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Crohn's has destroyed my life.

I'm 27, i have had Crohn's for about 5-6 years. It is killing me. My girlfriend left me because she couldn't handle the stress and i'm so sick of being tested on that i'm inclined to just give up.

Im alone all the time and in pain most of that time as well. My doctors have caused me more problems through medication and test.

I'm lost in all of my stress, anger and frustration and i have no one who even knows what crohn's is.

I dont mean to sound over dramatic or anything like that.

I'm really just on my last legs and i need help.:depressed:
 

Dukeis

Dynastic Overlord
There are a lot of people here that have been through a lot stuff. Everyone here is willing to help and support you. Do you have and family or member of the clergy that you could talk with there? I know more people here will be here to support you. Hang in there we are here for you.
 
I have family but there not the type you talk to and i am not a believer in Church or anything like that, I have looked into local groups for adults but that's more to get problems off your chest not talk about your illness.

As i said i just want to talk to people who have some knowledge of how much this disease can take from you.

I have lost everything i worked for because in the UK so little is known or done about this disease, and because of that the medications i was prescribed have done more harm to my body then if i had just let my Crohn's run rampant.

I just can do it anymore?!?!?
 

KWalker

Moderator
Hey buddy! I will be 23 myself in April and I've lived with crohns since I was two years old. It can be a great struggle sometimes and there are many times I, myself wanted to just throw in the towel. But I stuck through it, I explored my options now today I see myself on top and as a healthy young man. I'm sorry to hear about your girlfriend leaving and I'm sure it broke your heart but if a girl leaves at a time like this, is she really worth it? You're only 27, you've got so much going for you right now and LOTS of time to find a girl. And when you do, she'll be perfect. Somebody that loves and supports you, somebody that's there for you when you're in need, and she'll probably even be a cutie ;) lol

What kind of medications are you on currently? Would it be worth it for you to get another opinion? I know the testing sucks, and I went through it myself but to me, it meant I wouldn't have to deal with shitty doctors anymore because I kept going until I found one I liked. You shouldn't have to waste your time with doctors you can't trust.

You're not being over dramatic at all, so don't worry about that. There are many people just like yourself who are fighting this battle every single day and if you stick around the forum, which I hope you do, you will meet so many other members who are willing to go through your journey with you.

Just hang in there, I know it can be tough and it's not fair that we have to go through all this, but if you keep pushing until you get results you want/need and things will start to piece together.

Please let me, or anybody else know if you need anything at all and we are all here to support you. If you have any questions at all, please feel free to post.
 

Dukeis

Dynastic Overlord
There are a lot of people here from the UK and everyone can relate to what Crohn's can do to your life. This a place of support without judgement. You can fine people here that are willing to help!
 
Thank you to you all and i will stick around here. The fact is i complain about the tests but i do understand that in the long run it will help. My Doctors are good it's just with the NHS i dont get to see them as much as i feel i need.

I guess really i just wanted to talk to people who get that just coz you look ok on the outside your not in terrible pain on the inside?!?!

Thank you all for the support and kind words.
 

KWalker

Moderator
Oh of course. We completely understand what you mean. We've heard it all. "You should be thankful you can eat whatever you want and not gain weight", "you don't look sick", "you're too big to have crohns", etc. Some people just don't get it, but those who do are the ones that matter.

Were all here for you and we are all either IBD sufferers, or parents/supporters of an IBD sufferer. I know it sucks now, but I will be worth it in the long run, I promise.
 

Trysha

Moderator
Staff member
Hi SsoS
It is very good that you have found the crohn's forum and you will find plenty of support here.
Your feelings are similar to many of us here and sadly some doctors can be too busy to
properly listen to the patient and take in the whole picture.
It is understandable that some crohn's patients feel at the end of their ropes when medication fails and we end up no better with too many side effects.
Additionally sometimes families either don't understand us or can be less than supportive.
Romances sometimes fail, but then the people concerned are not really the ones for us.
KWalker has summed it up very well and if you just hang in it will get better and the right girl for you will appear sooner or later.
Most docs do their best but I think some of them must do better.
Treatments should take into account that we are in need of psychological help as much as physical , the sum total of our parts so to speak.
Hoping you will visit us again and keep us informed as to how things work out for you.
Feel better soon
Hugs and best wishes
Trysha
 
Hi hang in there it will get better :) sorry to hear about your girlfriend she's not worth it you deserve better. Just want to say am thinking of you big hugs we are all here for you:)
 

CrohnsChicago

Super Moderator
Hi there,

I'm 29 and was officially diagnosed last year. It was a rough year and I completely understand what you mean, there are times where I did (and still do) feel like I am isolated and a science experiment during all of this.

And it's hard to talk about to others who just don't get it. It feels like you are a broken record trying to explain something to someone that they will never understand unless they have the disease themselves. And they look at you as if they don't believe it is anything serious because on the outside you can look totally fine.

