Kind of Feel Like Dying

[PinkThink]

Hello all,

This is my first post here and I guess I wanted to post this because I'm feeling really desperate and I really don't know where else to turn. I've had Crohn's since I was a child and I'm now well into adulthood - I feel like it's ruined my life and feel like I might be close to losing my job due to the disease. I would tell my employer but despite having the disease for my whole life I'm too ashamed to do so. I'd rather be destitute than reveal my secret (Which no one outside my immediate family even knowns about).

I don't have really any support and am not too close to my family.

I just feel like life has been a huge let down and life wasn't made to be lived by people like us. I often dream about killing myself on a regular basis. I think about it virtually all day, all the time.

I try to think of viable solutions but I just can't. There's no cure and I have to chose between continuing to fight (Which I'm quite tired of) or letting go. I honestly am at the point where I'd rather let go.

I've never really met anyone else in my life who had Crohn's disease so I don't know if anyone else feels like this, but I definitely feel like I'm at the end of my rope.

 

[Jo-mom]

Hi PinkThink - sorry you are having such a bad time. Many people who have crohn's have pretty normal lives. You shouldn't be ashamed of it. Don't let it define who you are. Are you currently on any medications? If you are on the proper medications/diet, you should feel pretty good and be able to live life normally. There are many stories on here - you should read the forum on Success Stories to give you some positive insight. It's good that you reached out - this is a really good website.

 

[PinkThink]

Thanks for the response Jo-mom,

I am on medication - Imuran, I've taken it for years, but lately I've been having a lot of join pain and severe stomach cramping despite taking the medicine (Particularly in the upper right portion of my abdomen). My stomach cramps so severely it makes a lot of noise (Especially when sitting down) and my co-workers have gone to making jokes about it. The GI doctor gave me an anti-spasmodic medication but it makes me too sleepy so I can't take it at work. Even with the Imuran and anti-spasmodic, I'm in a lot of pain and feel a lot of pressure in my stomach. I'm also tired all the time - I sleep for 14 hours on the weekends so I find I can't really get much done. I miss a lot of work due to appointments which makes me look lazy/undedicated, but I guess that's what I am?

I've had blood work and it's been normal aside from enlarged red blood cells. My WBC and sed rate have been normal.

I don't know, I'm just feeling pretty hopeless about all of it and the pain doesn't help.

 

[Jo-mom]

PinkThink - perhaps a different medication might be better? Have you ever been on a biologic? I won't pretend to understand this disease as it is my son that has it, but I have seen what it can do, but I have also seen when things are good. There are also many athletes and well-known celebrities that have had IBD. You should search on-line. They have all led very fulfilling lives. Don't give up. You shouldn't be feeling physically bad - there must be more that can be done for you.

 

[Guerrero]

Hi PinkThink, first of all welcome to this forum. You said you don't know anyone else with this disease, well here you are, you have find the right place to learn, share, and hopefully find some comfort and advices, anonymously and without judgements.

I understand your pain and can see why someone can get depressed with this condition. I feel depressed too sometimes, especially when exams or symptoms are bad.
The disease itself and the modification of the gut microbiota can lead to depression, so it's not your fault and you are not to blame. Maybe finding another treatment could improve both your symptoms and state of mind.

It's true there is no cure, but at least most of the time the disease is manageable through medications and surgery in worst cases.. also the research find almost every day new ideas and possible therapies, to fight it.

You can also talk to your doctor about your feeling, he must try to help you and suggest to consult a specialist. Otherwise don't hesitate to send messages here, i'm sure someone will be happy to help you

 

[Jonny84]

Hello all,

This is my first post here and I guess I wanted to post this because I'm feeling really desperate and I really don't know where else to turn. I've had Crohn's since I was a child and I'm now well into adulthood - I feel like it's ruined my life and feel like I might be close to losing my job due to the disease. I would tell my employer but despite having the disease for my whole life I'm too ashamed to do so. I'd rather be destitute than reveal my secret (Which no one outside my immediate family even knowns about).

I don't have really any support and am not too close to my family.

I just feel like life has been a huge let down and life wasn't made to be lived by people like us. I often dream about killing myself on a regular basis. I think about it virtually all day, all the time.

I try to think of viable solutions but I just can't. There's no cure and I have to chose between continuing to fight (Which I'm quite tired of) or letting go. I honestly am at the point where I'd rather let go.

I've never really met anyone else in my life who had Crohn's disease so I don't know if anyone else feels like this, but I definitely feel like I'm at the end of my rope.

Hi PinkThink - welcome to the forum. I am sorry to hear things have become so difficult - I've been where you are just now more than once,

My advice would be to identify your fears and try to let them go. I would definitely think about telling your employer about your situation. There is nothing, at all, to be ashamed about. I'm sure you will be surprised by their response and it will be a big weight off your shoulders. Once you address it, I can absolutely guarantee that it will be nowhere near as scary as it is in your imagination.

Secondly there is no cure but there are are a range of medications that can keep symptoms under control. Added to that there are some very promising medications in the the pipeline and the treatment of IBD is set to improve significantly in the next 5-10 years,

In life sometimes we have to face very difficult experiences and we have to fight and struggle but it will be worth it because of what we will discover when we come out the other side. I have fought against this condition for a long time, I've struggled, I've made a lot of mistakes and I have thought about suicide but I've also learned more about myself than a healthy person probably learns in ten lifetimes. You have done fantastically well to cope with this condition since you were a child!

Try to focus on solutions. If you are worried about your work - talk to them and see what they say. If you feel alone because you don't know anyone else with Crohn's, how can you address that? Joining this forum is a good start! Is there a Crohn's and Colitis organisation what can put you in touch with others in your area? Can you connect with people through social media? Or perhaps you have a friend or colleague that can put you in touch which someone who also has Crohn's? There are lots and lots of people out there in the community living with inflammatory bowel disease - you are not alone!

