Newbie and lonely :(

[CMaxwell]

Hey guys! I'm Chessie, 20 from the UK (21 next Friday I'd just like to add ) and I've been diagnosed with Crohn's since I was 17 going on 18.

Compared to many people with Crohn's, I'm extremely lucky. After 2 years of constant GP's saying my diet was bad/it was all in my head/stress/I had IBS, I finally saw a private consultant who did all the camera treatments and diagnosed me with CD. I was given Prednisolone immediately and that helped wonderfully However, as soon as I arrived at University in September last year my Crohn's became awful again and I was having another relapse... really bad timing! I was basically on steroids for all the introductory parties so being sober wasn't exactly fun for me. I was also put on Pentasa but after horrible side effects my consultant told me I was allergic to this medication and taken off it straight away. But nevermind! Throughout the year my Crohns has seriously deteriorated the rest of my health leaving me with an enormous anxiety problem and severe depression. This led me to take an overdose on March 1st where I was in Intensive Care for a week. Not good :/ I also came to realise that my Crohns was reacting with my Anti-Depressants and so I made the decision to be weened off those. What a brilliant decision that was! My Crohn's was almost non-existent for several months! I was also diagnosed with a B12 deficiency which meant I had injections every 3 months until my new GP at university made me stop. There is now conflict between my home GP and Uni GP about whether I need to keep having these B12 injections or not. It's quite frustrating really If I do need them then I'm definitely due!

Anyway... it's June now and I've just been told I'm relapsing again so I've been put back on the steroids for 3 months. As I sneakily mentioned before it's my 21st birthday next Friday so I'm a little disappointed I can't have a celebratory drink I'm on my second week of 6 tablets a day and just praying for them to kick in soon! I'm so sick of feeling so disgusting and dirty and I'm definitely a different, happier person when my Crohns is under control.

I guess I'm simply introducing myself because at the moment I feel incredibly lonely. I'm constantly having to cancel plans because of my Crohns and not many of my friends really understand how much the disease affects my lifestyle. I've had to withdraw from Uni for the second time because of my health and I'm so eager to find work but I'm terrified how my Crohns will affect this. I'm so desperate to go out all the time to socialise but I just cant. I get uncomfortable or have to rely on Diarrhea tablets and its just no fun. So fingers crossed these steroids kick in soon hey?

Nice to meet you all by the way and sorry for the big rant :bigwave: :arghmatey_ani:

 

[EthanPSU]

Hey Chessie, first off thats a cool name. But it must of sucked being on steroids and not being able to do normal college things, I know I would of had way less fun if I was sober the whole time hah. I have drank while taking a steroid, prednisone, I know I shouldn't of but I don't think 1 drink would do that much harm.

Anyways these forums are a great place to talk to people in the same situation. I hope you do feel better soon. and Welcome!

 

[Trysha]

Hello C
Welcome to the forum.
When first diagnosed with crohns it is natural to feel upset and lonely.It is hard adapting to a different lifestyle at first but as time goes by you will adapt and learn to cope with whatever is thrown your way.But it is a hard thing to do.
The most important thing is to concentrate on getting into remission and staying there---
not always easy but it can be done.
Steroids usually have a fast reaction to quell the inflammation.
You should be having regular blood work to include vitamin B12 levels. Either you need adjusting or you don't and the lab results will be the defining factor. Your doctors need to be in agreement about this. If you are short of appropriate vitamin levels it can cause depression among other symptoms.
You really should be under the care of a Gastroenterologist and your GP should arrange
this referral for you.With proper care and monitoring you should be able to have some control and resume a social life.
Do not feel disgusted by your illness, it is something that happens to some of us and we have to take the lemons life throws at us and make lemonade.
It could be helpful to you to listen to good music such as Mozart, Beethoven etc which has been shown to have healing properties.
You could also try mindful meditation another useful technique for coping.
You are young with your whole life ahead of you.
Have you considered any effects occurring due to food items.
There is lots of information in the subforums,which include treatment and diet sections., and you may find this helpful.
Happy twenty first birthday next Friday.
Feel better soon
Hugs and best wishes
Trysha

 

[David]

Hi Chessie and welcome,

Out of curiosity, did your GP at the university test your vitamin b12 levels prior to taking you off of them? If so, what were they specifically? And what was your level the last time you were tested prior to that? Ensuring you have proper B12 levels is EXTREMELY important.

