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Posted 12/28/2008 2:12 PM (GMT 0)

Hello,   I just turned 36, I have had Crohn;s for about 10 years.. I was doing pretty well, Remicade every 6 weeks. Entacort daily.. I usually have about 4 good weeks at a time. Then I get sick about the 5th week through the 6th week. Until the remicade kicks in..  I always considered myself lucky. ( I still have all my body parts).

Then about 2 years ago I got Rhumatoid Arthritis And it runs the same as my Crohn's 4 good weeks unless I do something stupid or repetitive.     The arthritis it hit me HARD, You know when your hands are twisted and disfigured and even just a breeze of air can set off pain the I never thought possible (not limited to my hands by the way, it jumps from one joint to another randomly) it was like the final straw when you have to run to the bathroom up words of 20 time a day sometime. THEN you cant pull down you own pants, or walk to the bathroom because its in you knee or you ankle. It was just that FINAL humiliation..  I have had to try and separate my kids from this. Its not fair to lean on my 16 year old girl so much..

I have been on 1 date in almost 3 years. I am so lonely some time I feel like my heart aches more than any other pain I could ever feel. But I just don't know how to try.. 

 How can I possibly ask someone to want me or love me. When All I have to offer is a few good weeks a month.  I just don't feel like I have the right...   Does anyone else feel this way?  Is it possible to dye from loneliness. Cuz there have been days where I thought it could kill me

...

Posted 12/28/2008 2:31 PM (GMT 0)
Wow things sound like they are pretty rough. Is it possible to die from loneliness? No, but it does nothing good for your health. Do you think it is time to think about that you might want to talk with a therapist. (Just know it might take some time to find one you like.)
Frankly I think it is great you have kids.
Posted 12/28/2008 2:42 PM (GMT 0)
Howecr I am so sorry life is throwing so many lemons your way right now. I agree with MMMNavy that maybe it is time to try to find a therapist. Between the Crohns and RA, life is really not fair for you right now. I developed anxiety related to my Crohns in the past 2 years. It seemed to take control of my emotions and would not let up. I started seeing a therapist and was prescribed Xanax to help with my anxiety. I am now able to stop the anxiety in its tracks, thanks to the help of therapy and medication. I know that we all get sick of taking so many pills, but I think right now would be a good time for you to add a anti-depressant to your arsenal. Many of us suffer with depression because of this darn disease. You are not alone with these feelings. In fact, I am so glad that you came here, we have some of the most wonderful and supportive folks on this board who either feel as you do right now or have been there at one time or other. We also have a wonderful depression or anxiety panic forums also that you might want to visit.

Also, in regards to the Remicade, can't you ask you doc to up the frequency of your Remicade? I know some folks who use Remicade have had to take it a little more frequently to stop the flares. Or maybe its time to try a different biologic like Humira or Enbrel or even maybe Cimzia.

I sure hope you get feeling better soon and we look forward to hearing more from you soon.

God Bless,
Gail *Nanners*
Posted 12/28/2008 2:51 PM (GMT 0)

Yes, I feel that way all the time.  I'm 33 yrs. old, no children and never been married.  I think if I can't deal with this illness how can I expect anyone else to.  I also have bounced around with feeling good and flares.  I haven't had any relief longer then about 4 months in the past 6 years. 

My friend, who is a nurse, thinks that I'm silly for thinking this.  She says that I have so much more to offer then Crohn's and if any guy can't see past that then he's not worth it anyway!  It's nice to hear that from her! :-)    I have seen a therapist and he says the same thing.  It's good to talk out these issues with someone who is on the outside looking in.  They can give you different prespective.

Hang in there!

