I feel so much regret and so lost right now

[gracifer]

Apologies if this is long.. just I feel I need to TELL someone how I feel, and not my parents cuz it'll just worry them even more.. apologies if this is an incredibly self - pitying post.
So my crohns was basically triggered by taking non-steriodrial anti-inflams when I was 19. I had been immensely unhappy during my first year at uni, had put on massive amounts of weight and was generally feeling insecure and everything else that goes with it. Kept going to the gym, and managed to get what i believe was tennis elbow... it was considerably painful, so I thought I should go to the docs about it. Only they prescribed me these pills and this was the start of a living hell. I regret taking them EVERYDAY. Its eating me up this regret. I WISH there was a time machine so I could go back and never take them and be able to live my life and have my health.
I thought, when I was finally diagnosed with Crohns (after months of being told its all in your head by docs etc, horrendous pain, weight loss, vomiting..) that this was it. FINALLY had a result. The steriods I was on made me go a bit loopy. There were times when wrapping my car round a tree felt like a good idea because then I could escape from how I felt, the confusion, the pain, and I'm sorry to say the 'why me? what have i done to deserve it?' I went through everything, is it karma, it is because im not religious enough? Stupid I know.
I had to drop out of my final year of uni because the flare was so bad.. I was able to finish but i only got a 2:2, and couldn't go on to do the MA I wanted. I know live back with my parents. (Uni was immensely unhappy for me anyway!)
AND now when I finally believed that maybe the crohns had taken a back seat, I learn i might have a fissula between my back passage and my bladder. All the same emotions have come flooding back. Plus i'm terrified. My mum says she can't cope with all of this, and it seems to be incredibly low as well, so I am so worried about her too. at the same time i'm so scared that I will need surgery, but, I just fele that this will never go away. I know it won't but I was hoping i could be on the lucky ones who can forget that they have it.
I'm 21, and feel like my life is over. theres so much i wanted to do with my life and i'm scared i will never live it because i will have all these horrible conditions that come with crohns. I don't even want to see my friends because of where my head is at. I know i need to drag myself out of this darkness/self pity but its hard. I was incredibly low for a period at school when i was much younger and don't want to go back there again, but at the same time i just feel so lost.
I'm so sorry this is a wo is me post. but, i suppose it is cathartic in some way. I apologise just my head is in a space and i just needed to tell someone.

 

[robbo87]

Hi gracifer, sorry to hear about how you are feeling. But it is great that you have found a place to let out your feelings where you don't need to worry about making family members worry. The feelings that you have gone through and are feeling now are very common amongst people with crohns disease, but something that can be overcome!..

I've been there myself, and when I was diagnosed at 21 I felt exactly like you do now, that my life is over... But it wasn't. Steroids helped my symptoms go away for periods, alongside other drugs, But Whilst already in a dark place, Steroids just make things so much worse mentally. I couldn't sleep at all, anxiety to the point that I hardly ever left the house, and when i did it was just to go out and drink myself stupid. I spent many a night just sat in my room feeling depressed. I myself have very often thought about the whole karma thing, and wondered what I have possibly done to deserve this, but the true answer is absolutely nothing, No one deserves this... But unfortunately that's life....

I never went to Uni, so I can't really say to much on that side of things other than well done for atleast sticking in there, and finishing your degree, even if it wasn't the result you wanted, so many people have had to leave uni altogether because they just couldn't cope due to illness. So there's an achievement in itself you can hold your head up high about and be proud off.

Don't ever think your life is over, because there is no reason having crohn's disease should stop you doing what you want in life. It only stops you doing those things if you let it.

I'm now 24 and since being diagnosed i've had 2 jobs, one which involved a lot of travelling around the country where I got to see a lot of interesting places. I've been on the usual lads holidays and weekends away. And if anything become stronger and more appreciative of things after the spells of depression I've had. I've spent 4 months this year in hospital and ended up having 2 operations and ending up with a bag. But now I've got used to it, it is part of normal life and although I don't drink alcohol anymore, I'm still going to the pub socialising with friends when I can and going watching Rugby matches and doing most of the things that i did before. If anything surgery will make your life better if it stops you suffering the pain and having the flare ups that you have.

