Sam's story

[Samantha Coral]

Hi everyone!

I've never spoken to anyone else with crohns so I thought this might be a good way to feel more understood.

My name's samantha and I'm from Ontario, Canada. I'm 20 years old and was diagnosed at 13. I started exhibiting symptoms at 11. Ater not being diagnosed in my hometown for over a year, I went to mcmaster hospital and was diagnosed within a few hours. At the time of my diagnosis I was 5'8, 80 pounds and unable to eat almost anything. I was put on prednisone and immuran and improved rapidly. Since then, I've been on and off medication, usually ending up in hospital a few months after ending treatment. I was on remicade for a few months, but stopped havin the infusions and ending up in hospital. Now I'm on humira, and have been on it for a year and a half. About two months ago I started getting very sick again, and I'm worried the humira has stopped working. I also hVe a lot of difficulty maintaining a healthy weight. I'm either overweight (when I feel good), or underweight ( when I feel awful for a long time).

If anyone had advice or words of wisdom, I'd love to hear from you

 

[KWalker]

Welcome from just down the road! It's very common for your weight to fluctuate like that. I have a scale at my house and weigh myself on a regular basis, and I almost ALWAYS weigh atleast 4-5lbs heavier at night then I do when I wake up. We tend to get bloated a lot.

 

[mikeyarmo]

Welcome to the forum Samantha!

I am sorry to hear that Humira does not seem to be as effective anymore as it used to. Do you feel fully better after the infusion at all or does it seem to have less effect overall now?

You might want to consider supplementing with Vitamin D as being in Ontario during the winter likely means you are not getting much Vitamin D from the sun. This is a fairly common deficiency for people with Crohn's Disease.

Other than that, you might want to consider making another appointment with the doctor responsible for your treatment as they might be able to try a different treatment option (including potentially changing how often you receive the Humira transfusion).

Do your best not to stress over the situation as this will not help your health at all. I know that is much easier said than done, but it is important that you do whatever you can to not overly burden your body.

Please keep us posted about your condition.

 

[Peanuttt]

Wishing you all the best!! Hope you can find a good med that keeps you feeling well & maintains remission! Please keep us updated and hang in there!!

 

[Gabismommy]

Welcome to the forum!! I hope things can get better. We are about the same age however I was just diagnosed in the beginning of this year.

 

[Angrybird]

Hello and :welcome: I would also say that you need to speak to your GI about your worsening symptoms, it could just be that the Humira needs to be given at a higher dose more often.... I assume the Imuran and Remicade was stopped because of reactions or lack of effectivity?

Weight wise I tend to keep a very close eye on portion size - I just find that sometimes it is not always what we eat but how much of it... I also follow a low fat/low fibre diet. I have found that this has helped me keep at a steady level of 66/67kg the last couple of months whilst I have been feeling a bit better and even being on the steroids which usually add the pounds on a daily basis. Obviously when unwell there is nothing that is going to stop the weight loss until the symptoms are under control.

I do hope you start to feel better soon hun, please keep us updated.

 

[Samantha Coral]

I have seen my GI and am waiting for an appointment for a colonoscopy. He wants the results before giving me any medication. I'm upset because we know I have crohns, we know what the results are going to be, and I'm slowly deteriorating while I wait for an appointment. Work and school are pretty much a write off at this point.

Angrybird, I agree about portion sizes, I will eat whatever's in front of me until there's none left if I'm healthy lol. I'm finding that lettuce and other veggies, dairy products and meat are problem foods for me right now, so I'm pretty much left with carbs right now (no complaints here). But I'm such a creature of habit it's always so hard to readjust to a balanced diet when I get healthy again.

Mikeyarmo, I don't feel better after the humors injections anymore, I think it's just not as effective overall anymore.

Thanks everyone for advice and support!