April

Posted 12/28/2008 4:26 PM (GMT 0)
I feel a little bit like I don't have much right to speak, if at all, because I'm only 20 years old. But I can say that from learning from the experiences of others in my life that the advice many of the members have already given on here is very sound and just. Also, finding a support group in your local area might help mitigate your depression. I can say that without fellow patients to interact and empathize with things would feel much, much worse...
I had a dietitian with RA so bad that her doctors said she may never walk again. A few months after starting humira and she was like a brand new woman. It doesn't work for everyone, but maybe you could give it a try?
I'm really sorry you're feeling this way..I know the despair of it all can be downright unbearable, but things can get better too. I have to believe so and I believe so with you. You'll be in my thoughts..
Posted 12/28/2008 5:11 PM (GMT 0)
Hi I think as mentioned above that another med or upping your dosage might help. I too have had to depend on my teen at the age of 15 to help with getting wood in and the housework while I recuperated from surgery the last two years were rough. But this year has been better and I am more independent except for getting in a lot of wood at one times the winters here in Canada are cold at times. Getting yourself in better health would make a difference in your thinking I know from expercience it can seem self defeating at times.Have you been to a body therapist I had a frozen shoulder once and had to see one and she gave me exercises that helped alot.Hang in there and let us know how things are going I am hoping that things will improve but sometimes we got to get after our Dr's more to give better help. lol gail
Posted 12/28/2008 5:13 PM (GMT 0)
Oh just a thought here but was wandering if you are on calcium and vitamin K and other viamins such as B-12 ? I was reading today that vitamin K is supposed to help with AR. lol gali
Posted 12/28/2008 5:25 PM (GMT 0)

This is howecr,  Thank you all for your replys.  and sooo fast wow.

I am seing a theripist, assigned by my insurance, No I guess he is a shrink. you know I went into his office fill out a bunch of questionairs, then a woman (dont know her position) came in and asked me a bunch of questions about my answers. Then the DOCTOR came in with 2 scripts already written Busprone and Ambian. and told me I needed to get a job...   I was floored! I have been figing with Disibility for 2 years turned down twice. waiting on a hearing,  I tried to explain that yes I would love to have a job. (something to look forward too) but keeping anykind of job full or part time. who what to hire someone who can work MAYBE 4 weeks at a time..  It makes me sooo ANGRY I have to fight to the point where I am an inch away from loosing my home. while the idiot across the street get paid disibility every month because he has Agult ADD and can play well with others..   Sorry I digress  who nother thread there LOL..  My insurance wont pay for an actual theripist.  I guess thats how I ened up here.  I was looking for somewhere to go and talk to people in person. I have gotten all but agoraphobic. Sometime I have panic attacks just at the thought of leaving the house..  and it scares me to death, Because if there is a man out there willing to see ME not my illnesses how am I going to find him.     I just want to go to bed somenight and have someone hold me all night, kiss the tip of my nose and tell me Im beautiful evenwhen I first wake up...  WoW I read to many romance novels LOL       THANK YOU ALL for letting me vent

Posted 12/28/2008 6:54 PM (GMT 0)
Honey, I can only imagine your loneliness. I'm married, so I don't have that kind of problem. Although I still feel lonely
even when surrounded by people. I think that comes from our diseases.
I would just like to suggest, that you find different reading material, you really are rubbing salt into an open wound, and books,
just are not like real life, unfortunately....
Do you belong to any support groups for either of your diseases. Sometimes love can be found in these sort of surroundings.
Only a thought!! (((hugs)))
Posted 12/28/2008 7:07 PM (GMT 0)
Vicky,,  You are right about the books..  I did recently change my reading habits..

Vampires. warewolves. Stephen king type stuff...

It helps vent some fustration  hehehe....

Posted 12/28/2008 7:18 PM (GMT 0)
Aww ((((((HUGS howecr)))))) Love yourself and enjoy yourself, you don't have to have someone in your life in order to make your life count and I know that you feel lonely but love and enjoy yourself and you will feel less and less lonely and remember there are pros and cons to being alone and being with someone as well, the grass isn't always greener on the other side but single people can have just as full-filling lives as couples and sometimes even more full-filling lives...and don't worry, the right person will come at the right time, it's like they say, a watched pot never boils.