My biggest issue at the moment is trying to explain my weight loss to people. Being a girl, everyone at random wants to know what my secret is. I have to pretend in those instances and tell them "oh, just consistent diet and exercise...." and hope that keeps them at bay. It would be annoying to have to keep repeating "well, i sit on the toilet for hours a day and I can barely eat some days and I break into fevers and have all sorts of crazy medication side effects..." lol.

I've had to make a few lifestyle changes that have affected my social and dating life too which can be stressful. It helps so much to know this site is around and full of people who totally get it. I'm glad you are deciding to stick around on the forum and I hope you will find benefit from it as well :)

Hang in there, testing is a good thing. It means they are determined to figure out what's going on and to get you the most appropriate treatment so you can start getting your life back together.
 
This is a really good forum and am so glad you have come here to open up! This is the most active forum I have found and the support is just awesome!
IBD is quite the rollercoaster of ups and downs and it's only natural to go through some depression from it. A pity party as some like to call it. but... the party can't last too long otherwise you get stuck in the downward spiral.

As for the girlfriend... the right girl will come along and you deserve better. I never thought I would find anyone and I found the most awesome man in the world online! And I have an ostomy ;) see they are out there.

I really like Inflamed and Untamed as well, she has excellent videos on youtube about dating, depression, anxiety, you name it! She is awesome!
 
I'm 27, i have had Crohn's for about 5-6 years. It is killing me. My girlfriend left me because she couldn't handle the stress and i'm so sick of being tested on that i'm inclined to just give up.

Im alone all the time and in pain most of that time as well. My doctors have caused me more problems through medication and test.

I'm lost in all of my stress, anger and frustration and i have no one who even knows what crohn's is.

I dont mean to sound over dramatic or anything like that.

I'm really just on my last legs and i need help.:depressed:
hey that's all just hey. could say loasa plattitudes but they won't help so HEY
:heart:
 

kiny

Well-known member
Hey, crohn's disease is really hard on many people. I would take care of your crohn's disease as best as you can and find the right doctors, and for the rest try to do whatever you like in life that makes you happy, you're not alone, there are many many people with this disease just like you, try to relax and find people who care for you.
 
Ive always had a small stature and got bullied for it. As a result, I had irritable bowell and now I have Crohn's. I don't know what the worst part is... Sitting on the toilet for hours, explaining to people why your so small for your age(19),not being able to play sport properly, not being able to bulk up, struggling to concentrate, social anxiety, watching what you eat or the fact that people see you as weak and a recluse..
 
Sorry you're feeling down. Try to keep your chin up and I hope you get your life back on track. It's horrible, I know, but we have to try to not let the disease control our lives. Keep searching for something that works for you.
 

David

Co-Founder
Location
Naples, Florida
Hey there bud. I'm so sorry to hear of your struggles :( But it CAN and WILL get better! And you're definitely in the right place for people who understand and support you. In addition, the more you learn about Crohn's (we're here to help!) the more you can advocate for yourself to ensure you get the level of care you deserve.

Would you be interested in talking about your disease, symptoms, and treatments at this point or would you prefer to wait awhile for that?

We're here for you.
 

annawato

Moderator
Staff member
welcome to the forum ssos, I am so glad you found us. There is such an awesome group of people here from all around the world. Everyone is very open about their disease and nothing much shocks us so any questions you have, don't hesitate. No question no matter how basic is considered trivial. I have found the forum invaluable for both practical and emotional help and I hope you do too.
:heart: Anna
 
yep, its not easy.

is the fight worth it? yes its worth it.
and good for you for asking for help.

everytime i feel that urge to cry or give up, i give myself no other choice but to try something new or find something new that might help.I tell myself, im not quitting nor giving up, im here to stay and figure this one out, i have a burning vengeance to defeat crohn's, maybe i can pass that on to you.

since we are so incapacitated and disabled mentally physically, we DO need someone to helps us figure things out, but its a journey most people have never been on and very few would like to share or even know how to deal with, but if you have this website, we are the people who have been there sometimes as bad as you, and even some have made it out of that place. some of the answers may be here on this website, you never know.

here's my tip: diet changes can contribute to less symptoms, combine those with the right drugs and maybe there's hope. some have tried alternatives and have some decent improvements like boswellia and turmeric, and i will testify to turmerics power to help and suppress some symptoms, although turmeric is not something i recommend long term, but it could help you out untill you find something better, i have not tried boswellia yet. some of these have been scientifically proven to induce remission, also bilberry(proven), psyllium(soluble fiber/proven), Conjugated linoleic Acid(proven), although most proven for Uc and not crohns but the diseases are so similar. i also use a Resveratrol supplement which is derived from a plant traditionally used for gastrointestinal illnesses in traditional medicine, studies in mice show it can supress colonic tumor formation by 80% http://www.iherb.com/Doctor-s-Best-Best-trams-Resveratrol-100-100-mg-60-Veggie-Caps/7593, this supresses alot of my symptoms, more then turmeric.

