Can you feel my pain??!!!!!

[JohnnyCrohns]

S.O.S.

I thought that joining a chat group or finding a forum would make things easier for me and honestly it doesn't. Mostly people on here just share updated information on their symptoms which to me seems pointless. The bottom line is that Crohn's Disease sucks...period. There is no cure so searching for answers is similar to a dog chasing their tail. Finding people on here that deal with what I deal with does not make things better for me. As a matter in fact it just makes things worse knowing that there are others suffering like myself and many worse off. Please don't take me the wrong way. I can understand that people find solitude in relating with others. I'm just not one of those people I guess. What's the point. Maybe I've grown bitter over the years. Having this horrendous disease for over twenty years can do that to a person I suppose. So if this letter is depressing for you I'd suggest stopping here because it only gets worse...sorry.

Let me explain where I am and why I have such a negative outlook on life and this disease. Don't worry, I'm not going to get into all of my Crohn's medical history because frankly it's boring and tediously long. Having Crohn's disease for years means that I've literally have tried every drug on the market and I currently see one of the best doctors in the nation. A long term lab rat so to speak. I've a had seven strictures and two major surguries (resections) with NUMEROUS amounts of other problems to go along with it.

All of that information is beside the point though. The main reason I'm writing this is because even with all of you lovely Crohnies out there... I am just so lost, tired and alone. I wasn't always this way. I used to be an optimistic fighter full of positivity and consistently convincing myself that I'm stronger than this. The ugly truth is that one can only fight for so long before they find out they've had enough and are just too tired to throw punches anymore. Let me just break this down in an easier way for you to understand who I was and who I am now.

Who I was:
I used to be a charming (so I've been told), funny, hard working young man with many people I could call friends. Even though I was continuously fighting my illness I always strived for a better life. I was blessed with what I would say above average looks and never have had a hard time finding women interested in me. I was engaged to one girl and married to another for a brief time. Long story but definitely humorous (and sad). Basically you get the gist of this "who I was' segment. All full of optimism and excitement of what was possibly around the next corner.

Who I've come to be:
I recently celebrated my 35th birthday. I'm currently single and last year in October I had my second resection. I've had to quit my career, move out of my apartment in the city, and move in with my sister and nephews. Now my family is urging me to get on disability and to me it's almost as if I've lost my sense of being. A purpose so to speak. All I do is deal with the same shit I've dealt with most of my life but now I've lost my independence completely. Depression is constantly picking at me. I've alienated myself to the world and to people around me. The older I get the harder it is to continue on this bumpy path. The medical field in America is a joke. The cooperate greed here is overwhelming and it seems as though doctors just see patients so they can cover their next family vacation. Pharmaceutical companies are even worse by pumping out drugs at a ridiculous cost that most people don't even benefit from (or afford). That and some that shouldn't even have been passed by the FDA in the first place. Hell, Humira hasn't even been on the market for that long. Not long enough to find the long term effects anyway. (Just an example)
That and I haven't even begun to discuss the relationship end of Crohn's. If you're married with Crohn's I solute you. It must be incredibly easier to have someones genuinely love and be there for you. You definitely don't want to be singe with this disea. Even more so in this shallow world we live in now. I read that a lot of single women think they have it harder due to their symptoms and the whole theory of "women don't poop or fart." lol! Let's be honest here. Most people with Crohn's have trouble gaining wieght. How many men do you know that prefer larger women over that of skinnier women. Please don't judge me as shallow for saying that. Just do me a favor, pick up a magazine, and count how many skinny women there are to bigger women. Unfortunately it's all about the cover of the book in todays world. Not my views but it's the truth. So with that little tid bit let's look at this from a Crohns infected males perspective shall we? Women are no longer looking for love nowadays. They are looking for security. They want a strong, healthy, successful, independent man that can take care of them financially and emotionally. Looks are just a perk for them. They can handle dating/marrying a average looking man as long as there are added bonuses I suppose. Yeah I sound jaded probably. I'm just being realistic though. I've put away all of my love stories and movies now because it's all non fiction. Jane Eyre my ass! lol! Here let me break it down for you real quick.

What men want in women- Faithfulness, Compassion, Honesty, and just basically unconditional love.