Hang on in there buddy, You may be in a shit place right now. But i promise you, no matter what happens, Things will get better, Just be patient.

 

[handle]

Hi,
Never feel bad about letting stuff out. It is one of the ways of helping yourself, and a necessity, no matter what anyone thinks. This is a bad illness to have and the first year is the worst, usually, full of confusion and self doubt, and of course suffering. As you make your way through it all (and you certainly will) you will hopefully come to realize there was nothing you did that caused the illness. It isn't caused by N.S.A.I.D's, though they can make symptoms worse once you have it. There is no need to feel any guilt about having the illness.
Steroids wreak havoc on most people who take them (particularly emotionally.). If they don't put you into remission then you need to be on different medications (6mp, humira, remicade, LDN, liquid diet etc.) Steroids aren't meant to be used long term, and most G.I's know this. Remicade is good for fistulas, and may be an option before thinking of any surgery. Try not to worry about any remote prospect of surgery. If it's needed then it will be good for you.
I hope you have, or find, some people strong enough to support you. You are too young to go through this without some support. It's hard sometimes for even Mums to cope (though they should be there for you no matter what) and in time she will probably learn to be there for you without buckling herself! Give her a chance.
These-days there are some great medicines out there for you, and the chance of remission is good. Hang in there! You will find happiness, and strength, and a way through this difficult time. Good on you for writing down your feelings.
all the best.

 

[Lydia]

I was very sick when I was your age, and I went through some similar feelings. I found counselling to be immensly helpful. I went to a spiritual based counsellor but any type will do so long as they resonate with you.

Keep going back to your doctor about your worsening symptoms. Hang in there.

 

[JenniferH]

Hey Gracifer. I am so sorry to hear you are struggling so badly at the moment. I was diagnosed at a similar age to you and had the same difficulties at uni. I eventually had to leave after 2 years because I just couldn't cope physically or mentally. I was very very low and eventually went to see a counsellor because I saw no way out of a very dark hole.

But I am glad to say I came out the other side. 20 years, marriage, 3 children and a career later, here I am! Not always great, sometimes depressed, but ALWAYS happy to be here and ALWAYS proud that despite having a horrible illness I've achieved lots in my life.

You will most certainly feel better one day. You will have good days and bad days but as you will see from reading lots of peoples stories on here, there is always someone who knows what you are going through and there's loads of people who want to listen, so just keep 'talking' to us. There are also loads of funny and uplifting stories on here which def keep my spirits up.

I really really hope you begin to feel better soon and can look forward to what the future holds.

 

[izzi'smom]

Forgive me as I don't have Crohn's (my 4 year old does)...
Agreed that nothing you did "caused" Crohn's...please don't have regrets for this...it is a waste of time.
It must be so hard to be so young and have Crohn's. What is a carefree period of life for many of your friends must be painful, confusing, heartbreaking time for you. I am so sorry.
Is there someone you can talk to? I second that counseling is wonderful. It seems that your mom has her plate full (how thoughtful of you to not want to upset her) and you could use an ear (I love venting online but it helps to do it face to face). (For what it's worth, my 4 year old is in therapy as stress worsens flares and we want to be proactive about low stress around here )
Hope things get figured out soon...I'm rooting for you!

 

[lari]

I am glad you came here to tell of You problems cause that can make things a little better. Putting the words to the feelings and frustrations.... I just wanted to say that I have taken steroids off and on for 10 yrs and they can wreak havoc on your emotions. I can get somewhat paranoid over what would be a tolerable situation. I can over-react too. Not to mention a terrible temper.... These things have happened to me more than once so I always have to be careful when I take them. I hope things get better for you and wish you peace and comfort.

 

[gracifer]

Hi-thank you so much everyone for all your understanding! Its just so hard because noone in my family has it and my mum looks for a blame in everything, so the way she goes on about its really REALLY hard not to look for something that caused it. I think mum finds it hard because i'm her only child and i was relatively healthy until those 18 months ago! I get support from my dad, although he does do 'tough love.,' i feel like i can talk to him more. Stupid as it sounds i would like to see a councillor but again, I don't want to cause any more stress for my parents who i don't think would completely understand. In a way I just want to get to the future if that makes sense, bypass all this s!it and get there... it just feels like such a struggle to get anywhere if that makes sense...