Have they discussed what medication they're going to put you on besides the prednisone?

Please do keep checking in with us. I get the feeling you're not getting the level of care you deserve. We can help educate you so you can advocate for yourself. Crohn's Disease needs to be properly treated and we're here to help support you every step of the way.

All my best to you.

 

[AshleyB85]

Chessie-
What steroid do they have you on? I am currently on Prednisone, and nowhere on the bottle or looking online does it say to avoid alcohol while taking it. If your doctor expressly stated not to drink on it, then I would follow their advice; but I don't think 1 celebratory 21st birthday drink will interfere too much even with that. But know that alcohol can irritate your GI tract, and make your Crohn's worse.

I know how difficult it is trying to have a social life with Crohns (I was 25 when I first got really sick). Especially trying to explain to new people the difficulties of it. Just do your best, and try to build up a great support system of friends and family members.

Welcome to the forum, I'm new here too! So far, it's been a great place to rant and help others. I was also going to ask what they were planning on putting you on after the steroids, and the b12 injections is a little weird. I would start asking what your levels are, and if you need to get tested again for anemia, and if you feel more tired or all-around fatigued, ask to start the injections again.

I would suggest starting a food/stress journal. Write down what you eat, and when you get stressed out. Also make notes when you feel worse, or feel your symptoms get worse. Write down why you feel stressed out, and see if that helps.

 

[AshleyB85]

Hey Chessie, just wanted to check in and see how your 21st went, and if you've gotten your B12 injections situated. Hope the steroids are working for you.

 

[mtngrl55]

Hi, it's scary the first while, and I remember the depression very well. I had my terminal ileum removed shortly after I was diagnosed and needed B12 shots monthly. Eventually I purchased the needles from my pharmacist and did it myself. Recently I found a sublingual B12 tablet, 1000mg...you put it under your tongue and let it melt, it will absorb into your blood stream. I used it for two months and went to my GP to have my blood tested, I had my highest reading ever. A shot once a month left me without B12 by the end of the month and I was having to do half doses mid month. Now I use the sublingual tablets every other day, my levels are always good and it's great for extended vacations.

 

[LivinglifewithCrohn's]

Chessie,
First let me wish you a happy birthday! I hope you were able to enjoy it. It sounds like things are not that great for you at the moment. But a saying I like to remeber is, "This too shall pass." And in time, at least for me there have been good, great times, mixed with the bad. I guess that is life and how it goes. I know it is hard though to stay positive when it seems all you are getting handed is bad times. Know that there will be brighter days ahead for you and plan for those days. I am determined to not let Crohn's get me down. I am determined to not let it define who I am. I have so much to live for and so do you! You have your whole future ahead of you and there will be joyous times for you. I know it. Believe that those times will come. You have to. Otherwise, you will live a miserable existence. Through the darkest of times comes the brightest of skies! It is true. I have personally experienced this.

Re: the University. I am not sure if on-line programs are offered where you are or not? They are very popular now in the US. I completed my graduate degree on-line through the University of Phoenix. I was very pleased with the experience I had. The instructors were top notch and I learned a lot. Until you can return to the traditional university setting maybe looking at an on-line option might be of benefit. It was nice talking to my classmates who were all over the world and even though we weren't in the same physical classroom we still developed friendships, just via cyberspace.

I get a B12 shot monthly due to Crohn's and my intestine's inability to absorb it naturally. My GI doc is very strict with me and if I miss a month boy do I hear about it. He told me that it is very important that I get the shot every month and do not miss as continued, long term effects of B12 deficiency may include mood changes, depression, and dementia. You should have had blood work to determine your need for monthly B12 injections. Please stay on top of your physcians. You must be your own advocate.

Please post and let us know how you are doing. You are in my thoughts and prayers.