A pointless post

I've been diagnosed Crohn's for just over a year, and I just can't cope anymore. I've tried all the medical treatments possible on the NHS and everything just seems to stop working. I've never really made out of that first initial flare and I really don't want to fight this anymore. Because I don't physically look that ill (put on lots of weight from steroid use), the doctors aren't too worried about my case, so haven't mentioned surgery etc.

I want to die, and I can't even tell anyone around me. My boyfriend couldn't understand any less if he tried, and I moved into a new area at the end of last year and have very little in means of support network around me. I have tried therapy, but it hasn't helped me.

I'm not sure the point of this post, I don't know, i just needed to tell someone. Suicide just seems like the best option now, it's that or years of suffering, taking up space in the world.

Hi. Don't even consider something like suicide. There is a great support network here. You are welcome anytime. Feel free to pm me anytime.

Honeybee613 said:

I've been diagnosed Crohn's for just over a year, and I just can't cope anymore. I've tried all the medical treatments possible on the NHS and everything just seems to stop working. I've never really made out of that first initial flare and I really don't want to fight this anymore. Because I don't physically look that ill (put on lots of weight from steroid use), the doctors aren't too worried about my case, so haven't mentioned surgery etc.



I want to die, and I can't even tell anyone around me. My boyfriend couldn't understand any less if he tried, and I moved into a new area at the end of last year and have very little in means of support network around me. I have tried therapy, but it hasn't helped me.



I'm not sure the point of this post, I don't know, i just needed to tell someone. Suicide just seems like the best option now, it's that or years of suffering, taking up space in the world.

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Honeybee

This isn't a pointless post. This an an important one. I think it needs to be addressed. Chronic illness kills people. It hurts me to read your words. Just because you've tried therapy doesn't mean found the right therapist. One that will walk through it with you. I'm so glad your willing to trust us with something your keeping secret. When depression this low, it the deepest hole that you seem you'll never get out of. But that's the lie. Look back at your life. What is constant? Change. Reach out to your husband. Thank you for reaching out to us. I've been there before and I tried. 90% kidney failure. No one was nice to me. They were angry. Luckily I got a second chance. It's not worth it. Things got better for me. At the time, I honestly didn't think I could take another breathe of being alive. Well, I did and you can. One step at a time. I love my dogs. I knew no one would love them like I do. I hang on to that. I love Jesus. I'll never understand why I didn't fear his wrath. I thought He'd have putty on me. Find someone or something to hang on to. Please open up. You did it here. You can do it in the real world.

Finally, what could I do to help you?

We're here for you. The disease is a nasty thing that will play with all sorts of your emotions. You should really see if you can talk to a therapist who specifically talks to people with chronic illnesses. i find that therapists who see more chronic illness clients are more sensitive to their language. As a child I saw a therapist who tried to accuse me of faking my issues because I was a middle child...

Honeybee,
I know what you are going through, I went undiagnossed until I was in my 40's I felt isolated from the rest of the world, I even faced rejection from my family. I felt different, people told me I was useless and I even believed them. Along with that I had to carry the pain of the disease, which is like torture and map my life around toilet stops. I wanted to give up, but there was some kind of force that told me to keep going on with my life.

Many of us here have walked through the valley of darkness. It took its toll on me, but I took the lemons I was handed and made lemonade. We only get one chance at life, and I was not about to let the disease take me down. I ended up having surgery that left me with a colostomy, and with remission (and some flares in between) I have found a compromise that has brought balance back into my life. Its not perfect, it never is, but I do now have life, and I cherish it despite the ongoing Crohn's.

Hang in there, when one gets deep into that valley of darkness, there is only one way out and that is back up into the light. Life has many turns, and just when it appears hopeless is when things finally start to improve. I'm hear any time you want to talk, here on the forum or send me a Pm.

I honestly do understand how you feel, having been there myself, but please don't harm yourself. It is possible to have a reasonable life some of the time despite the Crohns, though it takes a massive amount of adjustment to accept the changes the disease forces on you. You've only been diagnosed for a year and that's not long to come to terms with the shock, especially as you're still in a flare. That can really get you down, it did me too.

There is never a pointless post here, every one of us have a chronic disease and understand just how low things can get, the great news about this forum is its "open 24/7' someone is always here to answer a post.

Sure hope you find some help and a bit of peace here, NEVER give up!!

If you need to "talk" at all tonight I will keep checking here to see if you need anything



Lauren

Hi everyone,

Thank you very much for all your replies, makes me feel slightly less alone... could you possibly expand more on how you learnt to cope with having crohns? I just feel at the moment that there is no light at the end of the tunnel, and being in so much pain for a full year just makes everything seem so hopeless. I feel so separated from everyone, anyone I used to know is out living full lives and I'm just stuck inside with nothing bright in the future.

