17 year old girl, newly diagnosed.

[emilyb431]

Hey there,
I was first diagnosed with Crohns in April 2016 and sent home with steroids. A few weeks later I didn't feel any better and returned to hospital. After a few CT scans there was plans to operate and for me to have a stoma. During the operation it was discovered I had a ruptured appendix and that there was no signs of Crohn's. I spent the next 5 weeks in hospital after my surgical drain site didn't heal and I developed sepsis. 7 months down the line a fistula has formed where this drain site is and I have received further testing into Crohn's.
Two days ago I saw a specialist and I was diagnosed officially with Crohn's Disease of the Terminal Ileum. I have also started azathioprine.
Since I've been diagnosed with Crohn's before I don't think this really hit me with what's happening and the actual 'disease' I now have. My close friends and family have been kept up to to date for the past 7 months and understandably when you don't physically look like **** (as I did in hospital) they don't fully understand the mental grind day to day.
I change dressings each day for my fistula but if it wasn't for that it's not clear I'm ill, and it can't be seen through clothing. It affects my self esteem but usually I forget about it until I 'feel' fluid coming out.... I find it hard to talk about it to new friends I've met during college and it's hard to even begin to explain this to a guy!
Any advice for Crohn's would be appreciated, I thought I'd join this forum to help write the thoughts down and also understand what others are going through.

 

[Honey]

Hi there, I am sorry to hear you are having a tough time. It does take time to get the right meds that help you. I was on several different meds, including the steroid you are on. Infusions too. It is a fickle illness , what suits one person may not necessarily help another. Ask your Consultant questions, I do. The more you are involved in your own treatment, the better you will feel. I hope you feel better soon. Let me know how you are doing.:rosette1::getwell::rosette1:

 

[ronroush7]

Welcome. I agree with the above. You also might keep a food diary to see what foods upset your guts. I am sorry for what you have been through.

 

[emilyb431]

Welcome. I agree with the above. You also might keep a food diary to see what foods upset your guts. I am sorry for what you have been through.

Thank you I think I will, as I haven't noticed a strong correlation with certain foods get.

 

[emilyb431]

Hi there, I am sorry to hear you are having a tough time. It does take time to get the right meds that help you. I was on several different meds, including the steroid you are on. Infusions too. It is a fickle illness , what suits one person may not necessarily help another. Ask your Consultant questions, I do. The more you are involved in your own treatment, the better you will feel. I hope you feel better soon. Let me know how you are doing.:rosette1::getwell::rosette1:

Did you have any side effects from the meds? My dr has mentioned injections in a few months if things aren't going as hoped, I've joined Crohns and Colitis, and ordered some good books to read to just understand and learn as much as I can about it!

 

[Jmrogers4]

Hi and welcome, I don't have crohn's but my 17 year old son does, he was diagnosed at 10 years old. I can tell you he has been in remission for the last 3 years thanks to remicade so besides infusions every 6 weeks he has no symptoms and is completely enjoying his senior year and looking forward to college. My husband has been in remission for about 14 years on azathioprine so if you can find the right treatment for you things can be almost "normal".
In the beginning of course the family knew but he only shared with a few close friends. He has been involved in CCFA from going to their camp for kids with IBD and will be a counselor there this summer to peer to peer mentoring.
Couple of things if you are in the US going to college (not sure about other countries since we are represented by so many on here) get in touch with the disability office at your college and sign up for disability services this can help with if you have to spend time missing class because of crohn's also housing so that you can have a private bath or semi-private.
Many also have support groups on campus or locally, it has helped my son to connect with others who get what he's going through, that whole but you don't look sick mentality.
Good luck, keep us posted.

 

[CYY]

Hi emilyb431! Welcome to Crohn's Forum!

I'm CYY, a sixteen-turning-seventeen year old girl who has just been diagnosed with mild to moderate Crohn's only a few weeks ago. For a decade, I went about my daily life with symptoms of IBD, but I'm just glad my CD did not escalate too much over the years. I'm so sorry that you developed a fistula, and now you're stuck here in a forum that you never wished to join. I hope you feel better soon.

As for me, I'm currently on Modulen IBD as part of my EEN treatment. I've been doing quite well on nothing but special formula milk for 4 weeks now, and if all things go as planned, I'll be able to start Azathioprine somewhere in mid-February. We can be Azathioprine buddies!

Modulen is tough, not only because I have to resist the temptation of eating and drinking, while yummy food is all around me, but also because of the judgement that I face when I bring Modulen to school. People don't understand how can I look perfectly fine at one moment, and be sick the next, not to mention that there were a few who suspected that my frequent visits to the hospital were excuses for skipping school. My peers also aren't used to seeing me living on nothing but "milk", and this sparks their curiosity, while there'll always be those few immature boys who will tempt me with nice food that they are eating. For the curious, I just explain to them that I have a rare disease, that causes me to be underweight and malnourished, and that I'm currently on an "intensive" treatment to gain some weight. I stop just short of saying that I've got a bowel disease, for fear that I'll be labeled as the "diarrhoea girl" for the rest of my time in school. :/

When I'm having a bad day, I'll take a look at this forum, maybe post a little something here and there to vent my anger. What I learned through it all, and I hope that you'll do too, is that everyone here is a great pillar of support, and they'll all be willing to lend you a listening ear and hear out your woes about your life. If you feel that you need a teen to confide with, my inbox would always be open to your messages.

All in all, I just want to let you know that you are not alone, there are many others who are like you, who are willing to hear you out and offer you some advice. Whatever you do, don't ever give up and I'm sure that there'll be light at the end if the tunnel. Stay strong and keep fighting! < (^^,) >

 

[Honey]

Hi Emily, yes I did have side effects to some treatment and had to come off. I eventually was on Remicade infusions for about 9 months but had to come off that too. I have been well, reasonably so, this last two years. I am on Steroids but may be going on Humira injections again in the future. It is an idividual response to meds. I found I can have pain etc nothing to do with what I eat. However, I know creamy or cheesy sauces get it going , so I avoid those. Eg Coleslaw. Best wishes.anda:

 

[Higbonzo]

Emily,

I get what you are saying. I feel for you! Seventeen years old and being diagnosed with a chronic illness is very complicated. I can only tell you we all have paths we must follow. This is true for all, but even more so with those of us with a chronic illness. You will find we all have likenesses and differences throughout our dealings with Crohn's.

I understand how hard it is to have, or get a lot of sympathy when, for all practical purposes, you look fine, but the reality is you are just hanging on to life. It is Very frustrating and you feel it would be better if you were gushing blood or had a limb missing. I understand your frustration. Over the years my reply to, "you look good", has become a simple "thank you". I spent years unloading on people about what was happening to me, but as years past I finally realized people like to live in their bubbles. They're not going to get it ever, it is not like loosing a limb or gushing blood. People can rap their minds around those things, they can't rap there minds around fistulas and ostomy's, etc.

As far as boys/men are concerned. It doesn't really change things much. Yes, you may find it a bit more difficult with superficial relationships', but meaningful relationships will remain, and possibly be even more meaningful. I've met plenty of people with Crohn's'/Ostomys, or worse, and they have no issues finding someone to love them. If you are a bright star, then you are a bright star, period. And we are all bright stars, whether we know it or not, we each touch other lives in ways we may never know.

You are a very tough individual. You will have plenty of challenges in your future, but we all do, you will just need to take special care of yourself now that you are aware of your Crohn's'. Get plenty of sleep, try to stay away from drugs and alcohol, eat what suits you and find ways to relieve stress through exercise that meets your current physical condition. Your brain doesn't know you have a disease, it is in fight/flight mode do to all the physical stresses from the disease. You need to get out in the light, and do some sort of exercise to relieve that build up stress in your body, walks do wonders for your overall outlook, but there may be times where that is outside your ability. Music, prayer, meditation, screaming, crying, reading, etc. What ever you find that works can be useful as well. And positive thinking will take you a long way. But, remember, we all have bad days and no one is happy all the time, so go easy on yourself if you get overwhelmed.

Wow, 17. It is a wonderful time in your life, just keep being you. You will be 18 soon enough, and before you know it you'll be in your 20's and living your own life. The one bit of advice I will pass on to you would be, get that degree you're after, no matter how long it takes. Stay positive, and stay involved, the world is a much greater place than most realize. My hope is you not get down or be hard on yourself, it is easy to do, but I hope you continue to be positive, sensitive, loving, and hard working. I know you are all those things just from your attitude towards taking care of yourself.

Peace and love

 

[Drew123]

Hey, so it usually is better to be forward with people about the disease or at least just bring it up before you sleep with someone. It usually helps you be lot more relaxed knowing that they know what's up. This is not to say if you meet someone at a bar, you have to immediately tell them you have an intestinal disorder, but sometimes, it's better than coming home with someone and having them ask, "what is that that you are wearing"then having to tell a story of how you have a colostomy bag when you're trying to be intimate. Honestly, just for being 17 and being able to tell people your story on this forum is a pro and you will realize that this disease helps make you into the person you are today and the person that your friends have come to like.

 

[Ricky_V]

So... after several CT scans your medical team was about to give you a stoma only to discover you had an appendix issue. That is outrageous!!!! Plus, You probably should have already been on biologics as early as last summer. You need to fire your doctors and get new ones that know what they are doing. Are you parents involved?



I am not a doctor,.. just my take



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