What women want in men- All of the above + Humor + Financial Security + Success + Strong + Healthy. (A mans man)

Ok... remember that this is all my opinion based off of my own experiences..... (but I'm gonna be honest) I won't be putting down that I'm a jobless, disabled, broke, unhealthy, underweight single male on Match.com anytime soon. I'm always myself with women but like to gently let them ease into my heavy baggage.

So I guess in closing, with all of that being said..... I feel alone and lost. I'm sick and I'm also sick of having to get back on that horse. I can't drink or eat anything without analyzing. I have been robbed of a normal life. I can't relate to others without this illness. I'm sick of going to doctors appointments with no end in sight. I'm tired of this invisible disease that is slowly killing me from the inside out. As bad as this sounds I sometimes wish I had cancer or something that wasn't so long term. Suffering like this for years can really damper a persons mental and physical health. I used to confide in others hoping that there was an answer for all of this.... but there isn't one. Being sick is unattractive and I sometimes feel like Candys dog in "Of Mice and Men." Decayed and no good. A bother to others. Strange reference I know....

I'm at a point in my life now where now where I don't even care if you respond because let's be honest...... What could you possibly say to make me feel better about everything??

Thank you for taking time to read this and I'm sorry if what I said upsets you. : /

Sincerely, Lost

 

[bobbet]

O I here your pain, I also think that you should retract your apology at the end of your statement "if you upset anyone" you should not have to apologise for the feeling this disease gives you-it is a constant tough struggle. I a sufferer for 11yrs and counting, HERE YOU loud and clear!! Im also extremely lost, tired and alone most of the time, contemplating life, death and the pointlessness of the struggle is something my mind goes through daily at the moment, I think of myself as a strong female but on times that's not enough to pull you through...I hope you find some hope even if it sounds paradoxical in our situation, Bobbet

 

[Jennifer]

Didn't upset me. Completely understandable though. I've have Crohn's for over 20 years and have been cared for many times and been on disability since 1996. That's a long time. I've tried to work and even finished my Masters but there's always something going wrong even if it's not Crohn's related for me so I've struggled to get my foot in the door anywhere.

I actually did get married. Married for love as finances don't really concern me (I've never had any money really so I'm used to living from paycheck to paycheck). Health is a good thing but again, I've never really been healthy so I can handle someone else's health problems I thought. I wasn't wrong but I didn't realize how hard it is. My husband has Complex Regional Pain Syndrome (CRPS) and we didn't know it until after he had a surgery on his foot. Now he can't walk and is constant pain (he has to keep his foot elevated meaning he's laying down all day everyday and I have to do everything, cooking cleaning errands etc). We don't even live in an apartment with wheel chair access. We don't even have a car. He can't work and was denied disability so he gets Cash Aid/General Assistance as all his state disability ran out. Our lives revolve around going to the doctor and the pharmacy and usually those are the only days I get to go outside (he only goes outside to go to the doctor and for family events/holidays like birthdays and Christmas).

He's depressed, I'm depressed, this shit's hard. I'm the breadwinner and I get SSI. I wanted to become a teacher for college level sculpture or ceramics hence why I got my Masters. I honestly don't think that will ever happen. Gotta spend money to make money and we don't have any to spend for us to try and get ahead.

Sounds shitty but why did I share that and why would that make you feel better? Maybe it won't but the fact is I do have my family, my husband, my pets and all the friends I've made over the years. I've made a fair amount of friends on the forum and we talk daily. They may live far away but we text, use Skype and talk on Facebook as well. I've found some peace in the forum by being able to help others. If I can't help myself then maybe I can help someone else so they don't go down the same path or simply be able to offer support and friendship to others who are in a similar situation. It has it's own rewards even if it doesn't change how I live at home. :hug:

 

[SmellyMelly]

I thought that joining a chat group or finding a forum would make things easier for me and honestly it doesn't. Mostly people on here just share updated information on their symptoms which to me seems pointless.

I agree that just sharing updated information on symptoms is fairly pointless (and a bit boring to read over and over again!) BUT the forum helps you stay connected to like-minded souls. I think that is a good point. It helps make you feel less alone.

I don't know anyone in real life who has IBD, nobody at work gives me any compassion, and I often feel isolated as I struggle to cope some days when flaring. So to me, it is great to come here and find other people who can relate to my frustrations and experiences with IBD. It is nice to know I am not alone in the world with this horrible health issue.

