My story

[Gustaff]

Hi guys and girls. My name is Gustavo. I'm a brazilian graduate math student. In advance, I am sorry for any mistakes with my english.

I started with Crohn's symptoms at the age of 15; I'm now 25 but my diagnosis came when I was 24 only. I went to the doctor three times during these 9-10 years, and got some strange results - none of the doctor were interested in investigating my bowel problems and diarrhea. I once was told that those were "emotional problems".

I started taking medicines in the start of the year; it feels like mesalasine does not work with me, but prednisone does pretty good. I'm now reduced to 5mg/day of predinisone and starting to feel the symptons coming back, specially the diarrhea and abdominal pains. I'm also taking azatioprin and mesalasine still, but those doesn't seem to be acting accordingly.

Crohn is having some heavy negative impacts on my academic life. I'm really afraid of failing my qualification exams and having to start all over again. I have a girlfriend who is very comprehensive about my problems and I try to explain it to her as good as I am able to, but still I'm afraid of failing her too.

I have some family issues. My brother died at age of 12 (I was 9; he had hemophilics and broke his leg due to wet kitchen floor; hemorrage and you can deduce the rest) , we live under some financial.

Therefore, life has been very gray for me. I don't think it's easier for other people with Crohn's, but i'm really depressed right now. I'm afraid of having all my symptons all over again, because I have been lowering my dose of prednisone, and having my life screwed because of this stupid disease.

 

[mikeyarmo]

Welcome to the forum Gustavo! I visited Brazil last year and thought it was a beautiful country.

I am sorry to hear all of the trouble you have experienced with Crohn's Disease so far. It must have been very hard growing up being told you were just experiencing emotional problems and that nothing was really wrong. I experienced that for about one year and that was enough for me to question my own sanity, so I am sure it was very hard for you to deal with for such a long period of time.

Will school give you any special consideration due to your condition? Schools in North America typically are fairly accommodating to people suffering from disabilities and will make special accommodations for people with Crohn's Disease.

It is good that your girlfriend is understanding. I am sorry to hear that you are feeling depressed right now. It certainly sounds like you and your family have had your challenges and you are evidently very strong to have achieved so much success in school with everything else going on in your life.

All of us with Crohn's make up a family and we are there for you. If you feel like you need a bit more support though you should look into if there is a therapist you can speak with. You might be able to find someone through your school that you can see. You deserve to be happy and not be have to live in fear and I would recommend taking whatever action is necessary to help you achieve that.

Take care and know that we are all here for you and only wish the best for you.

 

[Angrybird]

Hello Gustavo and welcome to the forum.

I am sorry to hear that you are not feeling well right now. How long have you been on the Azathioprine and at what dose? Is your doc aware that you are having symptoms again? Also have you ever had any or your vitamin levels checked?

I am glad you have decided to join, there is a lot of helpful info and support here for you.

AB
xx

 

[David]

Hi Gustavo and welcome to the community. I'm so sorry to hear of all your problems I will say your english is very good though!

I agree with Angrybird, what dose of Azathioprine are you on?

And have you ever had your vitamin D, vitamin b12, folate, and magnesium levels tested? They're common deficiencies in Crohn's patients.

 

[Gustaff]

Hi guys!

Thanks for being so much supportive! In my last post I was really sad and down; I'm feeling much better now. I have read your answers during the weeks but I didn't had the time to post an adequate answer - I was having an important exam at university.

I am now at 150mg of Azathioprine, 3000mg of Mesalazine and 5mg of Predinisone. I have read somewhere that when lowering the dose you might have a small increase on the symptoms, probably because you need some time for your Cortisol levels to stabilize again. I'm not sure about this and I'm probably wrong, but it makes some sense.

I'm having some exams done, as my doctor requested within one months. Right now I just feel a little sleepy on the days I don't drink coffee I got some shots of B12 when I was in a really serious crisis two three months ago.