 

[Terriernut]

Gracifer, I'm so glad you've come here. This is the most supportive place I've ever known in my life. Its also a place where you can speak about anything, with no embarrassment.

Taking those pills for your tennis elbow most definetely DIDNT 'cause' your Crohns. It may have made you flare, but it didnt 'cause' it. Crohns is most probably an auto immune disorder, and a course of anti inflammatories would NOT have caused this disease in you. So please....put that guilt away! You've done NOTHING WRONG. If you can put the guilt away, you can start looking at getting well. And you can start looking forward to living a very full life, which is what almost all of us do!

As others have said steriods cause havoc with us mentally, emotionally and physically. I'm either chipper as hell, or next minute I could absolutely murder someone and cackle in glee!! But steriods are not a full time treatment for Crohns. There are alot of medications to try. And I'm gonna ask that you start getting treated by a GI who is going to try help you further if you havent already done so.

I will also say, cognitive behaviour therapy is great! Quick, it works, it's cheap. And it will serve you for life.

You are so welcome here, please pull up a chair and have a good nose around. Things will get better, I can promise that.
:ghug:

 

[Keekee]

Gracifer!

Hope you are feeling better! I'm 23 and I was diagnosed with CD this January. I totally get what you're saying about Uni being horrible and such. I wasn't even diagnosed until I finally finished Uni, So i pretty much put up with it for 5 years before I got on any sort of medication.

Just like you I'm not sure why I'm writing any of this. This actually happens to be my first post on the website. I'm glad I found it, Mums been asking for me to get on it and things, but some how I thought i was better than support groups. That was until i read your post and realized that I should probably join the forrum, not for myself but to maybe help people like myself that need the help, in whatever way i can, and maybe somehow realize that there are people out there, strangers that are selflessly willing to help people in like us!.

What are your hobbies? Have you tried distracting yourself from your situation. I love movies so i watch a whole bunch of movies to stop from thinking about how horrible i feel/felt.

Since this is a vent post, I'd like to add my bit and say that i was recently in an accident and ended up with spinal compression fractures. Thanks to all the stressing i've been doing about my immobility, i have managed to trigger off a possible flare. I love eating and i hate when i cant. a flare up just means i cant eat what i want. i know i'll be able to move around once ive healed but now in addition to a horrible back pain, i'm stuck with tummy cramps. It truly is a vicious cycle this crohns.

gracifer, i hope you feel better! when i feel down, i think about all the people juston this website that have had crohns for years and have been strong and coped with it.

 

[gracifer]

I did something utterly foolish last night, i found out i had a fistula through the camera up the bladder job on friday and the consultant said he would get the MRI as fast as he can, and then we can operate before xmas! Only my symptoms were okish, not great but i wasn't having cr!p coming through my bladder into my wee. Last night i went and got drunk (3 glasses of rosae) with my friends. I just wanted to let of steam, felt i deserved it and noone said i shouldn't drink.. in fact when imentioned this to the consultant he said he would come with me.. so i thought it would be ok. Its not. Today whenever I pee its like i have all this brown stuff in my pee and sometimes its like wiping my arse and not my front bottom, its happened basically 90% of the time. i feel sick with worry. I thought perhaps going to a&e in my local hospital, but that would mean overnight (i want to reduce any time i am in a hospital as much as possible its horrible there) probs sfor an MRI to be fitted in sometime tomorrow.. then, i'd loose my consultant etc and be in a worse hospital. Rang my local doctor and he's in a meeting so he may or may not get back at 7. I feel like SUCH a fool! I hate myself for doing this to myself.. argghhhh! Before i was so scared about having an operation, but now i just wnt it done, all this waiting is doing my head in, i want to get back to normal and not be having this!! Im just hoping i've only irritated and tomorrow everythingn will calm back down.. if i could swear repeatedly and not have to write down it with ! in the middle i sincerely would...