Stay strong and keep fighting!

 

[PinkThink]

Hi Jo-mom,
I have not tried a biologic yet as I have been fearful to go on one especially when it appears as though my Crohns is under control more or less (At least that's what the blood work always says, when I have an endoscope and colonoscopy they typically always find ulcers and inflammation, despite no elevated CBC or WBC). I don't want to take pain medications as I get sick from them and they make me too out of it to be productive both at work and home. The only time I feel well and I imagine what normal people feel like is when I'm on steroids, however, I know that every time I'm on them I can't stay on them for long due to the long term side effects. I'm aware there are stars and athletes with this disease, but I don't know, when you aren't a millionaire it's really difficult to pull through the day and achieve just as much as a healthy person because even with this disease you are held to the same standards as healthy people and just as much is expected of you, unfortunately it always seems like it's twice as hard for people like us. I'm sorry that your son has IBD - I wish him the best of luck with this illness. I don't mean to be pessimistic but honestly when I was a child, dealing with this was a lot easier, once the weight of the world is on your shoulders and you are an adult, it becomes more difficult (It's strange because I didn't think it would be as a child, but I guess I didn't know anything then). He's lucky though that he has family support. I hope you continue to help him into adulthood as I can't tell you enough how grateful I would be if my family did this.

Hi Guerrero,
I'm sorry you also get depressed from this illness. I think it would be impossible to have Crohn's disease and not be depressed honestly. My primary care doctor gave me an antidepressant as she was worried about my mental state at my last visit simply because I admitted to be suicidal from time to time, but I couldn't take them for long as they made me way to groggy/sleepy to be productive at work. I do data analysis so it is important for me to be mentally sharp and I've found it hard to find IBD medications that permit this. When I'm on steroids I feel 100%, even mentally, I feel good, but I don't know if that has anything to do with how they affect you mentally or if I simply am happier because I'm not in pain and I feel normal. My doctor also suggested I see a therapist but the cost is so very high and my insurance doesn't cover therapy at all, unfortunately. I really want to go to therapy but it's just so very expensive and I struggle with medical costs as it is.


Hi Jonny84,
It's unfortunate to know there are other people who have gone through such bleak times as myself Thank you for the suggestions though. I think I will discuss my problems with my manager during our next meeting and maybe he will be understanding or maybe I will get laid off, but I guess I don't have any control over that now - what's done is done. I have thought about going to a support group, however, I was sort of raised with the mindset that having Crohn's is quite shameful. My parents encouraged me to keep my health problems under tight wraps and try not to reveal it to anyone and to pretend like I didn't actually have Crohn's disease. They thought of it as a sign of weakness/shameful and that I should try to pretend like I'm like everyone else. I realize now that this probably wasn't very good as no matter how hard I try I've come to the realization that I am different from others - very different. My life is nothing like that of other people's my age who have never had/have health problems. I did once have someone I could confide in, my husband, unfortunately he died quite suddenly a couple years ago - since then it's been more isolating for me as he was the only person who knew about my health problems and actually cared. I have never told a single friend of mine about my Crohn's disease. In fact, I have friends that I have known for 5 years or so that have no idea.

 

[Jo-mom]

Hi PinkThink - my son is actually 20 and was diagnosed last year but yes he is lucky to have support. You should consider biologics. If you still have ulcers and inflammation even if your bloodwork is okay, this means your crohn's is not under control. This is probably why you are not feeling 100%. Biologics are safer in the long run than steroids. My son is on biologics and it has really been a game changer. You should discuss your options with your GI. I'm surprised your doctor hasn't suggested biologics yet. It doesn't sound like your medication is doing a solid job. Biologics can make you feel as well as you do when you feel well on steroids (without all the steroid side effects).

You feel this way now emotionally and physically because you haven't really felt 100% in a long time. I'm sorry that your parents thought you should hide your disease. It is not a weakness on your part. This stuff happens. And I am so sorry that you lost your husband. This is a lot for a person to take in. You should tell your friends. THey will understand. My son tells everyone and is not ashamed. His friends are very understanding. It will be a lot easier for you if you opened up to the people closest to you. You are letting Crohn's define you. You are not the disease. You should read some of the threads on the Success Stories. It might be helpful.

 

[Jonny84]

Hi Jonny84,
It's unfortunate to know there are other people who have gone through such bleak times as myself Thank you for the suggestions though. I think I will discuss my problems with my manager during our next meeting and maybe he will be understanding or maybe I will get laid off, but I guess I don't have any control over that now - what's done is done. I have thought about going to a support group, however, I was sort of raised with the mindset that having Crohn's is quite shameful. My parents encouraged me to keep my health problems under tight wraps and try not to reveal it to anyone and to pretend like I didn't actually have Crohn's disease. They thought of it as a sign of weakness/shameful and that I should try to pretend like I'm like everyone else. I realize now that this probably wasn't very good as no matter how hard I try I've come to the realization that I am different from others - very different. My life is nothing like that of other people's my age who have never had/have health problems. I did once have someone I could confide in, my husband, unfortunately he died quite suddenly a couple years ago - since then it's been more isolating for me as he was the only person who knew about my health problems and actually cared. I have never told a single friend of mine about my Crohn's disease. In fact, I have friends that I have known for 5 years or so that have no idea.

PinkThink - having Crohn's does not make you weak. It means you have immense strength. You have done fantastically well to cope with everything that has happened - you should be extremely proud of yourself.

Remember there is nothing wrong with asking for help or telling people about your situation. Keeping things inside makes them eat away at you - when you get them out there it lightens the load psychologically and emotionally. They are your friends and they care about you. They will be supportive. You never know - maybe some of them will know others with IBD.