You have a good support system here. Medical science is making advances all the time which is hopeful.

NOT POINTLESS. There are I am sure many of us here who have at some stage felt as you do. It does pass. Things do get better. Sometimes you look back and wonder how you get through- but you did.

It sounds like you need to be impressing upon your doctors just how much you are suffering. They might give medicatins to help with your mental state or they might give start talking about giving you remission through surgery..but you need to keep pressing. It can be very frustrating waiting for wheels to turn if you are in pain. Also bear in mind that it is easy to see the stories of people on this forum and think how bad it all seems. For example I have been desperately looking for successful resection stories because I have just been referred for resection. There are few on here because those for who such an op was a success tend not to come back on here ..they have their life back - they go live it. Ie tends to just be people looking for info or support..people in need. so don't read too much into what is on here.

Developing a good relationship with doctors and persistence will help you get the care you need. Getting control over pain was a difficult one for me as the medical system has a negative view of opiates, but I find opiates the best way to deal with pain and has given me a reasonable quality of life. I had a lengthly talk about painkillers with my doctor and have the pills, but do respect them by using them sparingly.
Be willing to try the treatments available and be in control. If you find the treatment working, keep going with it, if not don't hesitate to go off the med and tell the entire experience to the doctor. Doing so provides important information that can help your doctor decide which treatment approaches are best. Holding back information will not help you.
Acceptance of one's health condition will give you more confidence in yourself, and just by improving one's mental health gives the body strength to help fight back the IBD.
Its hard, but staying positive, confident and remaining in control will all help.

We all go through ups and downs, I assure you. I have had many problems especially the last couple of years. Five surgeries in 2016 , some tough stuff! However, I try to not let it define me, this Crohns thing. It has won some rounds, feeling super down and defeated at times. But I am a momma of three, a wife, and a Grammi of one. I am also an educator who pushes through and comes home only to literally collapse at the end of the day. I also depend on my faith to get me through - first and foremost. I am FAR from perfect, far from healthy. But too determined to give in. I am saying all this to let you know, while there are days, weeks, even months, when you will feel like there is no hope. But there will be days, weeks, and even months when you realize that fighting this thing CAN be done successfully. Colonoscopies, surgeries, multiple daily bathroom visits, weight gain and loss and gain again, medicines...all part of a list of things that are now in my life, but they will never be allowed to become my life. Prayers for you!

Hi Honeybee, here are a few things that I do which help me cope.

First - find a hobby. I can't tell for sure from your posts but it sounds like you're not able to work right now? When I'm too ill to work, I crochet. It doesn't take a lot of effort so I'm not wasting my precious little energy, and it was easy to learn. And I can make useful items like scarves, hats, blankets, etc which I can then either use for myself or give as gifts or even sell online. Last year I had a terrible flare, I was hospitalized, I was off of work for a month. I crocheted so much during that time. It really helped me feel worthwhile and gave me a task to complete so that I felt like I had some value in this world. And all my family members got handmade xmas gifts from me because I made so many blankets during that time.

Second - keep a gratitude journal. It sounds a bit cheesy but it really helps put things into perspective. When everything is looking dark and horrible and sad, it's hard to see the good in life. But if you write down every day just one thing that you're grateful for, it might help. And certainly couldn't hurt.

Third - keep posting on the forum. Everybody here can relate to what you're going through because we've all been through similar. Depression is a very common symptom of IBD, and I think most if not all of us have been to a similar dark place in the course of our illnesses. I sure have. I'd reach through the computer monitor and give you a hug if I could. It definitely gets very difficult at times and it seems like there's no way out, no light at the end of the tunnel. But please, trust me that there is a light, even if it's very dim right now. Keep talking to your doctors, or switch doctors and get a second opinion. If the treatments have failed then ask for other options - surgery? Clinical trials? EEN (liquid only diet)?

Keep going, hun. I know it's sometimes the most challenging task just to keep putting one foot in front of the other. But don't give up. We're all here for you so please keep posting and please don't give up.

It's important you find an outlet. Perhaps something like writing or music. Prior to diagnosis I was really in a bad state and just writing my feelings down helped me put everything out there without feeling judged. When I was then diagnosed I liked watching YouTube videos of people with Crohn's and enjoyed talking to them--almost venting. They understood and that made me feel not so alone. Yoga never worked for me.

