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Crohn's Disease Forum » Your Story » Recently diagnosed...


05-01-2014, 05:52 AM   #1
dunbarno
 
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Recently diagnosed...

Hi there,

I found this forum after 'googling' Crohns to see if I can speak to anyone who is going through the same thing and I can see that there is a lot of us (unfortunately)!

To start off, I'm 20 y/o and have been suffering from constant diarrhoea and stomach pains since November 2013. I was diagnosed with Crohns last Friday after having endless blood tests, stool samples and in the end a colonoscopy. The colonoscopy brought back the results that they had found some ulcers in my terminal ileum and that I have Crohns disease.

I'm currently taking steroids (Entocort 3mg 3x every morning) I don't think they have kicked in just yet, but I was wondering if anyone else started off with these meds and if they helped at all? I understand that everyone is affected differently but I kind of feel a bit alone with all of this at moment hence why I joined this forum .

I read on the side effects for the steroids that they can cause mental health problems such as depression, I was also wondering if anyone had came across this when they had taken the meds? When I was a little younger then I am now, I had found myself in a dark place and I'm sort of scared that these meds may bring that out again in me?

I currently work in a call centre as a customer service advisor, luckily work has been absolutely fine with me when I have taken countless time of work (have lost over about 1000 in payslips) but I'm also worried that after a while they may not like the fact that I may have to take time off work from time to time when it flares up badly . I'm also worried about money, I live with my best friend, we split the rent and bills right down the middle and I know he would help me out if money is tight but I just feel so stressed out about it all which doesn't help the Crohns at all.

I was just wondering if anyone would be able to share any insight to this at all?

Thank you for reading my essay hehe!
05-01-2014, 06:31 AM   #2
Orchid
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Entocort has much less potential for the sheer scale of side effects witnessed on it's big brother Prednisone because very little enters the bloodstream and what does is easily broken down. I had full blown steroid psychosis on prednisone, and I can tell you it's bad. But luckily it goes away quickly after the medication is discontinued, and as mentioned, Entocort is much less vicious about steroid psychosis and I've not seen any mental side effects on it myself. Entocort is very effective at quickly inducing remission, but you can't really stay on it long term.

Did your GI discuss long term medications with you? You need to be on some form of medication to make sure your remission lasts longer and your flares are less intense. They'll help you keep feeling better quite a bit. Once you go into remission, you can basically forget you have CD until symptoms show up again. You have to regularly check up your GI for blood testing/fecal testing though because inflammation can be extremely subtle and you don't feel pain from gastric inflammation until you're suffering complications.

Things get better, trust me.
05-01-2014, 06:51 AM   #3
dunbarno
 
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That is very helpful and insightful, thank you for your reply :-).

I haven't really had a chance to speak with my doctor, I received my results via letter along with a big information pack. I have an appointment next Wednesday with the doctor who referred me to have the colonoscopy done so I'd assume they will go into more details next week with all of that.

Thank you again
05-01-2014, 06:57 AM   #4
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Glad you're here! I'm 20 too. You're not alone!
05-01-2014, 09:56 PM   #5
Alley2231
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Welcome!

I am new to the forum and recently diagnosed (in January) as well! When I first was put on meds I started off with Entocort & Pentesa ... they both seemed to work for a little bit, until they didn't anymore! I didn't notice any side effects with Entocort. Now, however, due to a horrible first flare that landed me in the hospital twice over the last month and a half, I'm on Prednisone...this is the steroid that you will have side effects with, if you ever need to go on it! I have had every side effect that everyone talks about, minus the mental health issues/hearing voices in my head.

I also saw that you responded in another post about how you haven't really had a chance to talk to your doctor yet. I would highly recommend going into that appointment with a list of questions and concerns. When I was first diagnosed in January, I was still in a bit of denial/shock about my diagnosis, that the first few appointments I had with my GI doctor, were literally maybe 5 minutes long, because I didn't know what questions to ask or I couldn't think of any until after my appointment. Since my first hospitalization in February, I now keep a notebook near me at all times, so that if a question pops in my head, I jot it down so I can ask it at my next appointment.