 

[CrohnsChicago]

PinkThink - I am so very sorry to hear you have been struggling with your crohn's and with work.

I can relate to feeling like there is no support and also to not having close connections with family. Crohn's itself is an isolating experience and can make connecting to others and feeling understood and supported almost impossible at times. During my flares and even times after it has caused me much anxiety, depression, lost friendships and challenging relationships. The uncertainty of knowing when you will feel relief and when symptoms will come back or affect your work and personal life is tough to navigate.

But I'm glad you found the courage to share your story with us. This forum has always been a great way to find people who understand what Crohn's really does to our bodies and minds, and it's even a place to escape from the stress of Crohn's and life in general. Therapy has been very helpful for processing my feelings about all of this so that I can go about my day with a bit more ease, even when times feel very difficult. And I can honestly say that I now consider some of the people I first met on this forum a few years back my closest friends and support system when times get tough - even though some of us still have never met!

I sincerely hope you are feeling a bit better now and have found someone if not in person, then at least on this site that you feel comfortable talking to about your work and health situation. Please continue to share updates with us so that we know you are alright and you can see that you do, in fact, have folks ready to rally for you at least online if not in person.

Hello all,

This is my first post here and I guess I wanted to post this because I'm feeling really desperate and I really don't know where else to turn. I've had Crohn's since I was a child and I'm now well into adulthood - I feel like it's ruined my life and feel like I might be close to losing my job due to the disease. I would tell my employer but despite having the disease for my whole life I'm too ashamed to do so. I'd rather be destitute than reveal my secret (Which no one outside my immediate family even knowns about).

I don't have really any support and am not too close to my family.

I just feel like life has been a huge let down and life wasn't made to be lived by people like us. I often dream about killing myself on a regular basis. I think about it virtually all day, all the time.

I try to think of viable solutions but I just can't. There's no cure and I have to chose between continuing to fight (Which I'm quite tired of) or letting go. I honestly am at the point where I'd rather let go.

I've never really met anyone else in my life who had Crohn's disease so I don't know if anyone else feels like this, but I definitely feel like I'm at the end of my rope.

 

[PinkThink]

Hi everyone sorry for the late update. I believe my situation is now bitter sweet - I phoned the doctor about a test I had had done recently (HIDA scan and CAT scan) and found out my gallbladder is inflamed and not functioning so a lot of my symptoms should resolve once my gallbladder is removed. The bad news is I still think my job wants to lay me off. I haven't gotten the boot yet as I think my direct manager (Who I explained everything to) is very kind. I don't think the people above him share the same level of compassion though.

Jo-mom - Thank you for the reply, it really lifts my spirits to know there are supportive parents out there. And thank you for the advice with regards to the biologics as even though a lot of my symptoms have been attributed to my gallbladder, I think I may still want to switch medications.

Jonny84 - Thank you for the kind words. I'm amazed that someone has said I should be proud as I usually just receive feedback that I'm lagging behind my healthier peers. I try my hardest in everything day in and day out but I feel like just dealing with the disease some days is exhausting in and of itself. But I don't know at the end of the day if it's as hard as I think it is or I'm just making excuses for myself.

CrohnsChicago - I'm sad that there are other people out there who don't receive family support. I thought I was practically the only one as I've known people over the course of my life with diabetes and even MS whose families always seemed amazing with helping them out and taking their complaints with regards to things they couldn't do due to symptoms seriously. I always wished and dreamed my family was like this. As far as challenging relationships - I was fortunate in this regard with my husband, but lost friendships, yes, absolutely. I wish therapy was an option for me (It's far too expensive and my insurance doesn't cover it all) as it's been extremely difficult, but maybe I can save some so that I can go to a few sessions as I think it would be helpful.

 

[Jo-mom]

PinkThink - thank you for the update. You know you can always use this support mechanism if you have the need to share/vent/anything. Please keep us posted on how it goes with the gallbladder and your job. We are on your side.

 

[cmack]

Hi PinkThink,

Wow, sorry to arrive so late to the discussion. I apologize. I really hope things improve soon for you. You should be proud of the brave battle you have fought. All I can say is that I agree with pretty much everything that has been said above. I also wanted to let you know that I'm here to talk to as well. My conversation box is always open. Feel free to come here and speak, or to speak in private as well. I'm glad you found this site, we all stick together here. There truly is strength in numbers.

Kindest regards.

 

[paddywack]

Do you qualify for FMLA? Many smaller US companies that aren't required to offer it do have a leave alternative if they're made aware that you need one.

Jonny84 - Thank you for the kind words. I'm amazed that someone has said I should be proud as I usually just receive feedback that I'm lagging behind my healthier peers. I try my hardest in everything day in and day out but I feel like just dealing with the disease some days is exhausting in and of itself. But I don't know at the end of the day if it's as hard as I think it is or I'm just making excuses for myself.

You SHOULD be proud. Many people with crohn's aren't able to work. The fatigue is INSANE, even when the docs say technically I'm in remission. Many days it is exhausting. I find that I feel better with humor. Memes or goofy animal videos, whatever does it for you. And sometimes a brief pity party. It is hard to accept for me, but taking care of yourself (like RESTING when we need to) it not laziness or making excuses.

CrohnsChicago - I'm sad that there are other people out there who don't receive family support. I thought I was practically the only one as I've known people over the course of my life with diabetes and even MS whose families always seemed amazing with helping them out and taking their complaints with regards to things they couldn't do due to symptoms seriously. I always wished and dreamed my family was like this. As far as challenging relationships - I was fortunate in this regard with my husband, but lost friendships, yes, absolutely. I wish therapy was an option for me (It's far too expensive and my insurance doesn't cover it all) as it's been extremely difficult, but maybe I can save some so that I can go to a few sessions as I think it would be helpful.