:)
Posted 12/28/2008 10:39 PM (GMT 0)
I understand what you're saying about feeling like you wouldn't want someone else to have to deal with your illness. I literally have a few good days a month and as a result I don't feel able to go out very much and am tired a LOT and just have to be alone. I was married but we divorced, partly because I felt guilty for depriving my partner of a decent life...I don't feel very amorous when I'm sick and in pain all of the time. It does feel like maybe I will have to live the rest of my life alone. It's a burden having multiple diseases and I don't think I'm well enough to take care of anyone else's needs, let alone my own.
Posted 12/29/2008 12:28 AM (GMT 0)
Let me just say, You have come to the right place. Feel free to vent away. I think that we all feel lonely, even those of us in relationships, just by the nature of our illness. There are times when we feel that no one else understands what we go through and that we pull into ourselves. But you have made some serious progress. You are seeing a therapist, seeking out help here and changing your reading habits. All steps in the right directions. First of all, realize that it might take a few tries to find the right fit to find a therapist who is the one for you. So please don't give up on that front. As stated in another post, the romance novels are probably rubbing salt in an open wound, so that is a positive step. And coming here to vent, is also a good step, we have all had our bad days, weeks, years, and even decades.

I am married and have been for what seems like an eternity, so looking for a partner isn't really something I have a lot of recent experience with, but I do have two daughters who have been looking for dates, sometimes with luck and sometimes not so much. So I have given my opinion, I am a mother after all, and watched from the sidelines. I've seen what they have gone through. They seem to have the most luck when they are just looking to participate in life, and not necessarily looking for a partner. Things like joining bookclubs, or volunteer efforts offer lots of opportunities to meet people and through them more people. My older daughter has joined dating websites, but also sites that organize activities for singles. Try taking your book to the local coffee shop to read instead of reading at home, or a local park if you live in a nice climate. Help out in a soup kitchen, or some other type of volunteer activity. Take a night course on a subject that interests you and find a cute person to sit next to.

But most of all remember that you won't always be sick. That is the nature of Crohn's. You will have times when you will be sick, like now. And then periods of time when you will be in remission, or close to it. Any person worth your time, will love you during your sick times as well as during your healthy times. So please don't feel that it isn't "fair" to the other person. I'm sure you wouldn't feel that way about some you you love, would you?
Posted 12/29/2008 1:07 AM (GMT 0)
Used to feel the same way, took awhile to find out it is the wrong way to look at life. We are here to help and take care of others, not to feel sorry for ourselves. There are people out there that have it much worse, even though we poop constantly and randomly we are still very lucky to live where we do at this time in history. It is really hard to change your thinking but much of what we go through each day is in our mind. The anxiety, the embarrassment, the feeling of needing someone, so many things.
Posted 12/29/2008 12:14 PM (GMT 0)
Hi How are you doing today ?lol gail
Posted 12/29/2008 3:55 PM (GMT 0)
I have the Hot chocolate cup of life relationships analogy. Life is that cup of hot chocolate. Wonderful. great. all by itself. But if you add that whipped creme, it makes it oh so special. However, if that creme is bad, it makes the whole cup of chocolate bad.

I too know what it is like to be lonely. Didn't find my DH until my 30's. I had given up, but wanted life with meaning and was seriously thinking about life as a nun (a la Mother Teresa...a working nun), but during work I found him. I guess "Life happens when your busy making other plans" really held true for me.

I just hope by being able to come here, you might be a tad less lonely. It has helped me (as my disease has progressed). I am so glad that everyone is here....My disease has tried to isolate me...but here, I don't feel so alone...
Posted 12/29/2008 7:11 PM (GMT 0)

Hello everyone,

I just want to say thank you ALL...

I was having a pretty bad day yesterday. My kids were gone over Christmas so I spent the holidays here at home alone...    I have read EVERYTHING all of you wrote and for what ever reason ( I wont question) I feel much better..     I know I am lucky I have not had a MAJOR Flair in a very long time.. Mostly I just feel like I have a bad case of the flu most of the time.. ( I can live with that).

I would love to find a support group with real people. But I live in a tiny town in Iowa. I have not been able to find one very close...         I will keep this site up so maybe someday I can help someone get though a night. Like you guys did me...

