When does this disease end?

Heya gang,

Yeah right, end, haha.

I keep seeing these posts every few days about people who are either in remission or have been in remission for years. I am always happy for them.

The flip side is why can't I get that remission, 12 years now and no breaks, pain 24/7. I am not even going to bother listing the meds, surgeries and preps. I have so many previous posts listing this stuff its insane, and they just mimick most of your posts.

I am often reading about breakthoughs in stem cell research, medical nano technology, US creating a spceial caucus to deal with the growing epidemic. Yet that is all I hear, never a hint of a fix or cure, just articles which seem to vanish as they appeared posing promise only to slowly drift away in the internet wind.

Last couple months I had a esophageal tear, then the meds for the recovery screwed up my insides, now I am trying everything I can just to get back to avg pain.

I hate holidays now, ever since my Father died years back my family fell apart, went their own seperate ways. None of them have even the slightest clue about what I am going through. They know I am sick, but nothing else. I havent seen a family member for over 6 years. 3 brothers, mother, large extended family, neices, nephews all living within the same city as me.

They all say things like, "we have bathrooms here", you could come see us.

And that about sums up what the average person knows about crohns, just like those idiotic crohns tv commericials which show a person lightly touching their intestines and thinking, "Is there a bathroom nearby"

Really, cause if I can knock this disease down to the tv commerical then I guess all any of us have to worry about is making it to the bathroom. OK I'll take that trade for the massive amount of pain and medical/mental nightmares that everyone with this disease suffers.. Where do I sign up for the lesser version of this disease where apparently all you have to worry about is where the bathroom is.

I am not sure whats wrong, I guess this is just another, I am sick, I am ranting and I am depressed and lonley.

The other day I tried talking to my mom on the phone, none of my other family members even return my calls. Everytime I brought up being ill (as she was artfully attempting to manipulate me into showing for christmas) She would change the subject instantly to something ridiculous, like what is on the world wide or local news. I guess she is tired of hearing aobut it or I guess I talk to much about it.

I havent even been able to post here in the last month or so, I read the threads but I havent even been able to muster the ability to type anything.

I suffer with everything I eat, it doesnt matter if its porrige or soup, yes, you can knock out all the things crohnies crossed off their list, soda, coffee, gluten, sugar, anything good, the list goes on.

Right now I am down to some noddles and homemade fruit smooties, things seem to be slowly reducing in pain, but then I lost 20 pounds this last 2 months and am not eating almost anything, so hard to tell, but sometimes I think I have to fast like this in order to give my intestines time to recover from whatever they are going through.

Back to my Holiday thing, I am very sad, this is usualy not a problem for me, but I can't seem to control it, my darkest fear is losing my GF and dying alone in pain, worse her outliving me to watch me die in pain.

I try and lie to her all the time, "I'm fine" "Same ol stuff"., But she knows my facial expressions to well, the heatpads, the drugs, the inability to eat, waking at 3 am holwing like a crazed monkey in the far bathroom from where she sleeps, but she still hears me, she still comes to check.

She works full time, my disease is killing her, she gets no sleep, she worries about me all the time, she spend all her time at the hospital with me or doing things for me, I could not feel like more of a failure as a man then I have the last 12 years if I purposedly tried.

I do not know what I could have possibly done to deserve her, she should have run a long time ago, she could have had a life, children, could have gone out on summer days to enjoy the world, travel, anything she wanted, instead she sits and watches me moaning in pain.

I'm sorry, this is a bummer post, as you can see, I have blessings, I have a roof over my head, food, gf who loves me and a cat who loves me.

Thinking back through time it seems like I get this way everytime this year, I can't leave the house, I have no money for gifts for anyone, disabilty checks dont cover that stuff so ya know, hell Fast Food workers make more then I do, but hey, they actually work.

I don't want to bring anyone down,  I want to get better, but I just can't see an end to this, I only see my self getting older and my body deteriorating from long term meds (pred, example) and age and disease.

I am sure I will pull outta this eventually, just having trouble seeing any kind of future, maybe it is just the holidays reminding me how alone I am, maybe I need to quit whining and be happier for the blessings I do have.

Cathcya guys/gals later

Thanks

Jon

 

Well, I'm no you.. But When I'm feeling bad, pains, depress and everything.. I too, most of the time feel like : '' No, I don't want to go out, see people, and everything.. Just want to stay home and relax''. If I still go, seriously, most of the time (99%) I'll feel better during the time I'm with them. Like Leslie tell, Stress is a huge ennemy, maybe that science haven't explain it yet but it sure have an impact, you're whole body is connected to your brain, never forget that. I know that it most be hard for you to see your GF doing all this, I understand.. I don't have one but, even though I would really like to have one, sometime I'm like : Does I want to enter someone in this world of crohn.. ? Especialy someone you like.. it's hard but at the same time, I wouldn't want to go through all the rest of my life without one. But, hey, she's an adult, and if she doing it, she have her reasons, don't blame yourself with that.
You'll go through it, one day, it'll be better.
Have Faith


Tom

Jon I really think its time for you to go into the docs and discuss your depression. We have an ugly miserable disease, that can just beat us down sometimes.

Between your disease activity and the time of year, life is just seeming like one big problem. Please promise me you will make a appointment with your family doc soon to discuss your depression.

Sending big hugs your way!

Gail*Nanners*

There is absolutely no doubt that this disease can overwhelm us and we all react differently yet at the same time we can also relate to eachother. I've never been in full remission my entire 20 yrs, I've been through depression, anxiety, guilt, hopelessness and anything else negative...and knowing I'll never reach full remission doesn't help. I honestly don't know how I manage to get up everyday just to let this disease have it's way with me, although I'm beeter now in some ways I'm still flaring and it's hard to accept that this is now my life, even harder to accept that it has been for the last 20 yrs.