I've been in therapy a lot off and on through my life. I have chronic depressive illness that was dx way before the crohn's. The meds aren't for everyone, and they do have side effects.

The best therapists, though, are good listeners who validate what you're feeling. They can't tell you what to do or how to live. They let you express and feel and if necessary develop coping strategies. It's very similar to hanging out with a good friend, except you pay your therapist and there usually aren't any snacks or margaritas, in my experience anyway.

My family is supportive, but somethings they can't understand because they can't SEE it. They can't see that my mind is blank and I have no idea what I was just doing. They can't see that my arms weigh a million lbs each.

Keep at it. If you don't have people you can vent to or joke with IRL, an online community can be a decent substitution.

The embarrassment, well. After so many colonoscopies and delivering babies and other procedures, you realize the medical community is mostly unphased by the constant poo talk. I don't talk about that in detail, but I do tell people I have crohn's, and sometimes I'll mention it's flaring. (shrug) Another day, another round.

 

[AdamShoberg]

Hello all,

This is my first post here and I guess I wanted to post this because I'm feeling really desperate and I really don't know where else to turn. I've had Crohn's since I was a child and I'm now well into adulthood - I feel like it's ruined my life and feel like I might be close to losing my job due to the disease. I would tell my employer but despite having the disease for my whole life I'm too ashamed to do so. I'd rather be destitute than reveal my secret (Which no one outside my immediate family even knowns about).

I don't have really any support and am not too close to my family.

I just feel like life has been a huge let down and life wasn't made to be lived by people like us. I often dream about killing myself on a regular basis. I think about it virtually all day, all the time.

I try to think of viable solutions but I just can't. There's no cure and I have to chose between continuing to fight (Which I'm quite tired of) or letting go. I honestly am at the point where I'd rather let go.

I've never really met anyone else in my life who had Crohn's disease so I don't know if anyone else feels like this, but I definitely feel like I'm at the end of my rope.

Hello all,

This is my first post here and I guess I wanted to post this because I'm feeling really desperate and I really don't know where else to turn. I've had Crohn's since I was a child and I'm now well into adulthood - I feel like it's ruined my life and feel like I might be close to losing my job due to the disease. I would tell my employer but despite having the disease for my whole life I'm too ashamed to do so. I'd rather be destitute than reveal my secret (Which no one outside my immediate family even knowns about).

I don't have really any support and am not too close to my family.

I just feel like life has been a huge let down and life wasn't made to be lived by people like us. I often dream about killing myself on a regular basis. I think about it virtually all day, all the time.

I try to think of viable solutions but I just can't. There's no cure and I have to chose between continuing to fight (Which I'm quite tired of) or letting go. I honestly am at the point where I'd rather let go.

I've never really met anyone else in my life who had Crohn's disease so I don't know if anyone else feels like this, but I definitely feel like I'm at the end of my rope.

Hey pink, I too have crohns and struggle with similar problems. Now I’m not the wisest person but the thing that helps deal with the dark thoughts are distractions. For me that is skiing and computer games. Just anything that can get your mind off your day to day stresses. Do you have any hobbies or passions?

 

[cmack]

Those are good ideas. I tend to immerse myself with home improvement tasks or hobbies during stressful times. It's a good way to chill out.

 

[AdamShoberg]

Those are good ideas. I tend to immerse myself with home improvement tasks or hobbies during stressful times. It's a good way to chill out.

Sounds like an interesting hobby

 

[cmack]

I like to turn wrenches and fix things. I'm a pretty decent mechanic... Everything, (the trouble too) just goes away when I'm busy and problem solving something besides my innards. I try my best to focus on the task at hand.

Live in the moment as best you can and look to tomorrow is my best advice. Always remember there is a solution to darn near every problem... It just takes time and focus to find it. Life is a journey and there are rough patches along the way. Remember, usually it can only get so bad before it begins to get better. That has been my experience. A friend of mine said, "when you feel like you get to the end of your rope, tie a knot and hang on." I always liked that one!

My best to all.

 

[Lady Organic]

Hi ThinkPink. I so hope for you you find a way to open up to that nice manager at your job. If you like your job and would like to keep it, its best you open up. Otherwise you can imagine the same issue could come again at any new job. Maybe you could have a Dr's note to help bring the conversation to your boss. You would not feel as alone. Explain this situation to either your GP or GI and they could write a good letter for you, explaining what condition you go through with your disease. ONce you open up, a huge load on your shoulders could come off, well I hope. THis letter from a medical authority could help clarify your situation and increase sympathy towards you. If this employer fallows and respect the work laws, you should be protected. Employers have to be cautious with people who suffer illnesses or handicaps and to not discriminate them. We have the right to be workers and to be accepted and respected with our condition. We are extremly courageous and usually work very hard at doing the job like nothing is going wrong inside. I belive that the more we accept our condition ourselves, the more convincing we will be at being accepted in any environnement. Seeing a therapist would sure help, but I know its so expensive What about a local community center? You might find a place where there is have a community social worker you could consult for free!
Regarding anti-depressant, it may be an idea to try another medication. Usually, after a month if you dont see an improuvement or if the side effects are too difficult, the dr will propose another one. I already took Prozac which is good for both depression and anxiety symptoms, no side effect.
Hoping you will find relief soon.

 

[PinkThink]

Hi everyone, thank you for all of the kind replies and useful advice. I had my gallbladder out about 8 days ago now and I have to admit the surgery wiped me out more than I thought it would. I still have some trouble getting out of bed and sitting up right plus still having lots of digestive issues so I'm not totally happy with the results. I have a follow up appointment with the surgeon but I'm feeling a little defeated as I was expecting to be "normal" again - or at least just have the Crohn's and nothing more to worry about but I guess life is never that kind.