if you havent tried lowering your lactose and sucrose intake yet, which is partly what the SCD diet is, then try adding that to see if it helps your symptoms. having said that, learn about the SCD diet or buy the book Specific Carbohydrate diet, its not required that you follow everything strictly. also, we are highly sensitive to yeast in commercial bread and almost all commercial wheat, i had had good luck with gold medal whole wheat flour i make my own unleavened bread products, i have tried 2 different brands of wheat and the difference is striking, bloating loose stools, its unbelievable how much better gold medal whole wheat flour is for people with crohns disease, i should write to them one day.

if you decide to follow the scd diet, making your own yogurt is hard, i suggest buying lifeway brand plain kefir, it is fermented 16 hours instead of 4 hours like most yogurt and contains multiple strains of probiotics, so it contains very low lactose, very much like scd yogurt which is fermented 24 hours to remove most lactose.
 
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Hi Ssos,

When times are rough and everything seems to be going wrong I tell myself 'everything is going to be OK' and I say it until I really believe it. Just over and over again. This has helped me a lot when I'm feeling down.

As for your ex-girlfriend, better things will come along. Better to be free to meet the right person than with someone who doesn't understand you and your illness. I've read stories of how wonderful and understanding spouses of crohnies can be and this is the type of person I want for myself. My ex was not a kind, understanding person and couldn't deal with my disease- with all the crap we go through we deserve to be with someone who will love us through the good times and the bad.

I really really hope things start to get better for you.
 

Jim (POPS)

Jim (Pops)
Location
Antioch, Ca
Hay Man, I'm realy glad to se that you made this thread. It shows that you are not giving up and that means you WILL get well. I got crohns when I was 61, ya, right when I retired and it slammed me, after 3 major operations I was good for a while but as soon as they did my reversal they found active crohns again and I'm going through the worst flair I have ever been through. You WILL find the help you need at this forum. I find that going to the CHATROOM has helpped ALT. The people in there are the best, we not only talk about crohns, but have alot of fun talking about everyday life with crohns that ONLY a crohnie would understand, I invite you to come and join us and find out for yourself, Keep your heed up man. it will get better.
 
Which hospital do you attend in London? I flew over to Charing cross for treatment and found them to be good- admittedly I went private but the gastro there told me that even if I was nhs he would have been seeing me far more frequently than my gastro at home would see me. It's very frustrating when your doc doesn't seem to have the same urgency over your condition as you do.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi SsoS and welcome to the forum! :D

Hope youo don't mind my asking but what medications have you tried already and what are you taking currently?

You're not alone with being sick of the testing, meds, doctor visits, and dealing with people who know absolutely nothing about the disease. Seems like everyone who doesn't have Crohn's becomes an expert on how to treat it when you tell them you have it. :p Eventually you learn who to talk to about it and who you should avoid talking about it. Most of the people I avoid talking about it to is my own family so this is really the only place I can go to talk about it. My husband is understanding and supportive but he can only do so much. You will find someone to share your life with again. Right now focusing on you and getting yourself feeling better (hopefully going into remission) is what's most important. Also there are a fair amount of members on the forum who are from the UK so maybe you might make some friends on here that you'll eventually be able to meet up with. :)

It may have already been suggested and hate to suggest another test but have you had your blood tested for vitamin deficiencies? Being low of deficient in some can bring on feelings of anxiety and depression. All the issues mentioned above can definitely be too much to handle but dealing with a vitamin deficiency on top of it all can make things harder.
 
hope you feel better soon

hey, hope your finding the support you need on here, i just joined recently to, i'm going though the tests too and dont have a diagnoses yet! nhs sucks! you really need to push to see your dr's, its shockig but you really do need to make a song and dance about it!
I cant imagine what you must be going through, hope you feel better soon, x
 
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I was just told i have Crohn's in jan and i am 42 and i thought my life was over i suffered since oct and they found meds that work for me , i still get pain dont get my wrong, but keep ur head up ur not the only person u have support on here. i love this site it has helped me alot
 
I know how Crohn's can just bulldoze through your life and make you feel like everything's changed for the worse. Your ex-girlfriend sounds like a pretty selfish person to tell you the truth. If it wasn't Crohn's, she would have left you in another vulnerable moment in your life so I'm glad she's gone. This allows you to meet someone you can truly count on. I'm rooting for you and hope you find solace and help in these pages. CrohnsForum is truly the best and everyone here wants to help. Sending big hugs!!
 
Hi I am a girlfriend of a guy with Crohns he was diagnosed in his teens had surgery in his earl 20's and is now 37 I love him with all my heart and do everything I can to support him. He was down in the beginning but he has learned to deal and live with it and you will to. Please don't give up things should improve in time and you will definitely find someone who cares about you and supporting you through your difficult times. It took a long time for Steve to meet me so just don't give up. We are all here for you
 
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