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Me and Crohn's

Hi there,

I googled searched Crohn's disease and this website came up. I thought it might be a good idea to just share how I am feeling and dealing with the disease.

My name is Moeed and I have been living with crohn's since the age of 12, however, I was only diagnosed with it in February 2011, when I was 19.

It began with lacerations in my mouth as well as small cuts down below. The seriousness of this varied and due to my age and not really knowing what was going on, I didn't really have any idea how to deal with it. I was given many different treatments and drugs and they seemed to work as everything would clear up for a year or so. It would come and go until the age of 17, when I thought it had all ended.

However, in September 2010, my abdominal area began to feel odd and I noticed that I was visiting the bathroom a lot more than usual. The next few months I spent most of my time on the toilet going between 15-20 times a day. The pain was unbearable. Stomach cramps, bleeding…the works. I slowly became weaker and weaker loosing 11kg between December 2010 and January 2011. I went from being 68kg (a weight I worked hard to get to lol) to 57kg.

I looked like a zombie, the walking dead…I didn’t really realise how bad it was until one of my ‘friends’ said I looked ‘disgusting! ’

Real eye opener, that was.

I slowly became isolated in my own little bubble. My friends became a distant memory and I was very anti-social. This coupled with the steroid I was on at the time, Prednisolone, meant I was very snappy and subject to huge mood swings. I was pretty much turning into golem from lord of the rings. My girlfriend was so worried about the state I was in. I felt so sorry for her…but there was nothing I could do. I managed to put all the weight I lost back on but after I weaned off the steroids I slowly lost all the weight again. After many, MANY, tests I was finally diagnosed with Crohn’s disease and orafacial granulamatosis.

When I was informed it was both a relief as in I knew what I had but a very weird feeling at the same time.

I had a disease…

I was/am a very positive guy so I instantly began to think and ask about ways to get rid/cure it. When I was told I would have it for the rest of my life and that I would only be able to control it, that was a massive reality check.

Since then I have begun infliximab infusions, but I feel no different. Physically I feel ok (still going to the bathroom regularly) but mentally I am a very lost boy. I don’t know what it is, its come to the point where I literally wake up and do nothing all day. No purpose what so ever. I am retaking my second year at university and I cannot afford to mess up again.
Its so hard though, I have work to do, I know I should do it, but I just cant and don’t. I have no motivation what so ever, I feel most comfortable when alone. My diet is appalling. I started taking the modulen shakes but I haven’t noticed anything yet.

I hate the way I am now, I was so outgoing and confident but now that has changed. I am a totally different person compared to the guy my girlfriend liked at first. I thank god I have had her support and she has been an inspiration to me. I would have given up ages ago if it wasn’t for her constantly being there when I needed her.

Shes a rock, a hardcore one...diamond.

I don’t think my parents realise the severity of my illness and I don’t really speak to them much about it. I don’t speak to many people about it at all in fact. I don’t know if this sounds weird or not, but I don’t want to seem weak or vulnerable.

I still have hope that I can get out of this and rebuild but university is intense and I need to progress to the next year. The way things are going at the moment that won’t happen.

As I mentioned, I just hope I can get out of this negative mindset I m in at the moment and get healthy again.

I don’t ask for your pity or to feel sorry for me, but I just needed to get this off my mind. Its alright talking to people but if they haven’t been through the same thing then they will never fully understand.

As I am sure most of you have been through the same thing, I felt I could express myself with people having a better understanding.

I apologise in advance if there are any grammatical inaccuracies, spelling mistakes or bad punctuation. I have not drafted this or even proof read it. I just wrote what I was thinking.

Thanks a lot

Moeed
 
Hi Moeed

Welcome to the forum! Like many of us, it sounds like you've had a roller coaster ride with this disease. Yep, finding out that you have to figure out how to live with this disease is quite something to get used to. The social isolation you mention can be really hard, and I understand that one quite well. I got tired of always having to map out bathroom locations, or check restaurant menus online before agreeing to go out with friends. It just seemed easier to stay at home...

It sounds like Remicade (Infliximab) isn't doing much for you---has your GI suggested other medications like Humira? Have you tried Vitamin D...it can sometimes help with one's mood.

I'm glad you've got a strong, supportive girlfriend...having someone like her can help ease some of the pain, frustration, loneliness of living with a chronic illness.

There's some great information in the Treatment section of this forum...looking forward to seeing you around.

Take good care,

Kismet
 

xJillx

Your Story Forum Monitor
Hi Moeed and welcome. I think the emotional toll this disease takes on us is just as bad as the physical one. Like you, I find myself not as outgoing as I once was. Sometimes it really bothers me the way I have changed, but I try to stay positive and think of all the stuff I can still do. Granted, I know it is easier said than done, to "think positive" that is. When you are feeling lousy, it's a tough think to achieve.

It does seem like you are struggling quite a bit emotionally, especially since you feel you have no motivation to do much of anything. Have you considered speaking to your doctor about this? I am not a pill pusher, but perhaps you need something to help get out of this rut. When I was in college, I suffered from a great deal of anxiety. I was a major over-achiever; a 3.8 GPA wasn't good enough. I was at a point where I thought I'd have to drop out, because I couldn't take the pressure. So, I started to take Paxil, and it helped me a great deal. I was able to put things in perspective and not get so worked up over every little thing.

Anyways, I am glad you found us. It does help to talk to others about how you are feeling, and where else is better than a place where we are all in the same boat?! Hopefully, we can help you to feel a little. But if you feel you need more, don't hesitate to reach out to your doctor.
 

David

Co-Founder
Location
Naples, Florida
Hi Moeed and welcome! I agree with glum chump above who mentioned vitamin D. I'd also suggest having your vitamin B12 levels checked. Crohnies are often deficient in the two and both can cause some of what you describe.

I wish you all the best and hope you become a regular part of our community :)
 
Thanks

Hi guys, i appreciate your feedback!

seeing people actually reply to what i wrote made my day! :D

i'll look into the vitamins and take all your advice on board.

thanks again

Moeed
 
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