Jo-mom - thank you for the support, my job is actually not looking that great at the moment as a big project my group was working on is now being cancelled so it may not just be me that's out of work unfortunately.

cmack - Thank you for the words of encouragement. I'm also very much into home improvement projects. I once absolutely loved putting a fresh coat of paint on the wall/re-finishing a cabinet/installing floating shelves, unfortunately I've become so depressed lately that I often can muster the energy to do any of it anymore. I just feel to exhausted/fed up and typically just end up sleeping when I get home or forcing myself to go for a run, which I don't really enjoy anymore either and I do more so for the health benefits.

paddywack - I believe I do qualify for FMLA, unfortunately that would mean unpaid time off and I really can't afford to do that. I don't want to outright give my age out, but I'm a very young widow (Like unusually young) so using FMLA would mean I'd have to deplete my savings a little which I'm trying to avoid.
I sometimes think I should be proud - but other times I still feel like a total failure. While I know that many people with Crohn's can't work and I know all too well how hard the illness is to deal with on a daily basis, I still feel like I've fallen short of my true potential. I can't help but feel like I could have been more if not for my Crohn's and I think my family feels this way too unfortunately. I do try to cheer myself up from time to time, but I rarely find enjoyment in anything anymore. I'm more often than not completely apathetic towards almost everything - even when I had my surgery they tried to get me to sign something asking if I required a blood transfusion if they could perform one to save my life, I declined to sign simply because I thought slipping away while under anesthesia wouldn't be such a bad way to go and I was somewhat disappointed to wake up.
I'm sorry you deal with depression as I can empathize all to well - I've been diagnosed with severe depression on several occasions, but I don't really feel like I am truly depressed. I was diagnosed with Crohn's as a child and I feel like I'm just miserable that I have an illness and not really depressed just because. I was forced to go to therapy when I was younger but that had more to do with other issues and I didn't really find it very helpful at the time. Prior to going I thought it was going to be beneficial, but I know when I was actually there, sitting across from the therapist I mostly cracked jokes and deflected. She seemed to like me as a patient and after only a month or two didn't think I was very depressed really and sent me on my way. I was okay with this despite the fact that I was still horribly depressed at the time.
It's good that you have a supportive family, believe me, having someone in the world that cares if you are dead/alive is much better than not. Even if they can't fully understand what it's like for people like us, if they show any concern/inquisition at all it's always reassuring. I know how that feels as I had that with my husband. He could never fully comprehend/understand the exhaustion, but the fact that he tried meant the world to me.
That's good that you have such a healthy attitude towards this terrible thing, but despite all the tests/exams/accidents I still feel so terribly ashamed about it. I wish I could find the strength to not feel like this but I can't seem to do so and considering I've had it for so long, I probably never will.

AdamShoberg - I used to enjoy distracting myself, but these days, I mostly feel like I'm just distracting myself, sitting around, and waiting to die. I can't help but think whenever I'm doing almost anything but sleeping or playing with my cats that it's just such a waste of time and I'm just ticking away the minutes until my life is over and I don't have to deal with any of it anymore. I mean, I used to enjoy games, TV series, reading... but since my husband's death I haven't really partaken in any hobbies at all. I mostly just sleep and exercise and the exercise has started to drive me crazy as it just means I'm alone with my thoughts and I often end up finding myself even more depressed.

Lady Organic - My direct manager has been great about it. He's a really nice guy, unfortunately lots of other people in my office are not. I know there are laws to protect us but I feel like many employers don't respect the law and just do whatever they can get away with. I know I wish I could accept this disease as it would probably help me to handle it all better, but I just can't, I don't want to be a person with a chronic illness - I want to be normal. That's all I've ever wanted really. The thing about anti-depressants is that I just feel like I don't need them. I feel like I don't have a chemical imbalance. I feel like I am depressed because of a specific thing - Crohn's disease. If this problem went away, I wouldn't be depressed. I feel like this is why anti-depressants haven't really helped me. I know they can help with chemical imbalances, but they don't help my Crohn's. They don't cure me. I know my mood is usually pretty great when I'm not flaring and my health is good, but as soon as my health gets worse I start becoming severely depressed and more suicidal. When I was younger it wasn't as bad, but I'm just so fed up at this point and tired of fighting and now with my digestive issues persisting even after gallbladder removal, I feel even worse than I did before.

 

[Jo-mom]

PinkThink - I am so sorry you are struggling and feeling this way. Please hang in there. Surely there will be a day where your crohn's will be under control and you will feel better physically and mentally. You mentioned you are still young - so please don't give up the fight. There are many people who have struggled for a long time and find the light. There must be medications/diet that you haven't tried that can help your crohn's. Big hugs.

 

[cmack]

Hi everyone, thank you for all of the kind replies and useful advice. I had my gallbladder out about 8 days ago now and I have to admit the surgery wiped me out more than I thought it would. I still have some trouble getting out of bed and sitting up right plus still having lots of digestive issues so I'm not totally happy with the results. I have a follow up appointment with the surgeon but I'm feeling a little defeated as I was expecting to be "normal" again - or at least just have the Crohn's and nothing more to worry about but I guess life is never that kind.