I haven't worked since February 13th of this year. I am out of work on the Family Medical Leave Act - so I am able to keep my job and health insurance for 3 months. I am hoping to be better enough to go back to work in a few weeks, because that 3 months will be up soon. In regards to money while out of work....if you don't have it already I highly recommend getting a short term disability policy with a hospitalization plan. You never know when this disease could land you in the hospital...maybe you never will be hospitalized for it, but it still doesn't hurt to be prepared with the insurance. While I have a very, very small short term disability plan, I very much regret not getting additional insurance. Now, since I've been hospitalized twice because of this medical condition I am not allowed to sign up for an additional short term disability policy or hospitalization because I am considered too much of a risk. Depending on the type of insurance and the insurance carrier I would need to wait 6 months to a year without any major issues with my Crohn's before being able to get the additional insurance. I have been lucky enough that my family has been helping me out with some of my bills.

I hope my rambling helped! I'm still new to it as well, but just wanted to share what I have learned so far from my experiences!
05-02-2014, 03:27 AM   #6
dunbarno
 
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Thank you all for your responses .

I know it's not a nice thing to have but it's quite comforting to hear from others who are going through the same thing.

Thank you Alley2231 for your reply aswell, it's good to hear that there isn't too much to worry about with the Entocort . Yeah I was planning on jotting some questions down otherwise I will just forget to ask by the time it comes around to the appointment . I'm based in the UK and as far as I'm aware I'm not eligible for any benefits but I'm pretty sure my bank as a insurance scheme which covers loss of pay due to an illness so I will have to have a little look into that later .

Thank you again, big hugs to all .
05-02-2014, 10:43 AM   #7
Alley2231
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It may even help to bring someone to the appointment with you too. My mom has been joining me, especially since my hospitalizations. It helps to have a second set of ears there, in case you miss something or to help you understand it a little more. Also, they may think of a question or 2 you didn't even think of. Plus, it's just good for the support as well!

I didn't realize you were based in the UK. It may help to check in with human resources to see if you do have certain benefits available to you. Or even checking out what laws you have as well when it comes to a disability. Crohn's disease is considered a disability in the US, so I do have certain rights if my employer is not able to accommodate me when it comes to certain things (such as not allowing bathroom breaks when I need to go, etc).
05-02-2014, 03:59 PM   #8
Ali29
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Like Alley2231 - I also keep a pad of paper near me for questions and I also jot down bad days and what happened and what I had eaten recently. This forum has been such a relief for me. Reading all the posts, etc. also help me to know what to ask the GI the next appointment, there is just so much information on this site and I love the WIKI on here.

For me, I had to graduate to Prednisone from Entocort - so far I'm not having any side effects but I've only been on it for a week. Sometimes just a little harder to get to sleep.

Good luck on with your appointment!!
__________________
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
05-02-2014, 04:15 PM   #9
Alley2231
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Like Alley2231 - I also keep a pad of paper near me for questions and I also jot down bad days and what happened and what I had eaten recently. This forum has been such a relief for me. Reading all the posts, etc. also help me to know what to ask the GI the next appointment, there is just so much information on this site and I love the WIKI on here.

For me, I had to graduate to Prednisone from Entocort - so far I'm not having any side effects but I've only been on it for a week. Sometimes just a little harder to get to sleep.

Good luck on with your appointment!!
Ali29, you may want to check out the support group for those of us on Prednisone - The Miserable Prednisonites Club. I didn't start having side effects outside of insomnia and shakey hands until I was on it for a little over a month. I was on a high dose for a while (60mg) and I'm finding now with me weaning off of it (I'm down to 20mg) I'm having more issues with moon face, bloating and weight gain, than when I was on the higher dose. I hope I'm not scaring you, but I just wish I was aware of the side effects before going on it!
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