 

[Terriernut]

It doesnt sound like the consultants would have expected THAT to happen, which could well mean, perhaps that wasnt the ONLY thing the caused that.

I can guess you are feeling well pissed off (pardon the pun) about this situation! I had a fistula thru my fallopian tube, so erm...I get it.

Yes, the sooner the surgery and getting well the better!!! Meanwhile, drink alot of water and plot your revenge on the damn bowel of yours!

:hug:

 

[lari]

So sorry to hear of your problem. But they can fix it.... and the waiting is the hardest part I know. Try not to worry and don't beat yourself up for going out with friends and letting off some steam. Whether you drank or not it was gonna happen anyway right? I hope all goes well and you are back to good real soon kiddo.

 

[jack dusty]

crohn's surgery, fears

To all crohn's suffers, it is quite natural that you may fear the thought of surgery, if this has been suggested for your debilitating awful problem,

The reason I submitted MY (lengthy)STORY 30/11, was entirely out of total sympathy to all of you, going through what I also suffered for so long, I find it extremely upsetting to read the stories of my fellow suffers, along with your personal fears, I have been there.

I was ten years in dreadful continuous pain, all day, every day 24/7 due to the same dismissive, neglect shown by several local GP's.

My advise is if surgery is offered is, take that offer with both hands, and quickly, it is nothing to fear, both the surgery and the pain after care treatment is far more advanced today than when half of my bowel was removed in 1966, 46 years of improvement of methods, pain relief etc.

I have never had the slightest sign of pain since that operation.

To my knowledge, the cause crohn's, is to date still not known and to date also to my knowledge, there is no known cure for this disease.

As told in My Story and I repeat, my relief from a GP caused flare up of severe diarrhea, 17/20 times a day, and lasting a 7 full years, came about when luckily my wife bought a carton of unsweetened Soya milk substitute.

My relief was almost immediate, and within two days of using this in place of cows milk, I use this in place of cows milk in tea, and on cereal etc, my visits to the toilet were down to 3/4 times a day max,

This is so today, 7/8 years later rarely more than twice a day, and generally my motions are formed, or close to that.

Crohn's disease is I understand, also systemic, it knocks out your immune system (keep clear of people with chicken pocks/ shingles/scabies) is the advice I have been given, and do not use over the counter anti -inflamatories.

Crohn's can not only cause joint pain around your body, it can also cause skin and eye problems, mouth ulcers etc.

I have all of those problems too, my prescription list contains 14 different products, 6 of these are for the crohn's, the remainder for the associated problems above mentioned, and in addition type 11 diabetes and Gastroesphageal reflux disease.

My story refered to earlier, also mentioned the fact that in April/May of this year my right kidney was removed since it was cancerous, and that a routine colonoscopy in November 2010, discovered that along with polyps on the remainder of my bowel.

One of these was removed at the time of the colonoscopy, the other was described as a flat polyp which required a different removal procedure, and which also looked suspicious.

This also was confirmed to be a cancer following another colonoscopy and CT scans, and following a pre-operation assessment last week, the remainder of my bowel is to be removed on the 13th of this month.

As I also stated in MY STORY/ history, with out wishing to sound cocky/blase' I am not the least concerned about the operation, just a little bothered about learning to manage the resulting colostomy, but I am aware there are more sites/forums on that subject and which I shall look at.

I wish you all peace of mind in your search for reassurance regarding your concerns with crohn's, please do not neglect your symptons, insist, on the removal of any polyps found, and insist on second opinions from surgeons, not GP's.

best wishes.

Peter (jack dusty).

 

[Stephy Chelle]

I'm new to the forum. My name is Stephanie. Hi Gracifer. One thing I wanna say first is....don't apologize for how you feel or posting your story, no matter how long it is. That's what this forum is for. Second, I am so sorry for how you are feeling. I've been there, where you are now and it DOES get better. You must first reach rock bottom before you can push up off the ocean floor and swim back up to the surface. And sweetie it doesn't get much worse from wanting to wrap your truck around a tree! I know what guilt feels like. I myself battle with it everyday but you, as well as me are worth it!! We both need to let go of the guilt because whats done is done. No amount of guilt is gonna change it. Feeling worthless isn't gonna undo whats already done. And all we are doing by feeling bad about it is losing even more time and what are we gonna do? Feel guilty about that time lost too? We both need solid support systems. A mix of family, friends and good doctors who know what they are doing. I've had doctors tell me my symptoms were all in my head too so I feel ya on that note as well. I hope you start to feel better soon.