Jo-mom - thank you for the support, my job is actually not looking that great at the moment as a big project my group was working on is now being cancelled so it may not just be me that's out of work unfortunately.

cmack - Thank you for the words of encouragement. I'm also very much into home improvement projects. I once absolutely loved putting a fresh coat of paint on the wall/re-finishing a cabinet/installing floating shelves, unfortunately I've become so depressed lately that I often can muster the energy to do any of it anymore. I just feel to exhausted/fed up and typically just end up sleeping when I get home or forcing myself to go for a run, which I don't really enjoy anymore either and I do more so for the health benefits.

paddywack - I believe I do qualify for FMLA, unfortunately that would mean unpaid time off and I really can't afford to do that. I don't want to outright give my age out, but I'm a very young widow (Like unusually young) so using FMLA would mean I'd have to deplete my savings a little which I'm trying to avoid.
I sometimes think I should be proud - but other times I still feel like a total failure. While I know that many people with Crohn's can't work and I know all too well how hard the illness is to deal with on a daily basis, I still feel like I've fallen short of my true potential. I can't help but feel like I could have been more if not for my Crohn's and I think my family feels this way too unfortunately. I do try to cheer myself up from time to time, but I rarely find enjoyment in anything anymore. I'm more often than not completely apathetic towards almost everything - even when I had my surgery they tried to get me to sign something asking if I required a blood transfusion if they could perform one to save my life, I declined to sign simply because I thought slipping away while under anesthesia wouldn't be such a bad way to go and I was somewhat disappointed to wake up.
I'm sorry you deal with depression as I can empathize all to well - I've been diagnosed with severe depression on several occasions, but I don't really feel like I am truly depressed. I was diagnosed with Crohn's as a child and I feel like I'm just miserable that I have an illness and not really depressed just because. I was forced to go to therapy when I was younger but that had more to do with other issues and I didn't really find it very helpful at the time. Prior to going I thought it was going to be beneficial, but I know when I was actually there, sitting across from the therapist I mostly cracked jokes and deflected. She seemed to like me as a patient and after only a month or two didn't think I was very depressed really and sent me on my way. I was okay with this despite the fact that I was still horribly depressed at the time.
It's good that you have a supportive family, believe me, having someone in the world that cares if you are dead/alive is much better than not. Even if they can't fully understand what it's like for people like us, if they show any concern/inquisition at all it's always reassuring. I know how that feels as I had that with my husband. He could never fully comprehend/understand the exhaustion, but the fact that he tried meant the world to me.
That's good that you have such a healthy attitude towards this terrible thing, but despite all the tests/exams/accidents I still feel so terribly ashamed about it. I wish I could find the strength to not feel like this but I can't seem to do so and considering I've had it for so long, I probably never will.

AdamShoberg - I used to enjoy distracting myself, but these days, I mostly feel like I'm just distracting myself, sitting around, and waiting to die. I can't help but think whenever I'm doing almost anything but sleeping or playing with my cats that it's just such a waste of time and I'm just ticking away the minutes until my life is over and I don't have to deal with any of it anymore. I mean, I used to enjoy games, TV series, reading... but since my husband's death I haven't really partaken in any hobbies at all. I mostly just sleep and exercise and the exercise has started to drive me crazy as it just means I'm alone with my thoughts and I often end up finding myself even more depressed.

Lady Organic - My direct manager has been great about it. He's a really nice guy, unfortunately lots of other people in my office are not. I know there are laws to protect us but I feel like many employers don't respect the law and just do whatever they can get away with. I know I wish I could accept this disease as it would probably help me to handle it all better, but I just can't, I don't want to be a person with a chronic illness - I want to be normal. That's all I've ever wanted really. The thing about anti-depressants is that I just feel like I don't need them. I feel like I don't have a chemical imbalance. I feel like I am depressed because of a specific thing - Crohn's disease. If this problem went away, I wouldn't be depressed. I feel like this is why anti-depressants haven't really helped me. I know they can help with chemical imbalances, but they don't help my Crohn's. They don't cure me. I know my mood is usually pretty great when I'm not flaring and my health is good, but as soon as my health gets worse I start becoming severely depressed and more suicidal. When I was younger it wasn't as bad, but I'm just so fed up at this point and tired of fighting and now with my digestive issues persisting even after gallbladder removal, I feel even worse than I did before.

Hi Pink,

You have been through a really terrible storm in the middle of life. They way I look at life, is that there are certain ugly parts we have no control over. I try very hard not to let it resonate with me. I'm so sorry to hear that you feel like you do. What my experience has been tells me that things can only get so bad before they get better. It just happened again today. I won't go into specifics... but life seems to sort a lot out on it's own. I hope you feel better soon. Come here to talk any time.

All the best.

 

[paddywack]

paddywack - I believe I do qualify for FMLA, unfortunately that would mean unpaid time off and I really can't afford to do that. I don't want to outright give my age out, but I'm a very young widow (Like unusually young) so using FMLA would mean I'd have to deplete my savings a little which I'm trying to avoid.

FMLA doesn't have to be a continuous 12 weeks away from work. I use it on an as-needed basis, and I'm able to use vacation or sick time to cover it (as long as I have the time accrued). Anyway, it sounds like work might be out of your hands for now. But if it comes down to possibly being let go for attendance, FMLA is a protection.

And it's a personal decision. If you choose not to and your employer doesn't push the issue, so be it.

I sometimes think I should be proud - but other times I still feel like a total failure.

I still feel like I've fallen short of my true potential.

I rarely find enjoyment in anything anymore. I'm more often than not completely apathetic towards almost everything -

I'm sorry you deal with depression as I can empathize all to well - I've been diagnosed with severe depression on several occasions, but I don't really feel like I am truly depressed. I was diagnosed with Crohn's as a child and I feel like I'm just miserable that I have an illness and not really depressed just because. I was forced to go to therapy when I was younger but that had more to do with other issues and I didn't really find it very helpful at the time. Prior to going I thought it was going to be beneficial, but I know when I was actually there, sitting across from the therapist I mostly cracked jokes and deflected. She seemed to like me as a patient and after only a month or two didn't think I was very depressed really and sent me on my way. I was okay with this despite the fact that I was still horribly depressed at the time.
It's good that you have a supportive family, believe me, having someone in the world that cares if you are dead/alive is much better than not. Even if they can't fully understand what it's like for people like us, if they show any concern/inquisition at all it's always reassuring. I know how that feels as I had that with my husband. He could never fully comprehend/understand the exhaustion, but the fact that he tried meant the world to me.
That's good that you have such a healthy attitude towards this terrible thing, but despite all the tests/exams/accidents I still feel so terribly ashamed about it. I wish I could find the strength to not feel like this but I can't seem to do so and considering I've had it for so long, I probably never will.

