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Crohn's Disease Forum » Your Story » Newly Diagnosed - tips, guidance greatly appreciated.


07-07-2015, 02:09 PM   #1
RRRIOT79
 
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Newly Diagnosed - tips, guidance greatly appreciated.

Hi all,

I've been newly diagnosed as of June 29th and been thinking about it and crying some days....so many emotions - figured out I reach out to you guys for some help

I've been having abnormal BMs since 2013 but until late last year, early this year, I've been experiencing the same thing along but with more abdominal discomfort (cramping, gas, etc.) - nothing too painful, just uncomfortable. So I finally went out to see a gastro and had the following done:

1. Feb 2015 - colonoscopy - minor narrowing in the transvere colon
2. Promethus Bloodwork - inconclusive
3. Stool sample - all good
4. MRI Enterography in June 2015

Saw my gastro last week and she told me I had aggressive UC with a real narrow colon stricture (she scared the HELL out of me!) and offered me three treatment options:

1. Humira or Remicade for 6 months (if no improvement, surgery)
2. MP6 or Imuran for 6 months (if no improvement, surgery)
3. Surgery

She gave me two weeks to think about it and research it...To be honest, I'm scared - I was not expecting this at all so I went to another gastro and surgeon. The surgeon calls me, and tells me its Crohns and I have fibrostenetic tissue, which eventually would need surgery. She said I can go ahead with the treatments, see how it goes. I see my gastro this Thursday.

I definitely want to avoid surgery until its definitely necessary. Does anybody have any thoughts on the type of treatment I should do - I was thinking Remicade but read that it won't alleviate the stenotic portion of my descending colon. Anybody in the same boat as me?
07-07-2015, 02:26 PM   #2
DJW
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Hi and welcome.
Sorry you're in this position.
It takes time to accept this disease. Be kind to yourself.
Remember, it's not the end of the world.

I'm currently on Remicade and imuran; I'm now doing well.
It's unfortunately true, meds don't work to reduce or eliminate scare tissue.
Some people here have had success with baloon dialation. I'd suggest discussing that to see if you're a candidate.

It is very important to properly treat the disease.

Sending you my support.
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07-08-2015, 01:27 AM   #3
Caitlin84
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I would actually look for a third opinion if I were you. UC and Crohn's are not the same, so you technically have two very different diagnoses right now. Somebody else just posted this link, it might help: http://www.inflamed-and-untamed.com/...and-ulcerative

Sorry to hear about a diagnosis of either. It's hard, but doesn't have to be the end of your world. I suggest therapy though. A chronic condition is a lot to take in and so are all the choices you will be faced with. I hope you find some good support here.
07-08-2015, 07:04 AM   #4
RRRIOT79
 
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Thanks for the responses....a third opinion? Well my initial gastro said my small intestine was fine and the stricture is in my descending colon and it was UC. The surgeon then called me - she saw all of my pathologies and images - came to the conclusion of crohn's. So then I did see another gastro, and still waiting for his call. He told me that he was going to call my initial gastro and talk it out.

I have an appointment with my first gastro this Thursday - going to ask her more questions - and then going to drop by the other doctor's office that was suppose to call me - they are in the same building. Do you think that the doctor I'm waiting to hear from would be my 3rd opinion? Or should I see another one?

As far as the first gastro - I'm a bit weary of her diagnosis....nothing against her but she did finish her fellowship in 2013 (fairly recent) and the other two I sought help from well, they've been in practice for a while now.

It's a lot to take in, no doubt. I'm taking it day by day and trying to not bring me down but sometimes it's tough. And then I just say to myself, it could be worse. I'm glad I joined the forum though - there's so much good stuff/information here. Thanks!
07-09-2015, 12:24 AM   #5
Caitlin84
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I don't think the third opinion is as important as just getting some agreement on Crohn's or UC.

Glad you are finding support here.
07-09-2015, 02:42 AM   #6
Bunty
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I was diagnosed with UC last year, it has been changed to crohns just last week.
I'm in the middle of my first flare up since it finally settled down last autumn, the change of diagnosis has also meant a change in meds to azathioprine, and I'm currently on steroids for eight weeks.
I found last year, and again this year with this flare up, that I have been surprised at just how low and weepy I've been. This is, I believe, due to all the factors surrounding UC/crohns...the disease itself having an effect on your whole system, the steroids with their side effects, the aza and all that brings with it, and simply getting your head around what is, certainly initially, a complete life changer.
I give in to tears when I need to, a do small things which make me happy, I don't even try to work through the fatigue anymore but just sit and read or fall asleep. You're right, things could be worse, but when you're feeling totally rubbish that's no help and you need to allow yourself to feel rubbish without feeling guilty.
I do so hope you get some answers.
Bunty x
07-10-2015, 11:25 AM   #7
RRRIOT79
 
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Hi all,

I met with my gastro yesterday and didn't paint such a bleak picture for me so I'm feeling a bit better now. I feel better, I'm not feeling so bloated and my BMs are somewhat normal. I think now its just focusing on what foods make me feel good and not so bleh.