THANK YOU

Chantal

Posted 12/29/2008 7:58 PM (GMT 0)
Yup, this is a great site to bookmark and visit in, I have found a lot of comfort comming here for the last 5 yrs, it's been very therapuetic for me especially when I was going through severe depression and anxiety cuz of this stupid disease....I live in a small town in Canada and even when I lived in the city it would have been hard to physically go to support groups and as nice as it is to get support in person the web is certainly a good alternative.

Take care and visit as often as you need to :)
Posted 12/30/2008 9:41 PM (GMT 0)
I have a similar situation as howecr. I am a 36 year old female . i have had crohns for a little over 4 years. I am on my 2nd try for disability as well,but i just started it in october. it is very frustrating, and makes you very angry how they treat you. they have no idea what we deal with everyday. On August 24 of this year i had a major flare-up at work, and fell to my knees in pain and had to crawl to the bed. needless to say i missed time off of work and they let me go in september. I had a Ct scan that showed 3 pockets of inflammation on the left side of my colon just below your abdomen. i had major pain there everyday. they started with antibiotics, then prednisone,but nothing was working, still had pain everyday. then i got a colonoscopy that showed a stricture blockage in my colon,which he fixed while he was in there, but still having the pain afterwards. so i was in pain for months, stuck at home, couldnt figure out what was wrong. the day after thanksgiving i ended up in the emergency room . my abdomen had swollen on that left side so bad that i couldnt even barely move.......that really sucked.  i ended up in the hospital for 5 days. they did many ct scans, pumped me full of drugs and i ended up with the abdominal pump catheter draining what was discovered as multiple abscesses with a fistula . they started me on remicade also. i have had to remicade treatments so far. after the first one i had knee pain, and back pain after the 2nd one, but i will continue. they finally gave me some decent pain killers. anyhow, i still am wearing this horrible catheter, because nothing is healing or closing the fistula, and the one abscess filled back up after they took out the catheter and put it into the other abscess. this is so frustrating, and i can understand the frustration of thinking noone will hire you. i have no insurance, and no way to support myself. my mother is helping me out, but i dont know what i will do if i get better. its been over 4 months since the flare-up started, and i am not getting better. i am lonely to, and who wants to hang out with me when i am not happy and have a gross bag hanging off of me. has anyone else out there had these bags on...please share your experiences about abscesses/fistulas and trying to get disability. thanks for hearing me out. 
Posted 12/30/2008 10:16 PM (GMT 0)
Hi Lostsoul,
It is so Ironic that stress is such a huge trigger for us. and not only do we have to fight (with energy we DONT have) to get approved for disibility. but while we wait to get the money WE paid in over the years. IT causes us so much Stress that it makes life that much harder...

I dont know if this applys to you. BUT I even get to feeling guilty about wanting disibility.. You know On the good days they are sooo good you can forget how bad it is.. Like I said i can have 3-4 good weeks in a row so I feel like i should be working.. Then my family reminds me. if I was working the stress may take away the good weeks I do have..
becides WHO is going to hire someone. who has to admit they are sick every 5th week.. But somehow I still feel like i am taking advantage... (is that wierd)
My mother is also helping me, she is making my house payments.. She has run her savings Dry and I heard her telling someone she might have to take bankruptsy... If they would just approve my disibility then they will have to pay me all the way back to when I first applied. Then I could pay my mom back...

It just makes me sick that they will approve people for ADD & bipolor ect... things that can be completely controled with meds. the paitents just dont want to take them.. and here we are. already lost more that anyone con know. Dignity, humility, independance. and then they have to screw around so we have to loose our homes also..