There was just one thing (besides the abdominal pain) that got me down. Both my father and mothers were smokers during my youth (father quitted smoking some years ago, but I already had the disease back then, undiagnosed). Therefore I was a second-hand smoker. I read on several websites that children exposed to second-hand smoking have a bigger chance of developing Crohn's. This can be very depressing. Does anybody knows if there's any truth in this? I also know that there might be a genetic predisposition to develop Crohn's, but I haven't found anyone else with this in my family (which is kinda huge, both in father's and mother's branches I have in each like 10 uncles and aunties).

And Mike, I tried searching for something related with the school support you mentioned. Beyond the financial support we're given to pay doctors and exams there's nothing else. All I can do is talk to the coordinator of my course about my problem, but there's no guarantee of any help. I have a really serious (and kinda hard - failing it twice means I'm out) qualification exam next semester and... I don't know, I feel like my bowels have some significative negative effect on my academic performance. Can't say I'm not afraid.

I also used to go to a therapist in 2010-2011 but I was living abroad and was unaware of the disease. I was afraid or ashamed of even talking about my intestinal disorder. But I guess it would be the best if I started some therapy again.

 

[Ckt]

Hi Gustaff! I'm so glad you found the forum. I am fairly new too and have found it invaluable! I go to a wonderful therapist and she is always on my side but having others who go through very similar experiences is important to me! And it has been helping me to feel more connected and not so alone especially when I am unable to venture out of my home due to uncontrolled diarrhea and pain.
I am the only person who has crohns in my family although a few have ibs. They have been tested for IBD and have come up thankfully to not have it. My father does have pernicious anemia which means his small intestine doesn't produce the factor needed to make and absorp B12. I think that's pretty interesting and have wondered if this is somehow connected..like, did I get that gene and then it mutatEd? I don't know the answer but will be finding out this week. It seems possible.
I think for us there are probably so many factors going into how we got crohns. If you can, try not to worry too muc about getting second hand smoke from your parents. yes, I could see how that would be possible..I think there are many many enviromental factors affecting our health. It may be true that some of us were exposed to toxic enviromental things without knowing it. For me, I feel there was a predisposition, then through years of an American diet(although I did eat veg and good food while growing up too!), being exposed to bacterial or viral infections, how I internally handle stress(this is controversial..I don't feel stress CAUSES crohns but the wash of hormones including natural corticosteroids released by the adrenal glands during stress attributes, I am sure),traveling and living in developing countries..so many factors!
Basically, we can do nothing to change the past. And even if we could,we do not know exactly what to change.so it's great you can focus on your school,you have a supportive girlfriend and sounds like a great big family,and I'm sure many friends!you now have more friends here!
I hope that helps..no real answers I know but tons of support!

 

[Gustaff]

Hey, every kind of support is welcome!

I've been trying to manage my stress levels. I've been running and doing some exercises, and it's been of great help!

I know I can't change the past, and I think sometimes I just search for a reason fir the problem. I think this would motivate myself, but probably knowing it wouldn't help in anything. It's really hard to fully accept it, though I've been seeing some members here in a worst situation than mine that seems to deal with it so much more maturely (does this word even exists? ) than me.

*sigh*

 

[Ckt]

Gustaff..I'm not sure how 'mature' I am in handling my crohns!some days,even at 51,I want to crawl into my bed and just veg!and actually I do just that! I feel the same as you..there are so many here that have it worse off than me and seem to be able to handle jobs,children,and their crohns! I can't work and haven't for 10 years which hasn't helped my self esteem one bit. But I had come to see we all handle what we go through the best way we can.
I think it's fantastic that you're going to school, working out, able to be in a relationship all with coming to terms with a new diagnosis of crohns.
There's a great book I have been rereading about dealing with chronic illness called 'the chronic illness experience'. It's the best one I've read on this subject and it's my to go book when I feel alone and like I'm not being the 'noble patient'..I expect myself to be extremely like the silent sufferer with a smile painted on my face all the time! It just isn't realistic for my experience.
Here's hoping all things wonderful for you!:hug: