I need to scream a little.

[CanadianCrohnie]

So here goes.

None of my friends understand this disease, and it's hard to keep friendships when I'm constantly sick and unable to hang out. I need to make friends though, I'm so depressed. I haven't seen anyone outside of my home for months. I'm taking an extra year of highschool this year, and because of this, what little friends I had are all in University. They've moved on with their lives and I'm still stuck in the same old rut I've been in for four years.

I'm so ashamed and depressed, and I can't show this to my family. I don't want to worry them even more than they already are. I'm 19, have had to quit my part time job, haven't gotten my drivers license yet, haven't achieved ANYTHING in my life yet, I've never dated anyone, never even kissed anyone.

I feel so alone. I'm always sick. I'm so tired.. I've been sick for years and I can't take it anymore. I'm so worried. My future isn't fathomable. WHAT future? I don't know if I'm going to be able to graduate with any degree in anything because of this illness. If I do, I'll be so old by then. I want to be young and have fun but I can't. I'm 19. And I look like I'm 14. I couldn't go to prom. I skipped all my birthdays.

I'm not feeling sorry for my self. I'm just super angry about it. :frown: I'm so angry. I hate this, I hate everything. People say, "don't let this disease define you."

Well sorry... it already has. It's defined every aspect of my life, from when I was seven years old, till now.

God. I'm not one of those people who vent like this. I never do this. I'm going to regret posting this. Already do.


And really. Why am I so depressed about it? Oh the irony. My struggles haven't been as hard as a lot of other people here. In fact. I'm extremely lucky. Sooo lucky. Which makes me even more angry. I feel like my struggles and my anger and sadness and feelings aren't justified.


I'm just so scared for the future. So desperate for a cure that will never come. So depressed that my body is ruined for future partners. I have hemorrhoids the size of grapes. Who would want to fuck someone like me?

These words aren't and can't describe the acute agony I'm emotionally dealing with. Nothing can. I hate this life.

Sorry for this stupid post. I'm so sorry. :'(

 

[Cat-a-Tonic]

Hi, welcome to the forum. I hope you don't regret posting this. For what it's worth, you've vented to the right people. Believe me when I say we understand what you're going through! My heart goes out to you.

Just because your struggles haven't been as bad as some other people's have been, that doesn't mean that your feelings aren't valid or that you should bottle up your emotions. What you have been through undoubtedly sucks, a lot, and you have every right to be mad, depressed, upset, sad, or whatever you're feeling. It's okay to be emotional about this. You have a life-long, incurable illness and that really sucks, period. It's like an ongoing grieving, in a way. You need to grieve the life you don't get to have, the things you don't get to do, the person you didn't get to be. It's totally normal to be feeling everything that you're feeling, it really is.

A lot of us deal with depression - it's a legitimate symptom of the physical illness. (They don't seem to understand it very well yet, but there's been studies showing that there is a link between altered gut bacteria - which us IBD'ers tend to have very altered gut bacteria when compared to the non-IBD population - and mood, behavior, serotonin, depression, etc. It may help you feel better, as I know it helps me feel better, to think of my depression as a symptom, not as some sort of shortcoming or failure on my part which is what it feels like sometimes.) Are you getting any sort of treatment for the depression? Is there a counselor at your school that you could talk to? Or could you talk to your doctor about it without your parents knowing? I understand not wanting to worry your parents, but it sounds like you need some help and I hope that you're able to get help for the depression. There's no shame in talking to a counselor or being on antidepressants, I promise.

As for potential partners and sex appeal - I can only speak for myself, but in all the time that I've been ill, and my own grape-sized hemorrhoids, my husband still seems to think that I'm sexy. It really is possible to find someone who sticks by you through the good, bad, ugly, bloody, barfy, poopy, ugly-crying times. I think, though, that from what you've written, you need to focus on yourself first before looking for a partner. If you can find ways to feel better about life and about yourself, you'll be in a better place mentally to find a partner.

Aside from the mental, it sounds like the physical side of your illness is not going well either. What medications are you currently on? Have you been able to achieve remission? Do you see your doctor regularly?

I hope this was somewhat helpful. We're here anytime to support you, so please don't be ashamed of venting to us. We're here for you and we get it.

 

[ronroush7]

Don't apologize. All of us have felt like venting at some point or another. This is a very supportive group. Feel free to come here any time you need to. There have been times when I have had chores to get done and this disease slows me down. Wish you the best.

 

[CanadianCrohnie]

Thanks for the reply..


I've managed to control my crohns with the scd diet... and until recently was on AMAT (anti map treatment, not sure if you know about it...) for almost a year. I was doing great when I was on it.. it was amazing. remission was there. No pain. I had a life! Happiest (almost) year of my life. When I came off of it though due to stenosis (I healed too fast; we were worried about obstructions) things got worse again. Not really mentally prepared or strong enough for another flair up.

I don't believe in drugs (Remicade prednezone... or however you spell it). I've always avoided them. Never been on them. And now I'm faced with a GI who uses them for everything, and who is extremely closed minded, so I'm pretty worried about that. I've been dropped by GI's before for refusing treatment with them. And it took a YEAR to get this current GI to take me.

I don't know, my heads a mess.

 

[Absentminded]

Bother, I wrote a really long message and then my iPad had a wobble and deleted it all.

I'll try and recap what I wrote.

Please don't feel that you have to apologise for writing what you did. I'm pretty sure that most of us wth IBD have felt exactly like you at some point, you're definitely not alone.
Personally I have struggled with depression since I was a child and for many years also felt guilty that I was depressed when I really had no reason to be, I had a happy childhood, no money worries, lovely parents etc. But then my psychologist pointed out to me that it doesn't work like that, you can't help being depressed, it can happen to anyone. And once I'd made peace with that I finally realised that I didn't have to feel guilty.

As Cat mentioned, there will be someone out there who sees past the Crohns and sees what an awesome person you are. I have big scars and a huge dent on my tummy from surgery (not to mention the haemorrhoids!) but my husband still thinks I'm attractive. I own my scars, I'm proud of them as they saved my life.

I hope you find something that will put you back into remission soon. Don't write off medication altogether, but at the same time I respect your way of treating your disease so far.

Sending you a big virtual hug X

(I'm sure I wrote more, I can't remember what though!)

 

[DJW]

Hi CanadianChronie,

No need to apologize. This disease can take a huge toll on us both physically and medically.

Sending you my support.

Edit: may I ask why you don't want to take the medication? I understand if it's not something you want to discuss right now.

 

[CanadianCrohnie]

Hi CanadianChronie,

No need to apologize. This disease can take a huge toll on us both physically and medically.

Sending you my support.

Edit: may I ask why you don't want to take the medication? I understand if it's not something you want to discuss right now.

I don't believe in treating this disease by suppressing the immune system, because I don't believe in the science behind it. Not to mention the side affects and long term issues that come with it.

Boosting the immune system is the better way to go.(Imo)

It's complicated. Hard to explain. But here's a link that sums it all up nicely (AMAT. I took this treatment, along with boosting my immune system and it did wonders.)

I believe in it (and a few other things) wholeheartedly, as I've experienced it my self.

http://thecrohnsinfection.org/

 

[CanadianCrohnie]

Bother, I wrote a really long message and then my iPad had a wobble and deleted it all.

I'll try and recap what I wrote.

Please don't feel that you have to apologise for writing what you did. I'm pretty sure that most of us wth IBD have felt exactly like you at some point, you're definitely not alone.
Personally I have struggled with depression since I was a child and for many years also felt guilty that I was depressed when I really had no reason to be, I had a happy childhood, no money worries, lovely parents etc. But then my psychologist pointed out to me that it doesn't work like that, you can't help being depressed, it can happen to anyone. And once I'd made peace with that I finally realised that I didn't have to feel guilty.

As Cat mentioned, there will be someone out there who sees past the Crohns and sees what an awesome person you are. I have big scars and a huge dent on my tummy from surgery (not to mention the haemorrhoids!) but my husband still thinks I'm attractive. I own my scars, I'm proud of them as they saved my life.

I hope you find something that will put you back into remission soon. Don't write off medication altogether, but at the same time I respect your way of treating your disease so far.

Sending you a big virtual hug X

(I'm sure I wrote more, I can't remember what though!)

I've definitely written off medication all together... but thank you.

 

[Absentminded]

I've definitely written off medication all together... but thank you.

