Finally dealing with my disease

[seaofdreams]

Hi, I'm Nicci, I'm 20 years old and I live in Brisbane, Australia.

For at least the last 3 years, I have been suffering with intense abdominal pain, bloating, bloody and mucousy diarrhea, high temperatures and occasional vomitting. Instantly you will recognise the symptoms but unfortunately for three years, the 5 different doctors I visited failed to do the same. Quite often I was told that I had irritable bowel or lactose intolerance and it was never followed up, so I continued to live with my symptoms, assuming that what I was feeling must just be normal and I have to live with them. I can't even remember how it feels to go a whole symptomless day. After a year of constantly feeling ill, I became very withdrawn and depressed. I'm terrified to leave my house in fear of needing to use the bathroom, and get panic attacks if I try. Lucky I'm employed by my family-run business so I'm still able to hold down a job.

After my abdominal pains got increasingly more severe, my doctor decided to send me for a CT scan on the off chance that it might have been kidney related. Even before I underwent the scan, the radiologist asked me about my symptoms and predicted IBD. And he was right, after a colonoscopy I was finally given my long overdue diagnosis three weeks ago, I have Crohn's disease. I started on Mesalamine despite being highly recommended to start on Prednisone but I'm wary of the many side effects. My Crohn's is considered to be "moderate" and after three weeks, I don't seem to yet be seeing any positive results from the Mesalamine.

It's nice to put a name to a face so to speak but it still hasn't quite sunk in yet. Other than the medication, I haven't made any changes to my diet, despite being a horrible fatty and sugary food addict. I think my logic is, if I don't think about it, it's not real. Even when I talk about it, I feel like I'm about something that has absolutely nothing to do with me.

I think my biggest problem is that I'm finding it really hard to get any support because I'm too embarassed to talk about my symptoms with my boyfriend and friends and my family have been hearing me complain about being sick for so long that they don't really care to hear about it anymore.

I'm hoping that by joining this forum and hearing about different experiences and talking about what I'm going through that it will finally sink in and I'll be able to help myself control my disease and learn what I need to know to do so.

 

[bphenn]

Nicci, welcome to one of the best support groups online! I too was like you at first and felt very uncomfortable talking to other people about what I was going through. Once enough was enough I finally talked to some of my friends what I was going through. Let me tell you, your best friends will stick with you through anything and be there for you. I had to leave the ship I was stationed on but whenever they got into a port where they could call me, i would receive so many calls to inform me that no one has touched my stuff and I was missed .

About the Mesalamine, I was on that too but I guess that is primarily for the large intestine so the doc deemed it useless for me (mine is in my ileum region). Prednisone did help me but it would make all my joints ache and a bit grumpy but I wasn't in pain! Just don't be afraid to talk to anyone, it can be the biggest relief. I must also add I have visited Brisbane and some other places in Australia and it was absolutely beautiful. If I could I would live there.

 

[seaofdreams]

Thanks for the welcomes. My inflammation is mostly in my ilium region too, my doctor gave the Mesalamine a 30% chance of success so it was almost certain that I would need to start on something else, I'm off to see him in a week so the steriods will probably be the next stage =/ Thanks Shantal, that makes sense, I guess an issue too is that I'm told of all the problems but I never hear the success stories in relation to Prednisone.

 

[bphenn]

Here is another success for Prednisone. When I was on it I could actually sleep without pain. That was probably the best sleep ever! I never had weight gain or moon face but quite the opposite, I lost weight. Prednisone can be scary looking at all the side effects, but remember that saying on the bottle that your doctor believes the benefits are better than the side effects. I hope it works for you and you can be pain free!

 

[JillianB82]

Hi Nicci! Welcome to the forum!

I know what you mean about the "support" issue, as do many of us here. Sometimes it is hard to explain CD to others, so it's kind of like if you do not have it, you really can not understand it.

I was on Entocort for 4 months. My GI took me off of it a few months back. Although the D has returned, it is not NEARLY as bad as it was this time last year.