The bottom line is that Crohn's Disease sucks...period. There is no cure so searching for answers is similar to a dog chasing their tail.

Well there does not seem to be any professionally "acknowledged" cure at the moment. But I have chatted with loads of people on forums who say they have actually cured their Crohn's, and had it confirmed with a colonoscopy by their gastro or doctor. But then their gastro or doctor completely refuses to accept or acknowledge their healing. So searching for answers yourself is completely different to a dog chasing its tail. Because you may actually find something that helps. But in regards to a pharmaceutical cure who knows what tomorrow, next week, next month or next year will bring - so don't give up on a cure quite just yet.

There are also some useful IBD Facebook pages I am following, and from these FB pages I have learnt heaps about useful treatments for IBD and I have successfully implemented many of them. First found out about Moringa oleifera and the SCD / GAPS diet from FB and these things are positively helping me manage my symptoms and lead a more normal life these days. Whereas once I was so sick I stayed in bed, with no energy to get out, thinking I was at deaths door. That was then. Now I am considering taking up running.

They are looking for security. They want a strong, healthy, successful, independent man that can take care of them financially and emotionally.

Do they? Really? What sort of circles are you moving in to find such weak-willed women. You had better to find yourself a bra burning feminist like me. I can take care of myself financially and emotionally. And I certainly don't need a man for security. I see my husband as a companion on this journey through life. He is not in the least bit "successful" job wise - I earn more than him and have better career prospects. But we don't care about materialistic things like that.

You sound like you have been burnt - we all have - if you kiss enough toads you will eventually find your prince(ess) :ylol:

I won't be putting down that I'm a jobless, disabled, broke, unhealthy, underweight single male on Match.com anytime soon.

Personally I think that is a great idea. That is exactly what you should be putting down. After all most women like a man who is honest and with a sense of humor!

I'm at a point in my life now where now where I don't even care if you respond because let's be honest...... What could you possibly say to make me feel better about everything??

That is true. I honestly could not say anything that will make you feel better right now. Sorry.

You are so far down the rabbit hole anger and depression wise, it is scary.

But since you don't care.....I may as well respond

I suggest sticking around on this forum even if you don't participate. The support here is brilliant.

I suggest taking something to ease the depression. I am the last person on earth to suggest anti-depressants as I think they are terrible, but you may be chronically and life threateningly depressed. And in that case may need pharmaceutical support - see a doctor.

I personally prefer herbal medicine and there are many for depression. The herbs Damiana or Schizandra may be good ones for you, people use them for depression, as an aphrodisiac, balancing emotions and so on. See a herbalist for more information.

I suggest speaking with a psychologist or counselor. Either face-to-face or over the telephone. Maybe once a week.

I suggest finding a local support group for your issues. A bit like AA these sort of support groups usually meet at hospitals or churches or school halls once a month. I use to attend a grief group and found the weekly meditations and support really helpful to help me transition through my feelings of isolation, grief and depression.

I suggest joining some of the Facebook groups for IBD - you never know what potentially useful things you may learn.

I suggest if you can, doing some sort of volunteer work. Either at a local shelter or home based via your computer. Doing good for someone else will help take your mind off your own problems.

Good luck to you and remember (when you are feeling REALLY down) there is always someone somewhere worse off than you. Thinking that normally bucks me up a bit

Hope you find the help you need.

 

[fuzzy butterfly]

Hi Johnny Crohn's, well you probably won't see this as iv just stumbled on your post, or you may not even do the forum any more, but I'll say it anyway. Well young man you've been pretty straight so so will I, yes crohns is a damned shitty deal (pun intended) but really life is too short to give up on it. I felt like slitting my throat at one point I'll be honest I thought I was going to die anyway. but 2 yrs later here I am having a ball. . now I really won't bore you with the details. So here's the tough love bit, if you let it beat you down it will, if you feel your useless, unloveable etc you will be.so please have a change of heart and value yourself again. You sound like a really nice, honest man who any woman should be glad to know and love. Its really not about the body its about the heart of a person. Lecture over!! . Keep fighting as others have said may be a cure any time soon. Here's hoping and wishing you well..