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Losing Hope


Sun, January 11, 2009 11:54 PM

I've been having a flare up since March of 2007 and nothing seems to be working. I have been on prednisone since then, along with Lialda, and now Imuran. I even tried acupuncture, yoga, the specific carbohydrate diet, supplements etc. Everything I could think of. I'm only 24 years old. I went 2 years after being diagnosed with no probelms whatsoever, just took my asacol and was fine. I just don't understand why the flare won't subside. Last year my entire world fell apart......in a 4 week time span my grandfather who was like my father suddenly passed away, boyfriend of 3 years broke up, roommate moved out, a college friend fell from a waterfall and tragically died, and I started flaring up. I can't seem to understand why this is happening to me. The thing that's the hardest is nobody around here seems to understand how I'm feeling. I know part of it is the drugs that are making me feel so emotional, but I feel so alone. Like I'm never going to meet anyone now that will get me and want to be with me. I have started hiding out in my room not wanting to go out because of being scared of finding a bathroom. I don't want to date because I don't want to stay at their house and something happen. I feel like I'm starting to alienate myself from people. There are no support groups or anything around here either. I broke down today for the first time in a while and couldn't stop crying. I was a Division I college athlete everything in front of me. I was in great shape and now I can barely walk up a set of stairs without panting. I am stuck in a job that I hate because I have to have health insurance. I feel trapped in this cycle. My whole body aches in the mornings and it takes a lot for me to even get myself out of bed. It makes me so sad to feel like the only thing I want is to be a normal young adult. To go out with my friends and have a good time, to take time off to travel the world, etc. Sorry I'm just going on and on but there really isn't anyone to talk to.

FPO rachbr
Joined Sep 10, 2008

Fri, February 20, 2009 5:00 PM

 Reply posted for rachbr.

Hi,

I hope you are feeling better now.  I'm sure your doctor told you this, but it is very importnant that you stop taking Prednisone as soon as possible.  I took Prednisone for a number of years and now have osteopenia, which is the beginning of osteoporosis.  I was diagnosed with osteopenia at around 32 years old.  So, you can get osteoporosis at a young age if you take cortiscosteroids, like Prednisone, for too long.

I really hope your illness goes into remission soon.

FPO dks39
Joined Oct 13, 2008

Fri, January 30, 2009 1:00 AM

 Reply posted for rachbr.

Sorry to hear of the flare and the problems.  I was very heathly active adult and at age 36 I found out I had UC.  It was tough but after several months I am back in gym regularly and happy.

 

I agree with many here that it is stress that causes the flares.  If something stressfull comes up during my day I am going to the bathroom.  I have to make sure I reduce stress through accupuncture and exercise 5-7 hours a week.

 

Good luck and we are all here to support each other.  Be stronger then the disease and beat it back when it comes!

FPO eric1228
Joined Jan 30, 2009

Sun, January 25, 2009 4:15 PM

 Reply posted for rachbr.

Do not lose hope.  I was diagnosed at a very young age and I'm now 51 have two children and a happy life.  I have been though it all.  It's a tough disease, hard to find someone to share your feelings with.  Please do know that you can lead a semi normal life,  stay active, eat right and get emotional support.

FPO duck
Joined Jan 25, 2009

Wed, January 21, 2009 1:36 PM

 Reply posted for rachbr.

omg.... i'm in tears right now.  i feel the same way.  i've had 9 years straight of a flare!!!!!!!!!!!!!!  it's so hard to handle!  i cry so often lately, i also have a hard time finding some one to talk to about it.  i have no insurance at work.  i'm so sick and tired of being sick and tired!!!!!!!!!!!!  i wish there was a way to get past all this pain!  i've recently gone down to one meal a day.  hoping that it will help with the pain.  that is so sad, isn't that an eating disorder?  this really sucks.  contact me any time to talk.  this is so hard,
no where to turn,
kera

FPO kerad
Joined Jan 21, 2009

Tue, January 20, 2009 1:00 AM

 Reply posted for rachbr.

Hi rachbr,  So sorry to hear of your health problems......it stinks doesn't it?  Our son was just diagnosed in October.  It's a very frustrating disease.  Continue to post, there are many nice people who will write.  I'm so sorry you had a streak of bad times all in a row.  But know that there are people who like you are going through a rough patch and you've got to think positive it will get better.  I will put you in my prayers and I will send some hugs your way.....I just did....did you get them ?....LOL.. I hope you feel better SOON !!!!!

FPO worried mom
Joined Nov 23, 2008

Fri, January 16, 2009 12:48 AM

 Reply posted for rachbr.

Your story sounds all too familiar.  I'm newly diagnosed, and still trying to swallow the fact that this is a disease I have, so I'm not too good with encouraging words quite yet.  I just want you to know that I feel exactly the same way- about not having someone to talk to, about fear of being in a relationship, and about wanting to just go out and have fun with friends.  But I keep telling myself, this is something that's a part of me, but I will not let it define me.  There are so many great things about you and people see that. 