What you're feeling is not unusual. It can be exhausting physically, but especially emotionally to keep going when things are lousy.

Did you lose your spouse recently? You don't need to share details and I don't mean to pry, but it sounds like you've got grief and loneliness on your plate plus the chronic illness.

The thing is, when the depression is bad, I feel similar to what you've described. SO tired, and I don't want to hurt myself or anyone else, but it would be such a relief to sleep and not have to keep at it.

The thing is, and I have to remind myself over and over, is that when the episode passes, and I can see and think clearly again, I'm glad I stuck with it.

The feelings (or numbness) are real, and intense, and sometimes the only thing you can see at the moment. But it does change for the better.

 

[cmack]

I agree with Paddy. Hang in there, Pink. We care about each other here, and that includes you.

 

[CrohnsChicago]

@PinkThink - I hope you are recovering well from your gallbladder surgery.

Also, I know therapy may not be an option for you, but have you looked at your local Crohn's-Colitis Foundations to see if any support group meetings exist? They are typically held monthly and should be free to attend. When I was at my worst I attended a few and it was a relief to see others in real life who were going through similar struggles and could relate to my experiences with IBD. Just wanted to put that option out there in case you haven't looked into it yet.

Hang in there, I hope sharing your story and your feelings here is helping you recognize that you are definitely not alone. Keep fighting the good fight and I will send out vibes to the universe hoping they bring better health and brighter days in your future

CrohnsChicago - I'm sad that there are other people out there who don't receive family support. I thought I was practically the only one as I've known people over the course of my life with diabetes and even MS whose families always seemed amazing with helping them out and taking their complaints with regards to things they couldn't do due to symptoms seriously. I always wished and dreamed my family was like this. As far as challenging relationships - I was fortunate in this regard with my husband, but lost friendships, yes, absolutely. I wish therapy was an option for me (It's far too expensive and my insurance doesn't cover it all) as it's been extremely difficult, but maybe I can save some so that I can go to a few sessions as I think it would be helpful.

 

[aypues]

Did you try wellbutrin? It is not sedating and works great, for me anyway. Some weak data showing it can help IBD too.
I would seek out another opinion with an IBD specialist (not just a GI generalist). I’m not sure what area you’re in but US News just released their top GI hospitals and GI surgery ratings:
https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgeryAlso, I can’t believe your parents. Shocking. Reminds me of how some parents of lgbt kids disown them or shame them (like it’s a choice or something). Just ridiculous that they wouldn’t support you (openly) and give you this negative mindset which isn’t helping your life.
I 2nd the CCFA support group suggestion. Very helpful.

 

[cmack]

Hi Pink,

How are you doing? I hope things have improved for you. Give us a shout!

 

[Moe_is_winning]

Hello all,

This is my first post here and I guess I wanted to post this because I'm feeling really desperate and I really don't know where else to turn. I've had Crohn's since I was a child and I'm now well into adulthood - I feel like it's ruined my life and feel like I might be close to losing my job due to the disease. I would tell my employer but despite having the disease for my whole life I'm too ashamed to do so. I'd rather be destitute than reveal my secret (Which no one outside my immediate family even knowns about).

I don't have really any support and am not too close to my family.

I just feel like life has been a huge let down and life wasn't made to be lived by people like us. I often dream about killing myself on a regular basis. I think about it virtually all day, all the time.

I try to think of viable solutions but I just can't. There's no cure and I have to chose between continuing to fight (Which I'm quite tired of) or letting go. I honestly am at the point where I'd rather let go.

I've never really met anyone else in my life who had Crohn's disease so I don't know if anyone else feels like this, but I definitely feel like I'm at the end of my rope.

You are not the only one. Believe me. I was so down about a month ago before I got admitted into the hospital. I just wanted to go to sleep and not wake up. This disease really was getting the best of me. Had to get admitted into the hospital, miss work, my husband has all four of the kids...he can’t work because he has the kids (one being an autistic 7 year old) and I’m lying in the hospital feeling helpless. But something changed when I finally got discharged. I realized that I was alive. Yes sick, but alive and able to walk out of the hospital. Able to finally eat. Able to see my kids and my husband. Don’t let the bad get you down. You are strong. You have a power deep down inside of you that you have to always listen for. Life is so beautiful. You are beautiful. You just have to look up.

Don’t ever give up on life because it hasn’t given up on you.

 

[Bufford]

I remember those two months in hospital that led up to my colostomy surgery that left me on the bag for life. I was septic with multiple abscesses and fistulas on my rectum and was close to death. Staff had to use the defibrillator to save my life. I felt pretty worthless. I loved summer, camping and canoeing, but I watched summer go by from the hospital window. I felt worthless and destroyed as I was not only sick, but had lost the job I loved a year earlier that left me doing hard physical work that led up to my body breaking down. It was hard enough doing the work I loved while managing my Chrons.
In the hospital bed, I just curled up wanting to die. After the operation I was on the morphine pump, and I would pump it to the max in an effort to take me far away. I wanted nothing more to do with this life, I felt worthless, seeing that bag stuck to my body made it worse.
Upon discharge from hospital I saw the world going on, and I wanted to be part of it. The spark of life was re lit for me and today I recognize the value of life, for it is the greatest gift of all.
We go through some of the darkest valleys during our lives, but if one persists things will get better again. We only get one life to live, and despite it all its worth it to keep on going.