I hope you're feeling better soon!!!

 

[My Butt Hurts]

I agree with Shantel and Bphenn on the pred success stories. Pred has treated me VERY well every time I have needed it. Many people on here have a love/hate relationship with pred, but I just love it.
Though you are a sugar/fatty food addict, you might want to REALLY try to cut down. Sugar can add to your inflammation and a LOT of people are bothered by fatty foods on here. A diet change might not make you feel 100% better, but it sure might help a bit.
Welcome to the forum - feel free to talk about ANYthing that you can't talk about at home. Nothing is too much for us, and we are all here to listen.

 

[seaofdreams]

Thanks for the positive stories and welcomes. I'm most concerned about weight gain as I've had weight issues for much of my life and one of the Cohn's symptoms I haven't experienced is weight loss but I guess there are ways to prevent it.
I am aiming towards cutting down most, if not all sugary and fatty foods but I'm being realistic and taking it slowly.

 

[shazamataz]

Hi Seaofdreams and welcome

As the others said, don;t be afraid of the Prednisone. I have been on it for about 6 weeks now, and tapering over 3 months and the side effects are not that bad.

I was pretty manic for the first 2-3 weeks, but, as someone else said, it was kinda great as I got heaps done and came out of hospital feeling really posotive, even after being given such a nasty diagnosis.

As for weight, so far it hasn;t affected me. I have only managed to put on about 2kg in just over 5 weeks. I did have a full on appetite for the first couple of weeks, but that seemed to subside. I reckin part of that may have simply been because I had hardly been able to eat for a good month or so and being able to was exciting!

I get the hwole support thing too. While my 'people' have been amazing, it's kind of like now that I am out of hospital and back to work that I am 'better'. While yes I am feeling better, I am not sure if they really understand the nature of this and how it is a lifelong thing - I am still getting my head around it myself to be honest.

Finally, slow changes in diet are good, but definately get rid of as much sugar and fried stuff as you can.

Good luck with everything

Shaz :Flower:

 

[forum contributor]

Hiya, Nicci!

First off, welcome to CF! This is a great place for info and support. I've only been here for 6 months, but it feel like years. Everyone is great. I honestly don't know what state I would be in if I didn't find this forum.

Second, I love your hair!!

As for the Mesalamine, are you on Lialda or Canasa? I'm on both. I'm not sure what it is called in Australia. Do you take it orally or by suppository? I'm lucky to take it both ways!
(Booooooooo......)

Anyhoo, welcome, and be sure to post often! We like to have fun around here...

 

[seaofdreams]

As a side note - PLEASE please please - make sure you take Calcium and Vit D supplements ALWAYS when you are on prednisone (or any steroid). And the super best thing you can do is weight bearing exercise (walking, running - treadmill). These are both a must to keep your bones in good shape. I ended up with osteopenia (you get that right before osteoporosis) from so many years of using it - and being lazy and not working out like I should. This doesn't happen with one taper - it happens with many. I have rebuilt my bone density where it is roughly back to normal - but hey - it is nice to be able to learn from someone else's mistakes yes?

One thing I am good with is supplements and such, my boyfriends mum is a nutrition specialist and loads me up on everything I need. And the excercise should be easy, I work in a gym as a beauty therapist ^_^

 

[seaofdreams]

Hiya, Nicci!

First off, welcome to CF! This is a great place for info and support. I've only been here for 6 months, but it feel like years. Everyone is great. I honestly don't know what state I would be in if I didn't find this forum.

Second, I love your hair!!

As for the Mesalamine, are you on Lialda or Canasa? I'm on both. I'm not sure what it is called in Australia. Do you take it orally or by suppository? I'm lucky to take it both ways!
(Booooooooo......)

Anyhoo, welcome, and be sure to post often! We like to have fun around here...

Thanks for your welcome and compliment. Up until a few weeks ago I was a platinum blonde, I'm still getting used to it.

Umm.. I believe my medication is called Salofalk, and it's the oral form.