.
08-14-2010, 04:29 AM   #6
Dexky
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Some things should be mandatory reading on here!!! Thanks for bumping this Dusty!! And thanks for posting this in the first place Silver!!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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08-14-2010, 04:35 AM   #7
Dallies
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Thank you for the bump. I hadn't read this! Silvermoon you are incredible!!
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Dallies xxxx Parent of a 21 year old daughter diagnosed with Crohn's Disease in June 2010

Meds: humira

Surgery:hemicolectomy June 2010
08-14-2010, 04:40 AM   #8
maxibear
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well said
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emergency stricturplasty surgury april 1, 2010- april fools on me, lol, dianosed mid april chrones, although i had no symptoms- currently on pentassa 8 blue ones a day, vit d, liquid fish oil, and a bunch of other great drugs for my i various problems.
08-14-2010, 06:21 AM   #9
Astra
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brill Silver

my gastro always says he's not concerned about the amount of D, it's inflammation he's looking for, eating well combats the D, but nothing with stop inflammation when it strikes, except Pred or other meds.

xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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08-15-2010, 07:50 AM   #10
duck68
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This is well written and I'm glad I've read it. I am frustrated because my D just isn't getting better. Even as I sit here now I have all those strange noises bubbling away in my guts!

My GI says the medication is going to take time - I just wish I knew how long. I'm now off the Pred and really don't see any change to when I was originally diagnosed in May. I am impatient with it all - but reading your story above makes me realise that I need to try and do more myself to help get this under control including trying to work out what it is that makes it worse for me...foods - seems to be everything right now!

Thanks for sharing...
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Diagnosed:
May 2010 Crohn's
(Symptoms for years, just hoped they'd go away!)
Medications:
* Prednisone 12.5mg
* Imuran 175mg
Supplements:
* Vitamin D
* Multivitamin
* Fish Oil
08-20-2010, 04:08 PM   #11
Silvermoon
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A kind man once said to me "Even if you didn't have CD, you would be still be a huge asset to this forum, just with your nursing abilites."

I've often wondered just how true that was; not just to this forum, but as a nurse in general.

I wonder, did I become a nurse because, as a person diagnosed with CD at such a young age, I felt like I could connect with my patients and have a better understanding of what they were going through? I've wanted to be a nurse for as long as I can remember... and I have had CD for as long as I can remember... so I am not sure which came first.

As I read through the forums, and find more and more stories of patients coming into contact with health care prfessionals (in general) who don't really seem to give two shits about us (no pun inteded, but there it is! lol), I wonder if I WOULD be this caring, compassionate and understanding if I didn't suffer with the damn disease myself. All I know for sure right now is that my heart aches for those I cannot help. I am a nurse, dammit!! I am supposed to be able to help people get/feel better!!

There are healthcare professionals out there who are just as compassionate, even though they don't have the disease ( Hi Dusty!)... people who actually care and cry and feel pain at the thought of a small child like Maddasin or amirah's young child trying to cope with this and not knowing what is going on with their poor little bodies. How can you explain to someone so young and so small why they hurt when we can't even explain it to ourselves? (It's funny how, if we were animals going through this much pain, some kind humane person would put us out of our misery so we would not suffer anymore; but because we are "human" we have decided that we will endure the pain and just "deal with it"....).

And there are our loving caregivers, the ones who suffer right along with us; rub our backs when we hurt, hold our hair back when we are hunched over the toilet puking our guts out, waking up in the middle of the night to help us change the sheets on our bed for whatever reason/mess we made this time, even though they have to get up at 5am to go to work the next day....

Some of us don't have these supports, and that is truly sad, because sometimes they are the only things in our lives that keep us going. We need someone to understand and advocate for us when we get home at the end of the day after an appointment from dumba$$ doctor number 396.....

A friend made a comment to me the other day about how bad they felt because they are always complaining to me about this little ache they have, or this cold symptom they feel, and here I am enduring holes draining god knows what out of god knows where, more surgeries than 3 people should have in their lifetime, and it never seems to end. They asked me "does it ever end with Crohn's?"

And then I cam across Regular Joe's post in the Vent Away section about the same issue... the fact that "it" never ends. You may have periods of remssion, but really, even when you are feeling great, you are always worrying about "the next time".

When I was young and diagnosed with a "bad belly" and had to take a few pills and watch what I eat, I used to think "Well it could be worse; I could have cancer."

Somedays I wish I had cancer..... then there would be an end.......

Last edited by Silvermoon; 08-20-2010 at 04:11 PM.
08-20-2010, 06:53 PM   #12
DustyKat
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Hey Silver,

Well I always wanted to be a nurse too and since I don't have Crohns maybe you are like me and just always had a desire to help others. Personally I think that's what it is with you too Silver, you are an incredibly compassionate lady and with or without Crohns I feel you would have chosen the same path and what a gift it is for others that you did.

Hope you are OK buddy.

Thinking about you,
Dusty
08-20-2010, 08:01 PM   #13
Dexky
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Silver, you're such a lovely person!! One of the best in my book!!! You know I have no idea how you feel physically or emotionally but please stay positive!! I need to know there is still hope in you!! You are one of my heroes!! I need to believe that EJ's future is full of possibilities!! I hope that isn't putting undue pressure on you but you are someone I look up to on here. Your words speak from the heart to the heart. We all need you
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