 

[PinkThink]

I finally had my follow up appointment with the surgeon. I'm a little over 3 weeks post op and the pain has subsided substantially but not fully. The surgeon explained to me that it can take up to two months for all symptoms to fully subside but said he believed other than me being unusually swollen in my abdomen, that I should be completely healed after two months. I still have symptoms off and on which isn't ideal, but the pain is finally gone so I'm thankful for that. I still have some stomach cramping as well which I really hate but hopefully that will subside completely as well.

Jo-mom - Thank you for the encouraging words. I'm still hoping to switch to biologic medication. As far as diet goes, I eat extremely healthy. I don't consume red meat at all - only fish, I've cut gluten from my diet as I read that it's hard to digest. I did notice a difference after cutting gluten from my diet (I think I've eaten gluten free for around 3 or 4 years) but it definitely wasn't a miraculous cure, unfortunately. I eat lots of of fruits and vegetables. I know lots of Crohn's sufferers have issues with these foods but they don't seem to make much of a difference for me.

cmack - I'm sorry you have been going through a rough patch as well. I know it seems like things should get better at some point, but that's rarely been the case throughout the course of my life. Typically, things go from bad to worse. I really haven't seen an uptick in my quality of life for over 10 years - my health has declined more and life events have all mostly been tragedies. Nothing really positive. I imagine as I continue to age things will continue on to this point until I die.

paddywack - Thankfully my employer hasn't made much mention of my time off since I had the gallbladder surgery. I guess they thought I was "faking" the whole thing initially, but are more okay with it now that they realize I actually did have a real medical issue. The obnoxious thing about my work acting like this was that I was using allotted PTO and vacation yet they were annoyed with me using the time I was given by the company? If it wasn't okay to use, why give it to me in the first place?

It's actually been a couple years since my husband's death but nothing has really changed since then aside from my health deteriorating more. I'm not really lonely per say, I just don't like the trajectory of where things in my life have gone and I feel I've had zero control over circumventing any of it. I was always taught that you are mostly in control of your own destiny, but now I've come to the realization that you don't control much of anything. You can try your hardest and do everything correctly and still end up with nothing in the end. I still grieve for my husband regularly and just want things to go back to where they were - with my health better and my husband still alive, but since that is not an option all I can think is how great it would be to just be dead - it wouldn't take me back but it sure would prevent the horribleness of the future. I know that you mention being glad you stuck with it after you move on from the rut, but I don't think you understand that my entire life has been a rut, there has been very little happiness or light at the end of the tunnel, things have pretty much gotten worse and worse with time. I've never had this feeling of being glad I stuck with it. I mostly have had regrets that I didn't end things sooner. Ironically a few days before my husband died I was seriously contemplating suicide but my husband strangely enough talked me out of it. My biggest regret was not following through with it that night.

Crohns-Chicago - Thank you for the suggestion. I've actually looked into this and want to go, but it's really hard to find the time between work and doctors appointments. It's a bit of a drive to the location and unfortunately they meet on a week night (Sort of on the late side). I usually work on the earlier side (Like extremely early), but I want to try and find some time to attend.

Moe_is_winning - I'm happy that things improved for you, even if you are not totally well. When my husband was alive, he was one of the key reasons I did not end it simply because of the overwhelming guilt I would feel leaving him alone, now, however, that's not really a concern anymore, one of the reasons I'm not too enthusiastic about continuing on.

aypues - I have not tried wellbutrin, but I have read about how it how it has been shown to be beneficial in some IBD patients. For some reason doctors have never prescribed it to me - they have always given me amitriptyline or trazodone, both of which make me so tired it's pointless to take them.
I wasn't aware there was a difference for GI doctors and IBD specialist, I will need to check into this and see if there are anything on my insurance.
My parents perceptions, I believe, were largely influenced by the fact that they were of the mindset that people born with illnesses were being punished by God. How people could think that in these times is beyond me, but they apparently still exists. I know when I went into remission as a child my mother explained to me that God had cured me and I wasn't ill anymore so I didn't need to worry about it. Needless to say, when I came out of remission I was very disappointed.

Bufford - I'm so sorry you had to go through all this. Ending up with a bag, I won't lie, is probably my biggest fear. I don't know if I could handle continuing on in your situation. You're definitely a stronger person that I am. Your story makes me feel guilty for feeling bad for myself as my Crohn's hasn't gotten this severe yet. I'm glad you found the strength and will to live though all that and I hope you are doing well.

 

[cmack]

Hi PinkThink,

God doesn't punish us. Try to look at the small things in life sometimes it helps. Please don't hurt yourself, there is a way out of this. You have to be here to see it through though. Big hugs. xx My inbox is always open and I love to talk.

 

[Jo-mom]

I agree with cmack. And what your parents instilled in you was so wrong. People who have illnesses of any sort are NOT BEING PUNISHED. I'm so sorry this is what you were brought up with. Please do not hurt yourself and reach out to any of us anytime. Big hug.

 

[Bufford]

Pink, you are far from being alone, misery can be found behind the walls of many homes as many of us face difficulties. Its how we face them that defines us. You have gone through a lot, and some of it is familiar to my life. I was told long ago that I was worthless, and as such I did not deserve the same treatment from my family. My sisters got all the attention and help including a lot of financial support. I on the other hand was constantly criticized and received very little. Nothing but darkness followed my entire life, from my youth until my retirement, I thought about suicide when I was in my 30's, but kept on going.
When I had the operation for the bag I was at an all time low point, even my employer did not want me back. I took on disability and rode it out into retirement. As I healed, life started to open up and the sun shined down on me in such intensity when the dark clouds of a life long depression dissipated. I found the next chapter in this life amazing, I do get setbacks from time to time, but surviving into retirement has opened my life up and made crossing those years of dark valleys well worth it. Never give up, life goes on in beautiful surprising ways when we least expect it.