It will be 3 years in August for me and I still struggle daily. At this point I don't think I have found a definitive way to cope with having crohns because in reality--the Crohn's continues and changes. One problem develops to others but I haven't given up hope. I remind myself even on the darkest days that today is just a minor setback and cling to hope that I'll feel better tomorrow. Doesn't always work but im trying hard to cling onto good things that happen so I don't always dwell on the negatives. Not too long ago I started to document really happy things that happen to me. Funny jokes with friends. Memorable family moments. People would ask me what was something that happened on the weekend at work and I couldn't remember. I forgot the little things in life.


I don't have much of a social life. I've had to cancel plans too often. I can't go clubbing like many of my friends do or drink. But I have a small group of people in my life that gets it and will come stay at my house if I can't go out. Those are the people you need to surround yourself with. People who won't make you feel terrible for not being able to do certain things.

Honeybee613 said:

Hi everyone,

Thank you very much for all your replies, makes me feel slightly less alone... could you possibly expand more on how you learnt to cope with having crohns? I just feel at the moment that there is no light at the end of the tunnel, and being in so much pain for a full year just makes everything seem so hopeless. I feel so separated from everyone, anyone I used to know is out living full lives and I'm just stuck inside with nothing bright in the future.

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Sarah, I am glad you have a good support group.

Especially when you are first diagnosed, you have a lot to chew on!

-The knowledge that something really is wrong with you.
-All the new medications you're expected to take now.
-The extra medical appointments.
-And a complete change of lifestyle than what you're used to.

For awhile you'll feel pretty overwhelmed with all of this. But, that's what we're here for if you'll let us. Don't be afraid to send somebody a personal message too if need be. However, posting like you did you've already seen that you'll get replies too. Just let us know...

Hobbies are a great way to pass time and divert attention away from the pain. I needed a new hobby after the operation that did not require exertion. I turned to photography and now do a range of work from stills to video. I have several cameras and enjoy what I can capture on the dash cam too. The hobby is not expensive given the cost of cameras, and that they don't need costly film or developing.

One of the interesting aspects has been the passage of time and my acceptance with life. Around 2005 or so I was looking at my video work where a gray bearded man who I admired, who was he? He was me! That was the major turning point in my life when over 40 years of darkness of depression rose and was replaced by the sun. Despite a few setbacks a long the way, I can state with confidence that the ugly multi decade episode of depression is gone. I am living a second life after the near death experience in hospital fighting infection that almost took me. I am going to enjoy and make the best of my bonus years even though I have to live with a colostomy bag.

That i8 great, Bufford.

Honeybee613 said:

I've been diagnosed Crohn's for just over a year, and I just can't cope anymore. I've tried all the medical treatments possible on the NHS and everything just seems to stop working. I've never really made out of that first initial flare and I really don't want to fight this anymore. Because I don't physically look that ill (put on lots of weight from steroid use), the doctors aren't too worried about my case, so haven't mentioned surgery etc.

I want to die, and I can't even tell anyone around me. My boyfriend couldn't understand any less if he tried, and I moved into a new area at the end of last year and have very little in means of support network around me. I have tried therapy, but it hasn't helped me.

I'm not sure the point of this post, I don't know, i just needed to tell someone. Suicide just seems like the best option now, it's that or years of suffering, taking up space in the world.

Click to expand...

I was diagnosed with crohns in January. Fortunately for me it appears my flare up has calmed. They originally started me on the steroids and I too gained weight and was super depressed. I told the doctor and she said a side effect of steroids is depression and suicidal thoughts. So I can totally relate to what you're going through.

My doctor took me off the steroids (slowly) and I have felt much better emotionally. I highly suggest you speak to your doctor about this issue. My guess (I'm not a doctor) is you may be having a similar reaction to the steroids that I had.

I know it's hard but things that help with depression and fatigue is exercise. If you aren't doing any exercise, maybe try that too?

Honeybee613 said:

Hi everyone,

Thank you very much for all your replies, makes me feel slightly less alone... could you possibly expand more on how you learnt to cope with having crohns? I just feel at the moment that there is no light at the end of the tunnel, and being in so much pain for a full year just makes everything seem so hopeless. I feel so separated from everyone, anyone I used to know is out living full lives and I'm just stuck inside with nothing bright in the future.

Click to expand...

Honeybee - other than steroids, what medications does the doctor have you on? Have they done a colonoscopy? I couldn't imagine a flare up lasting that long!!!! Mine started in early December and went until about mid February. My flare up stopped about right after I started the remicade. Prior to that anything I ate had me running to the bathroom in terrible pain all day long. I still get bad stomach aches here and there, the difference now is it's not from everything I eat. I'm learning which foods cause it. I'm having a hard time with this because I can't eat what I like and what I want to eat. It's frustrating.

Because I'm new to crohns I don't really know how to answer your question about how we are getting through it. I still haven't figured out what's going on with my body either.