 

[stickman7755]

I agree with Jack Dusty, surgery is the way to go. I had surgery December 7th and don't get me wrong, the recovery SUCKS!!!! However, I am about 2 months post op and I have not felt this healthy since I was a little kid. I am starting to eat foods that I havn't been able to eat in YEARS!!!! I still have bad days but they are getting fewer and fewer. Everything will get better, it just takes some time.

 

[Irene3]

Ah Hun, it was so sad to read that at 21 you feel this way. I agree that you shouldn't ignore your symptoms, get a good GI and take something OTHER then just Pred. Imune suppressants may work great for you.
I enrolled in uni, and twice withdrew after hospital stays, so you should be proud you got your degree, well done!
I too questioned the 'am I not religious enough' and even thought for about 4 yrs just as I had no idea what the hell is wrong with my gut, that it could be life dealing me karma for cheating on my ex. But Hun, take it from me, a chronic illness is just that, chronic. You'll have flares, yes, but like someone here wrote, you may be in remission if you take care of your chrones. I'm 29 and I still question religion, wether I should tithe, wether I should focus more on the bible (Iv always believed in God so I always go back to that line of thinking when I'm unwell). And Iv come to realize, that part of having a chronic illness, is excepting that illnesses happen. If you ignore it, it could get worse ( I had an emergency surgery because I ignored mine). Seek help whenever you have ANY new symptom. Keep a food journal, and speak to your doc about it.

And stop going down the 'is it I'm this that, not religious' line of thought. It's an illness!! And there are docs and antidepressants, and diets and vitamins ect. I still struggle in areas, but Iv come to understand that many cope with illnesses. And now I go tell my doc any new symptoms.

Please take care. If you have scuicidal thoughts, you NEED to speak to a counselor or friend. I too withdraw from friends when I'm unwell, but if I had thoughts like that, I'd be going to find any help available. Your 21. You have much to look foward to, so please go seek some advice, meds, and stop feeling bad for your parents, that your stressing them out!!!

BEST WISHES....please keep us posted, and I hope to see a happy update about how you have a great GI, and trying supplements and stuff. Take care.
Irene xoxo

 

[KWalker]

I agree with Jack Dusty, surgery is the way to go. I had surgery December 7th and don't get me wrong, the recovery SUCKS!!!! However, I am about 2 months post op and I have not felt this healthy since I was a little kid. I am starting to eat foods that I havn't been able to eat in YEARS!!!! I still have bad days but they are getting fewer and fewer. Everything will get better, it just takes some time.

That's not bad at all to have to go through the pain of surgery but then after two months feel that great. That's an awesome turn around for something like this!

To the OP: So many people go through what you've gone through with the stress of university. It's something really stressful and students feel like there is a certain level of expectation to fill and if we don't, we get behind and have a hard time catching up. I'm a student myself so I understand what you mean with what you say.

Things will start to get better now that you've found us! There is a lot of people on here who are either the same, or relatively close to the same age as you, and even a lot of students trying to deal with crohn's and school at the same time. There are also a ton of (a little bit) older people on here who have been through this before, and are now doing really well for themselves.

Always feel free to make a post with a concern or a "vent" because there will be atleast one other person on here either going through, or that has already gone through the same things and there is a countless amount of very helpful people on here!

 

[tots]

:sorry: Dont know how I posted this one Please read below :rosette1:

 

[tots]

Lost- I think that is a part of Crohns! Its a disease that leaves many of us unsettled. Its serious- its scary-its isolating. After all how many of us have family or close friends with Crohns or even who truely "get" it. You can't see it.... so you feel, do they really believe me? Is it as bad as it feels? The medications play games with your body as it helps it to heal.