Yes Im bitter.. can you tell.. oh and I cant spell very well sorry

and the lonly part. how do you agree to a date when the first question is, where do you work.... Ohh nowhere and I have no income.. yhea he going to call back.
Posted 12/31/2008 12:13 AM (GMT 0)
Hi I agree with you both money difficulties are a hard thing to contend with when one already has a mountain to get over. I know the frustrations of trying to get some help threw disability and having someone else that doesn't even know you make decisions about your life pretty scarry to say the least. Howecr I am glad that we are helping you some.lol gail

Hi lostsoul36 welcome to Healing Well I had abscess in my abdomin and had open surgery so did not have the drain machine. I had one small fistula after my abcess and was on Rem. for 6 months and it closed but I also yook B-12 which seemed to help. lol gail
Posted 12/31/2008 5:09 PM (GMT 0)
Hello...thanks for the quick reply. i definately needed to find people who can relate. i dont have a support group near where i live, so i will take any help i can get. yes i to feel guilty all the time about wanting/needing disability, and it makes you feel worthless and small.For some reason, i just keep crying all the time and i feel guilty about my mom having to take care of me. she is 60 and working as a cashier at walmart. she may have to take money from her IRA if this continues. my medical bills are piling up, and this stupid catheter looks so gross and is so inconvenient(its been in for over a month now, and isnt coming off soon). i finally started seeing a therapist at our local health center. i have had anxiety and depression issues since my teenage years, and this disease made it ten times worse. i am single with no children and as for a personal life, i have all but given up on that. my body is puffy, and the drugs make you tired and give you skin issues. i feel like a troll. i am tired of feeling guilty, but i know there isnt much i can do but hope this flare up will pass soon. i havent had a good nights sleep in over four months and my body is so stiff from not being able to move much.  i hope here on this site i can just vent sometimes and share with those who can understand. i am sure none of us like feeling this scared and helpless and relying on others to get us through the ups and downs. as for the disability people, they should be ashamed of how they have this system running. lets just let people suffer for 2 years while we just sit on our butts and decide for us if we are disabled enough. like you said, who the heck is gonna hire us if we are truthful with them. i dont know how i am gonna make money once these abscesses/fistula goes away.  to everyone on this site, i send out my best wishes and love and hope you have as many healthy days as possible. thanks again for the response.    rolleyes
Posted 12/31/2008 11:13 PM (GMT 0)
I wonder if there's some Internet dating service for people afflicted by the same illness (not necessarily Crohn's, but could be any cronic disabling illness).

I've been thinking that a person could also start their own Crohn's support group with face-to-face meetings. I took a look at meetup.com - they have a "Crohn's disease" listing, but nothing in my geographical area. I suppose that one could start their own group easily enough, assuming you live in a major metropolitan area.

Not sure if that's a useful suggestion - just a thought.

regards to all,
Robert
Posted 1/4/2009 6:20 AM (GMT 0)
hi i live in new zealand and had to have 3 months off work after having part of my bowel removed and some healing problems, i applied for what they call over here a sickness benefit and they offered me $1.50 a week because my partner earns so much working in retail(yeah right!!!). over here i would have got more support if i was a drunk driver and crashed my car causing injury???? how does that work.
in new zealand you are rewarded for stupidity and punished for illness no fault of your own.
i mean really how are you meant to take time off work to recover when all you can focus on is the need to get back to work and pay bills.
Posted 1/4/2009 7:13 AM (GMT 0)
OK OZONEHOLE !!!
I think you have one Heck of an idea! I have been single for 3 years. CAN YOU IMAGINE going on a first date. Not having to wonder how long will is take this one to run like crazy...

Ohh !!!!! and can anyone tell me exactly WHEN your supposed to bring it up.. You know is it first date, 3rd ect.. I feel like if I dont tell the person if im asked out on the second date its kida False advertizing LOL
You know I dont date much at all just cuz I dont know the answer to that question. If you wait to know if you really are interested and like him. Then its like dropping on bomb and it will hurt like hell when they NEVER call you again.
SO WHEN ???????
You know of all the illnesses I think our is the most Humiliating to explain and you ALWAYS have to explain. how often do you hear Ohh I know all about that, Bummer :) and that be the end of it..

ok venting there.. BUT My point was a - Auto-immune dating web site " Choose your Zip code and Disease " sounds awful and tacky.. But It does have a very real appel to it.. I say we should figure it out LOL
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