I also have a problem with not having a support group in my area.  I live in Blacksburg, VA as a student at Virginia Tech and the closest one is in DC.  My doctor has told me before..."this is a young person's disease" so it's hard to believe they don't have more groups around or near large universities.  But I am confident that more and more people are becoming aware of the disease and becoming familiar with what it is.  Spreading the word goes a long way!  good luck to ya :] 
-kt

FPO kaathrynann
Joined Jan 15, 2009

Tue, January 13, 2009 11:34 PM

 Reply posted for rachbr.

Hi there--seems like you have a few friends on this site that are happy to support you and listen--I have just found this site and it helps to know we all have our good and bad days. The bottom line for me and my Crohn's is that I have made the choice to control my life and that Crohn's is just one thing that I need to manage. I have had symptoms for years , have been misdiagnosed etc...but life can still go on and be meaningful. I don't know if you are on any meds for anxiety/depression. ( I am!) YOur symptoms and isolated behavior are common with depression. I hope you will contact your doctor and discuss ways that he/she might help. Flares are very connected to your state of mind--unless your mind is peaceful, your gut will not be.

Your doctor may also be able to suggest others near you that suffer with
Crohn's/Colitis and perhaps you might start your own support group.
I live far away from any group myself and I am trying to start a group
where I live in Florida.
You are a young gal and have your whole life to live--get out there and
make choices that allow you to deal with your disease while taking
advantage of all that life has to offer..I am single at 61--can you imagine my dating issues!!!!!  I had to stop three times this morning to use the restrooms at a number of fast food places--but I wanted to get to my
new pottery class---so I left early and dealt with the stops--and had a great time in class!! Your disease will control you only if you let it--DON'T LET IT!
with much love
carol

FPO baywindsgal
Joined Mar 11, 2008

Tue, January 13, 2009 5:34 PM

 Reply posted for rachbr.

-also wanted to clarify-I did not lose my baby because I was sick.  He had a heart defect-I just happened to be sick too.

FPO asohn
Joined Dec 22, 2008

Tue, January 13, 2009 5:32 PM

 Reply posted for rachbr.

I am so sorry you are feeling so bad.  You are dealing with so much sadness and loss on top of physically feeling terrible that I know it just doesn't feel like it will ever be okay.   I just got diagnosed myself officially on Christmas eve (merry christmas to me!) with UC.  The anger and frustration easily give way to sadness and hopelessness to.  Simple things that others take for granted are now huge endeavors.

Having said that I read so many people on here that -have jobs, lives, children and continue in the face of pain, setbacks, medications etc.  For me personally I feel this isn't my first flare.  I was sick years ago.  I had had a scary pregnancy and my little guy didn't make it.  I was devestated and so sick.  At the time it was deemed depression and somehow my body went into remission and I did go on to have two wonderful little boys.  I tell you this becasue at the depth of my grief and pain I did not beleive life would be okay again.  But it was.  Now unfortunately I am sick again-but I just CLING on. 

I wish we could all sit in a room (with plenty of bathrooms nearby LOL!) and just cry and vent and laugh together! 

 

 

FPO asohn
Joined Dec 22, 2008

Tue, January 13, 2009 10:20 AM

 Reply posted for rachbr.

Thank you all so much for your wonderful comments and encouragements. I am grateful to have your support during this difficult time and it's nice to know I'm not the only one that feels this way. I definitely agree that the prednisone side effects don't help the situation at all, mentally or physically. It would also be nice to have real support groups in or around my area. I live in Asheville, NC and it seems the closest ones are in Charlotte. Anyone else have a problem with that? At least there is this forum though. I can't say I'm feeling any better....I haven't felt "good" in about a year, but reading all your comments gave me a little more hope than I had the day before.

FPO rachbr
Joined Sep 10, 2008

Tue, January 13, 2009 9:33 AM

 Reply posted for rachbr.

Dear Rachbr,

I understand how you feel.  I have crohns of ileum and was in the hospital in Nov and am still recovering.  It is Jan now.  I dread the prednsione the most.  I wonder if you have tried Imuran and Remicade the next line of help for people who wish to leave the dreaded "P" behind?

I am on my fourth GI Doctor in ten years.  Three have been very nice but all of them pull out the Prednisone first thing and I worry about weight and moon face.  They don't.  Of course none of them have IBD.

I wish they would come out with a different anti-inflammatory to keep us in remission.  I pray someday soon they will figure out how to make us well without the dreaded side effects which I consider as bad as IBD in many ways.  At least coworkers can not see our flares but they all comment on my moon face and weight.  I work with many women and we all watch weight.    

Good luck.  You are NOT alone. 

FPO penwestern
Joined Jan 13, 2009

Tue, January 13, 2009 8:56 AM

 Reply posted for rachbr.

