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Crohn's Disease Forum » Your Story » How bad do things get? (just diagnosed)


05-01-2014, 03:09 PM   #1
Kateee
 
Join Date: May 2014
Location: Yorl, United Kingdom
How bad do things get? (just diagnosed)

Hi,

I've only just been diagnosed with Crohns a few weeks back, straight onto steriods and pentasa which have worked really well and really quickly. Even before diagnosis it was blood in stool and a degree of fatigue but nothing intolerable, no pain really and I still worked full time.

Before the diagnosis I was on my way to setting up my own business now everything is on hold while I am waiting until I come off the steroids (in 2 weeks) to see how bad I get in the coming months.

As my symptoms have been easily treated and not severe so far does this mean I might not get too sick in future? or is that not how it tends to work? I heard the first flare is often the worst? I'm hoping a few diet changes and the Pentasa will be enough as my symptoms do not sound as severe as other people I have read about but not sure if I am being naive? Are things likely to get a lot worse?

Its just the uncertainty and not sure whether putting my life, and ambition of having my own business on hold for the moment is a good idea or not.

Any advice would be appreciated.
05-01-2014, 03:13 PM   #2
theOcean
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It really depends on your illness and the level of treatment you need for it. As long as your flare recedes and you're medicated properly, you should be fine. 5-ASAs like Pentasa are generally what people are put on first, and if that isn't enough immunosuppressants or biologics are added. But if Pentasa is working well for you, you should hopefully be fine, since that's actually one of the much milder medications for Crohn's.

Just keep an eye on things, and the second you notice anything is off be careful to get looked after right away. Hypervigilance is key in keeping yourself healthy with this!

Once you settle back into remission you should be fine to resume things as you did before. I'm in remission and feel totally normal. The only thing that isn't is the medication, but I'd much rather have that than be sick.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-01-2014, 03:15 PM   #3
Brenden
 
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Hi welcome to the forum, this is a great place to learn about Crohns and IBD.
Everyones case of Crohns is different, depends on location of disease and severity etc. From what it sounds like you have a pretty mild case. Do you have any information from other previous testing?
05-01-2014, 03:23 PM   #4
Kateee
 
Join Date: May 2014
Location: Yorl, United Kingdom
Hi, my initial colonoscopy said about 20cm of inflammation in my colon and some patchy secions in terminal ileum i think (?no idea what that means) going for tests to rule out spread into the rest of my intestines.

I pleased an apprehensive at how quickly the steriods worked, but as I am gradually coming off them in a reducing dose am noticing my stomach growling quite a bit.

fingers crossed though it can be kept at bay.
05-01-2014, 03:33 PM   #5
theOcean
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Terminal ileum is a part of the small intestine, which has to do with absorbing bile salts. A number of nutrients and medications are absorbed through there, but if you're in flare that may be compromised.

Glad to hear the medication is helping! And as long as you keep on top of things I'm sure you'll be fine.
05-01-2014, 10:54 PM   #6
Olive.
 
Join Date: Oct 2013
Location: Detroit, Michigan

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Congratulations on your new business! I will say that worrying and stress only makes this type of disease worse, so my advice would be to worry about today's symptoms today! If you are feeling better, then that is great! No one will be able to say for sure when/if you are going to flare, so if you and your doctor decide you are happy with your situation, I would suggest moving forward normally!

The second something goes wrong though, call call call your doctor. Even if you're not sure it is related to the Crohn's. It is always better to call than wonder!
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Olivia

Currently on budesonide and immuran
NEVER taking prednisone again
Interested in holistic therapies

I blog about immune diseases here! :http://mytreeandleaf.wordpress.com/
05-01-2014, 11:27 PM   #7
Alley2231
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It really is different for everyone. My father has Crohn's Disease, but he has a very mild case. He takes medication everyday for it and his last flare was several years ago. I, on the other hand, am considered a moderaltely severe case. I have been hospitalized twice over the last 2 months (due to a very bad first flare up, but I don't know if everyone's first flare is bad), have been on TPN, my body does not like the "normal" Crohn's meds - Pentasa actually being one of them (liver numbers were very escalated) and I'm on Remicade.

I would think if you're on medication that seems to work and you're getting weaned off of the steroids already, you may have a mild case? I'm not at all an expert and I'm still new to this disease too. I found out very quickly though that the medications I was put on - weren't working. I was diagnosed, put on meds, a week and a half later my symptoms got worse and then another week after that I was hospitalized. The fact that you're not in the hospital right now is a good thing!

I have noticed though that stress is a trigger for me. Don't think or worry about the future (unless it's to get additional short term disability insurance with hospitalization included - a BIG thing I've learned from this experience). So don't stress about it and take everything one day at a time!
05-02-2014, 01:49 AM   #8
sasz11
 
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Stress always can trigger me. I was diagnosed nearly a year ago. It was a big thing for me and they called me severe. I was in hospital for three months when I first got diagnosed. Due to so much pain and fatigue. Unfortunly this lead to a blockage which lead to a perforated bowel. I am lucky to have such a good team to help me out. Take a break from work and setting your business up because you don't want to make it worse. Your health is more important. Once your stablized and feeling good. Start work again. Good luck
05-04-2014, 04:07 PM   #9
Daisy123
Senior Member
Stress is a trigger with me as well. I had my first flare during my finals at University. I have had a tough time with it, but still managed a MA and PhD and full time work. Some people have very few flares. The medication is is much better than when I was first diagnosed. I take Pentsa and Aziathropine and have no side effects. Remicade is next for me. My advice is take care of your emotional and physical health, enjoy life and don't worry about the future.
05-04-2014, 07:04 PM   #10
Ladyslipper
 
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I was just diagnosed with crohns about 2 months ago. Mine was only in the small intestine and terminal ileum as well. I as well responded well to prednisone and am now on the end of my taper. I was also just put on imuran and fortunately things are staying ok. My diet is still very restricted but so far no more pain. I can relate to the worry about the future and what will come my way but I am just trying to focus on each day as it comes. I was off work for 6 weeks but started back to 1/2 days last week and again this week. My energy had been so low from the weight loss - about 25lbs, as well as feeling crazy from prednisone, but things are starting to improve. I as well am worried how things will be once the prednisone is done (on 5mg now), but again trying not to worry as I know stress is a trigger. It can be pretty overwhelming how much one's life can change so quickly. Things are so much better now than 1 month ago and feeling stronger and able to cope better. Here's to hoping things continue on the same positive note.
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