I take it one day at a time, even though I know everyday is basically the same, besides the fact that I know it could be worse and based on my track record with this disease, it could easily get worse regarding symptoms but I do as much as I can to combat it and have to admit that even with the success of at least being better off now than I have been, it is still really hard living with it day in and day out.

For some sanity I exercise regularly, eat quite healthy (avoiding processed foods/beverages) get a solid sleep through the night, take vitamins, A, B12, C, D and omegas along with other things listed in my sig below.

By no means am I even close to what I was before I became sick and having that taken away from me permanantly really angers and bitters me...I try and stay positive for myself, for the people here at this forum and for my family, it's not easy but I try because I'm hoping that by staying as positive as I can it will be the magic in helping me deal emotionally with this disease...all the above things I do (exercise, sleep) and take (vitatmins) have definitely put me in a better place but I know that I'm not as emotionally/mentally stable as I was before getting sick. I will admit that I was suicidal before I started with the exercise and vitamins so at least I can attribute those things to saving my life but I still hate how this disease has affected me physically, emotionally and mentally.

I wish I had the answers (as I'm sure we all do) as to why life in general is such a struggle on all kinds of levels for most of us, but I don't and it frustrates me to no end.

This disease is painful, restrictive, embarassing and relentless and no matter what difficulties we go through as a result of this disease, we are very strong people even at our lowest point and we all deserve a lot of credit for that if nothing else.

Be true to yourself, dig down deep at your worst and find a way to pull yourself out of the dark and remember, there is always someone, somewhere in the world that is much worse off.

Heya Gang,

as usual good advice

more good news my disability covers all my medical expenses

more good news I do have a psychiatrist, she is great, she hates the medical system to, inside joke there, she is extremley understanding.

I don't want to go off any kind of deep rant here about the human species as a whole....now your like *** is he talking about?

Well, it kinda seems sometimes like we are all supposed to just suck it up, stiff upper lip, take one for the team, be a team player, don't cause trouble, love they neighbor.......now your like, yeah he has lost it.....

What I mean is, everyone wants the best possible scenario for themselves, their loved ones and anyone they know is suffering, such as this forum and its family...

but what if the best possible scenario for the rest of your life were only constant pain and torment, I am not giving up, hardly the case, far from it, I will fight till the end.....

But I want to be able to say "This sucks and I got screwed" and have that be ok as well.....

I am all for sending positive messages and believe that every day, pain or not, is a miracle to see....

I love all the things I never noticed before, trees, the skyline, sunsets and rises, clouds, rain, wind, these things would make more sense if you were a crohns prisoner and your backyard was your only outlet for the lasat 12 years

But I can't help but feel robbed, of my body, my youth and as you have all clearly noticed some sanity....

anyway, all is not "the end is near" , it is merley that I am aware that this sucks and although I would like it not to, it just plain does

Thanks PB4 for giving me your story, I know you know how I feel and vice versa, knowing someone else understands really helped me feel like I wasnt alone today, not that the rest of you arent equally loved...just for some odd reason hearing someone else say "This sucks" helped :)

Later gang

 

many,many,many people have been where you are and have gotten better.

the ((hugs)) are very nice and helpful. But there is real true help for you out there. It's not a quick fix like a "magic pill" but if you are committed to regaining your help I truly beleive you can.

This isn't woo-woo stuff. It's science. Just science that isn't mainstream yet. But fortunately mainstream  "through it's cutting edge" technology is starting to see things through their super computers that others have been saying for years.

I hope things get better for you.

Hi Jon,

It makes me so sad reading your post.. I dont have Crohns, but my husband does and I know how your gf feels. It's hard seeing your loved one suffering..but I know its hard for you to know she's worrying about you. My husband has had CD for the last 18 years and the last 5 years have been bad with the last 2 years being absolutely horrid. He missed pretty much the first year of our babies' life cause he was laying down most of last year. He's tried all the drugs out there, lost 50+ pounds, and quality of life was a 0. His CD got so bad in his rectum with fistulas and had setons bands put in. The surgeon who did that was such a wack job...my husband couldn't sit down for 8 months. Finally, I couldn't stand it anymore and made him go see another surgeon. This surgeon was top notch and redid the seton bands. The surgeon said that he believed that my hubby needed surgery for his CD. My husband said no way! Then his GI said his colon was so diseased and strictures were so bad that she couldnt even get past 15 cm with a pediatric scope.

She straight out asked my husband, "do you enjoy your life?" "do you want to get your life back?" He's only 33 and we've become so accustomed to living a life filled with uncertainty, stress, anxiety, and spending all our time at home. Or if I wanted to do something I had to do it by myself with our daughter.

So, he made a list of pros and cons of having surgery (permanent ileostomy) or continuing different meds. He was on Humira and 6mp at that time. He made up his mind..he was done being sick and always waiting to feel better. He had surgery on 10/31/11. It's been a month and I'm happy to report that he feels fantastic! The first 3 weeks were tough. It was painful and he ended back in the hospital with a partial blockage. But this last week, he says he doesn't remember when he felt this good. Hes so busy running everyday errands he hasn't been able to run in years because he's always worried about where the restroom is. He leisurely strolled through Target and decided to build a pantry cabinet for me in the garage! He sat and ate in a restaurant for the first time in years. His impatient and angry attitude is gone (most of the time :)

Surgery is certainly not for everyone. However, it was the right decision for my husband and during dinner tonight he said that he has not an ounce of regret. But if you hate the way your life is...., maybe it might be an option for you?