I have my 'up' days and my 'down' days.  It is clear that you are going through a difficult period right now, but you are not the only one.  I can associate with many of your feelings of isolation.  I was a very active person, enjoying my hikes, long drives along the sea coast, walking, yoga, belly dancing.... but with my UC, I 've curbed ( more like stopped ) all the activities for fear of having to use a bathroom and there isn't one around.  But I am from the islands, and the disease isnt very well undersood.  My family doesnt even understand.  It was only at a recent doctor's visit ( my GP, there are not many specialist here, and the few that exist are difficult to even get an appointment ) that my boyfriend came with me and was able to have a better understanding of my 'pains' of dealing with UC.  I was 26 when I was diagnosed - living my life, enjoying parties and liming with friends.  The hard part for me was that my UC was always flared up, I was never in remission.  I've gained 10 pounds being on these meds.  Steroids blew me up.  And I dont like taking meds in general, and with UC, I have to buck up and ensure that I dont miss.

But this year, I joined this support group, and I realised that I am not alone.  And the people on this forum have been quite forthcoming with information, tips, and sharing ideas.  It gave me a ray of hope.  And I wanted to share it with you. I am here if you ever need to chat.  This is not a terminal illness, it's not the end of the world, we just need to adapt, to make a lifestyle change in order to cope with UC or CD.  Smile, you have people that care for you and will help you through

FPO stacy c
Joined Jan 12, 2009

Mon, January 12, 2009 1:00 AM

 Reply posted for rachbr.

You have gone through so much grief plus yourself having to deal with a flare that won't go away.  You also have no one that understands what you are going through.  I think you have gone through more than most in one month, that is a lot to deal with.  I know you are on pred which doesn't help anyway with emotions but thank goodness for this site where you know you are not alone.  My daughter is going through a similar flare like you one that won't go away.  She was fine for 16 months.  It's terribly frustrating.  I hope you know that this is a place that you can always go and know that you are not alone.  Please keep us posted on how you are doing : )

FPO ez
Joined Nov 9, 2008

Mon, January 12, 2009 1:00 AM

 Reply posted for rachbr.

Dear Rachbr, I know how you feel about your flareups. They are awlful to have at anytime of the day. I am on the the same medications that you are on. Prednisone Lialda and Imuran 150 mg of the Imuran. My doctor is going to check my colon next week. I am going to ask him about Remicade. I have taken Remicade before last year in 2008 and Dec 2007. Was taken off the Remicade back in May 2008. My doctor wants me to have surgery and i told him no. The reason for that I want to keep my colon. If everything goes well next Monday for my sigmoidscopy test he might let me go back to Remicade. Ask your doctor about Remicade it may help you to get better. If you need somone to talk to I would be glad to help. kirkbute@yhti.net take care God bless you. From kirkbute

FPO kirkbute
Joined May 3, 2008

Mon, January 12, 2009 1:00 AM

 Reply posted for kimhg.

I will be praying for you!!!  It sounds like you have been going through a lot lately.  I know having an IBD can be very discouraging and stressful, along with all the other things that go on in life.  Don't give up!!!  Even at my lowest point, I was sooooo ready to throw in the towel too, but don't let it beat you...let me know if you need to talk sometime.  I would love to try and encourage you!!!

:)
Joy

FPO joytotheworld
Joined Oct 24, 2008

Mon, January 12, 2009 1:00 AM

 Reply posted for rachbr.

I know exactly how you feel. I was diagnosed with UC (pancolitis) in 2007 and it has been up and down (both physically and emotionally) ever since. I have found that stress will start flares for me (although my doctor disagrees with that). Currently experiencing another flare and I'm back to taking prednisone along with my usual Asacol. I hope that by reading the various posts on here and knowing that people do care that you will not feel so alone. I have found that sometimes the emotional issues are worse than the physical (and I thought that might be due to the prednisone). Please try not to isolate yourself, because I have done that, and it actually makes things worse in the long run. If you ever want to chat, please post back and I can give you my email or IM. Hang in there

FPO jn4025
Joined Nov 22, 2008

Mon, January 12, 2009 12:19 AM

 Reply posted for rachbr.

I am so sorry to hear that you are in so much pain and feeling as you do.  I know the feeling though.  I think most of us have been there at some point.  I have been flaring for quite some time now....over a year and it is tough.  I recently had two procedures for abcesses and hope and pray it is over but wont really know till I go back in and have this tube removed hopefully and another CT scan.  It can be very draining and emotionally it can rip you to shreds.  It is tough for people who do not have CD or UC to understand most of the time.  There are some that do get it and who are willing to stick it out so dont give up on finding someone.  My poor boyfriend has really been through it with me this year and has stuck it out like a trooper.  Alot of people couldnt do that though.  Maybe you should seek out one of the support groups if you arent already going to one.  Also if you dont feel like your' dr is doing all he/she can then go get that 2nd opinion.  You have every right to do that.  I know I went through 2 other dr's before I found the one I have now and he is wonderful.  He specializes in this disease so most of his time is spent on just treating CD and UC and he also does the drug studies in this area so he is always up on the latest and newest treatments.  Anytime I feel like I am alone I just get on here and give myself a reminder that I am not alone at all.  If you ever want to chat/vent feel free to email me at kimhg1227@hotmail.  I will always listen and give that sympathetic ear you need.  You hang in there ok.

FPO kimhg
Joined Mar 21, 2008

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