My Mum has UC and has treated hers without medication for a long time. Back in the 1970's she saw a naturopathic doctor who put her on the "Stone Age diet," I guess it might be what is now the Paleo diet?
She ate pretty much nothing but lamb, watercress and sunflower seeds for a whole year and then gradually added in new foods one at a time. She's now been in remission and med free for over 30 years.

I've also been medication free for over 3 years and I'm still in remission, I follow a sugar free diet which I find very beneficial. I have tried medications and I'm not against having them in the future if needed, but at the moment my Gastro is more than happy with how I'm doing.

What I'm trying to say (not very coherently though) is that I can understand where you're coming from.

 

[Jennifer]

Hi CanadianCrohnie and welcome to the forum. I'm sorry you're going through another flare. We have heard of MAP on the forum and I'm glad you were doing well for a little while at least. We do have a section on the forum for other diets if you're interested in trying them and there's also a section for Medical Marijuana if you would be interested in another natural alternative that also has great results. Have you tried liquid diets or juicing as well?

Once you find another treatment option that works for you then you will be able to do everything you want to do. Many do go off to college and live normal (or as close to normal) lives as everyone else. I wouldn't completely write off medication though as it can help you achieve remission quickly and help you avoid repeat surgeries that tend to cause more problems down the road. Keep doing research and remember that new treatments come out all the time.

Also check out some of the success stories on the forum of people who are in remission (mine is there as well): http://www.crohnsforum.com/forumdisplay.php?f=72 Good luck and keep us posted.

 

[Justanothercp]

Canadian
I was also very against drug therapy, but then my life, job and marriage fell apart because my quality of life was so bad all I could do was suffer/struggle through everyday. I ended up with bowel resection, my GI doc told me it was my life and my decision, but that if I didn't treat it my quality of life would suffer, I would likely have surgery after surgery possibly colostomy. He asked me if I had cancer would I not treat it?
Well, I started treating it with conventional Meds along with very strict diet and my quality of life is so much better and I hold full time job, and marriage
Your life your body, your decision and your consequences. Just keep an open mind.

 

[CanadianCrohnie]

Canadian
I was also very against drug therapy, but then my life, job and marriage fell apart because my quality of life was so bad all I could do was suffer/struggle through everyday. I ended up with bowel resection, my GI doc told me it was my life and my decision, but that if I didn't treat it my quality of life would suffer, I would likely have surgery after surgery possibly colostomy. He asked me if I had cancer would I not treat it?
Well, I started treating it with conventional Meds along with very strict diet and my quality of life is so much better and I hold full time job, and marriage
Your life your body, your decision and your consequences. Just keep an open mind.

Do you know... whats the best drug to treat moderate crohns...? I know this disease is highly personal and individual but besides the fact that I don't believe in them, it's the side affects of medicine that scare me.

 

[CanadianCrohnie]

My Mum has UC and has treated hers without medication for a long time. Back in the 1970's she saw a naturopathic doctor who put her on the "Stone Age diet," I guess it might be what is now the Paleo diet?
She ate pretty much nothing but lamb, watercress and sunflower seeds for a whole year and then gradually added in new foods one at a time. She's now been in remission and med free for over 30 years.

I've also been medication free for over 3 years and I'm still in remission, I follow a sugar free diet which I find very beneficial. I have tried medications and I'm not against having them in the future if needed, but at the moment my Gastro is more than happy with how I'm doing.

What I'm trying to say (not very coherently though) is that I can understand where you're coming from.

You're so lucky to have a supportive gastro. The one I'm with thinks I'm crazy. Our consultation appointment was so awkward when I explained to her my medical history and why I haven't been on any drugs yet. All she said was "we'll see about that"...

And that was that.

 

[Justanothercp]

Do you know... whats the best drug to treat moderate crohns...? I know this disease is highly personal and individual but besides the fact that I don't believe in them, it's the side affects of medicine that scare me.

Honestly, the side effects scare me to, still do scare me. But I just want to live and feel well enough each day or hopefully at least most days to enjoy my life and me a productive person. In the end, my decision wasn't too tough because I was just miserable/sick.
I went through a lot of trial and error with Meds before I finally found a concoction that seems to be keeping me stable. If you decide to go down that path, I think you need to find an MD that you trust and that listens to you and embark on the journey together.