This forum is a great place- everyone has gone through to some degree the things you are!

I was diagnosed twenty years ago and my mom still does not get it. Not sure why.... I can promise you I had these symptoms as a child. At times it hurts, at times I can blow it off. My
husband does not get it.... Somehow my kids do they are 23,22 and 17. They really are the best.

Keep in touch here with the people who are going through what you are! And its available 24/7 So you can log on and type anytime you want!!

Feel better!

 

[Kozas]

I know that this thread is pretty old, but I'm just astonished how similar I fell. I just had to register and post here(this is my first post on this forum btw)
Long story short: I always had moderate acne, sometimes it was pretty bad... 3 years ago I went to new dermatologist, she prescribe me some antibiotics. I had them before, they never really help long-term although she conviced me that this time will be different. HOW FOOLISH I WAS THEN. I really wasn't sure about that and almost I didn't accept that idea. But I just wanted to eliminate my acne. I was 21 then, and nothing in diet/topical helped.
So, after 3 months I had pain in my stomach. I stopped taking antibiotics, it was end of course anyway. And thing is that I live with pain last 3 years... I had problem with gastric acid, sometimes diarrhea. I had endoscopy but it didn't really show anything. Recently I had ultrasonography and they discover that I have stones in my gallbladder(but frankly I don't belive that's my only problem, and I still consider myself as undiagnosed). Surgeon told me that antibiotics could do it. And that's the thing - for last 3 years every time I wake up with one thought - that "it's my fault, and I destroy my health". I wake up with that thought, I live day with it, and it's my last thought when I'm going to sleep. It's almost all I think about. I know that many people here have much worse symptoms than me, and frankly I think that I could cope with pain and gastric issues. But this regreting is destroying me. I think only about that, and about past. How good it was, and how good it could be if I was a little bit smarter. Yea, I know that I can't turn back time but my mind is thinking only about that... When I was still on university I used help of psychologist(no anti-depresants, just therapy), and it helped me a little bit, but it didn't solve the problem. My parents really want's to help me, they support me(I just finished uni and looking for a job) and I am so bad to them. I'm still complaining, when they have their own problems(finiancal problems, to be honest my mother had to go to other country to earn some money and she was only person I could be really honest with. My dad is awesome guy but I never talking with him about emotions etc.)
I know that this post is kinda chaotic, but I just wanted to do something with my emotions, and this topic so much refers to me. Also I'm really sorry for my bad english, it's not my first language.

 

[Susan2]

STOP IT! You are not to blame, whatever the circumstances that you feel caused your current medical problems. You followed the advice of someone who was, presumably, qualified to give you that advice, whereas you were not qualified to make that decision. And the surgeon only said that antibiotics "could" have caused it. They might just as easily NOT have had any effect whatsoever.

You need to work on some strategies to change your mindset. It might be worth going to see someone who will help you with this as it can be difficult to get your mind to take a totally different route to the one to which it has become accustomed. You could, however, also do some simple things yourself. Exercise is wonderful for getting the endorphins going and they will help you feel more positive - and you can tailor the exercise to suit your capabilities, then just push it a little further each time. Yoga is also excellent for concentrating your mind on something other than the negatives that currently surround you, as well as being good for your body.

Then find other things that you can enjoy. Just be careful while you are in this very vulnerable state; if you go to the movies, for example, choose positive, uplifting movies not ones that will upset or depress you.

One old practice that works for some people is to stand in front of the mirror each morning and tell yourself at least one positive thing about yourself or your life. It could be something like: "I have loving parents and a home where I am welcome." Or "I belong to a Forum where I know that other people will understand my problems." :ghug:

 

[Kozas]

Thanks for reply... Before all this I really liked my time spent in gym but now... I just don't feel like me anymore. I forget how it is to feel good and with no pain. Don't understand me wrong - my pain is not severe, very rarely is unbearable. It's just constant. But like I said before, it's not the worst, my dark thougts are the worst thing.
But you are right, this forum is really good. I feel that nobody I know really understands my problems, but here are tons of people who really do understands. Hell, there are people here that endure much more than I and have positive view on life. Sometimes I still believe that I can archieve that too.