I will hopefully be starting Humira soon (they waiting for my bloodwork to come in) and hoping that will help me out. Still training for the MCM - just hope my knees don't give me too much trouble

Thanks for your respsonses all - it's been very helpful
07-10-2015, 12:43 PM   #8
Bunty
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What's MCM, sounds interesting.
Glad you feel more positive than last time you posted 😀
The food thing can be trial and error, I've found. I've decided to just try and eat healthily and normally and see where that gets me.
Not easy is it?
Bounty x
07-11-2015, 12:08 AM   #9
Caitlin84
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Glad you feel better after your visit. =)
07-11-2015, 01:41 AM   #10
Ann Morgan
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Hi all,

I met with my gastro yesterday and didn't paint such a bleak picture for me so I'm feeling a bit better now. I feel better, I'm not feeling so bloated and my BMs are somewhat normal. I think now its just focusing on what foods make me feel good and not so bleh.

I will hopefully be starting Humira soon (they waiting for my bloodwork to come in) and hoping that will help me out. Still training for the MCM - just hope my knees don't give me too much trouble

Thanks for your respsonses all - it's been very helpful
I have Ulcerative Colitis and was diagnosed in 2006 but have had symptoms since 1997. I had a really good Gastroenterologist from the beginning. While I was his patient I had two colonoscopies, I took Asacol and then Lialda, and I was taking the Questran Powder. I have had two rectal abscess surgeries and one anal fistulectomy. I had C-diff treatment in April of this year. Right now I am doing OK.

I am assuming that MCM is a Marathon ?

There are so many questions people have about Inflammatory Bowel Diseases. You will learn a lot here.
07-13-2015, 08:07 AM   #11
RRRIOT79
 
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Hi all,

Excuse the delay. So I overindulged this weekend :/ so feeling totally bloated. This whole eating bit is definitely going to be a struggle for me. Do you guys usually eat smaller, frequent meals during the day. It's just that I'm so hungry most days and eat so much :/ Usually after I eat, I just hear my stomach making all these gurgly noises and then it settles after a bit. Since the inflammation is primarily around the descending colon, I am able to digest food and dont have many bouts with diarrhea? Do most of you find that with Crohn's?

And oh yes, MCM is the Marine Corps Marathon here in DC. It'll be in October and I'm hoping to run it. It's my second and last one, for sure

Hope you all had a great weekend. Thanks!
07-13-2015, 08:14 AM   #12
teeny5
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Smaller meals are easier for me. I am glad to hear you feel better.
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-15-2015, 09:28 AM   #13
Janice G
 
Join Date: Jul 2015
Location: Brockville, Ontario

Glad to hear you suggest foods that cure.
Over the past 30 years I've experimented with many foods for Crohn's. When having a flare-up, use the KISS principle...Keep it Simply Simple!
Avoid meat and particularly chicken (chickens are fed antibiotics and grains - you eat what they've eaten!) You can gradually reintroduce animal protein when things have calmed down.
Avoid dairy, soft drinks, coffee, tea, fruit juices and acidic fruits , sugar, acidic condiments eg ketchup, mustard, etc.
Use cooked rice, rice cereals, rice beverage (milk substitute), lentils, mashed potatoes, avocados (just to name a few). Nothing with sulphur, eg onions, garlic, broccoli, brussel sprouts, etc.


SUPPLEMENTS
Use ALOE VERA JUICE (1 tablespoon am and pm before bed; gradually increase to 2 tbsp. - too much will cause diahhrea can't remember how to spell this!)
Use aloe vera juice or gel for anal fistures/fistulas. You can even make a small suppository by using a small testube filled with aloe and freeze.
ACIDOPHILUS = probiotics. Introduces healthy bacteria into the gut. Unhealthy bacteria, caused from eg. too much wheat, yeast, meds, cause pain, cramping, etc.

Speak to your GI or GP about this or consult with a naturopath. Good to hear what everyone has to say about this subject.

Research everything that goes into your mouth!:cool
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