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Hello everyone, I'm new to this site. I'm so impressed that there are so many out there in this crazy world that care about each other the way I've seen displayed here on this site..  Bless you all!!

I have crohn's, I was diagonsed 13 years ago (I'm 33 years old). I've been very blessed not to be dependent on medicine. I'm on Pentasa and have been on and off for years..  But... I feel like I'm crazy or something..  For the past few months now, I've had constant symtoms of a flare up.  but recently I had a colonsocopy and my dr said I'm in remission.. I was shocked.. WHAT?? how could that be?  I have all the systoms of a flare up, but it's not??  It doesn't make sense to me.  If it's not my crohn's, then what's going on?  The dr doesn't seem to know what's going on, and I'm really frustrated..  Now, since the colonsocopy, my hubby has treated me as though I'm imagining it all.. (if that's even possible!)    I just want to scream and run and hide under a rock somewhere!!  I've never felt so all alone and scared.. I don't know what's going on in my own body...  I'm getting extremely depressed over the whole situation..  I can't leave my home cause of the pain and diarrea,  but nothing is wrong??  Is my hubby right, am I crazy??  I don't know anymore!!

I just had to post this in the hope that there is someone out there that can relate and maybe help..  I really need the support since my hubby has stopped supporting me in my disease.. I appreciate any support I can get.  Thank you soo much.. God bless to all of you!!  Christy

 Reply posted for JudyT.

JudyT, can you say anything more about this "cellular" result? I'm very frustrated with one inconclusive test after another ... stool samples, blood tests, fecal fat tests, a colonoscopy, a CT scan and today a small-bowel follow through. Is there a resource somewhere online about this I can look at?

Thanks.

 Reply posted for debdoll.

Hi, im new at this but i been reading eveyones postes and this really helps. My doctors office gave me this website and i am so glade they did cause it really helps to no that your not the only one out there to have the fillling that we are having. I had a babygirl 17months ago when she was about 5 to 6 months old i was diganose with crohn's so its only been about 6 months of me going thew this. But the best thing that is helping me is the support that my husband is giving me with all this. I fill so stress about it all the time cause my husband is so good about it but i fill like i am stressing him out which he want show it cause like i said he is the best person you could ever meet. But i still worry about what i am putting him thew and than i cant play with my daughter like i want to cause i ither stay so tired or just dont fill like doing anything. I dont have anyone that i can talk to besides my husband which i fill gillty cause he has enough to deal with,. He is the only one who is working and bring in the income and it is hard. I had my check up with my doctor yesterday and they are talking about puting me on that humira if the prednisone that i am taking on with the asicole. But the i am really scard of the side effects from the humira? Does anybody have anything good to tell me about the humira? Is a good idea to do it if i have to and do i need to worry about the side effects?

 Reply posted for christye.

You are not alone. I am feeling so frustrated with this disease. It just keeps getting worse and my doctor just keeps putting me on steroids, which are no longer working. Today he told me my last scans show it is getting worse. Big surprise. I am 37 and I used to be a vibrant career woman, now I can barely get out of bed. I am now having new symptoms including horrible lower back pain and I can barely walk up the steps. I am in agony and the fatigue is so bad I have no energy. NONE. My husband and I have spent $50,000 in one year and I HAVE INSURANCE! This is from copays from numerous hospital stays, tests, meds, etc. My doctor said he is going to put me on remicade. I am praying to God that I am going to get better so I can get my life back before we go bankrupt. I feel like I am such a burden to my poor husband and it seems so hopeless. We are going to the Mayo Clinic on Dec. 1 for a consult. I am looking for support, advice or someone else like me who is feeling at the end of the rope. I cannot believe how much my life has changed in the past 3 years that my Crohns has just continued to worsen and worsen. 

 Reply posted for christye.

thank you thank you thank you! i finally am not alone with this. i have crohn's and ankloysing spondylitis.  i was sick for a year before they diagnosed me. my husband at first was great but lately has been not so understanding. i have hidden so much from my family because i feel as if they think i am just trying to get attention. i hesitate going to the doctor anymore because of their lack of caring. meanwhile i am tired, sick, in pain and spend most the day in the bathroom.  i spend hours on the internet researching what is normal and what is not.  i have also taken a huge financial hit. it's difficult paying my bills when i can't put a full days work in. honestly there are days when it's a struggle to be alive. 

 Reply posted for christye.

Hey,

I just wanted to reply because I know what you mean. I was diagnosed in '05 with Crohn's and it seemed to be in remission however since July of this year I have had symptoms. Although all the tests came back negative including a colonoscopy and upper endoscopy. My GI even suggested I seek pyshicatric care. I got a second opinion and explained the pain.

Since my first upper endoscopy was done in August he wanted to repeat that test and he found severe Inflammation in my stomach and esphogus and ulcers. He believes my Crohn's has done something rare and spread from my colon and small bowel to my stomach and esphogus. I have read about it being in the stomach but never the esphpogus. The really bad part is they aren't sure how to treat me and in the meantime I haven't eaten anyhing since July. I am rapidly dropping weight and I had to cut my hair because it began falling out.

Even if a test comes back negative don't give up. It could mean the inflammation is deep under the tissue and they just can't see it yet. Maybe your Crohn's has spread. I know to this day that other doctor still insists it's "in my head' despite the new tests results.

 Reply posted for christye.

You know, it's funny, but this past year I had a hysterectomy for cervical cancer and joined a website for women dealing with that, and your comments really mirror what they were saying.  Sometimes we are unfortunate to be close to people who can't deal with the situation because, in a nutshell, they feel helpless and scared themselves and can't fix the problem--so they insist there IS no problem and/or you must be crazy or making things up or overreacting.  It doesn't make it easier on the people who have the problem though, and just because one or two tests can't prove or disprove anything, it doesn't mean the problem doesn't exist, it just means it hasn't been diagnosed correctly.  As much as I would like to have a real-life doctor available like they do on "House" who can figure out just about anything, it is rare you can find someone with that kind of a knowledge base. It doesn't mean you aren't sick, it just means that you need to continue to take tests and try different treatments until you find what the problem is and what works to address it. 

It is not your fault you have this disease. Adding stress to your already difficult situation by making you feel alone and crazy is wrong and you need to confront your husband about it--and your doctor too, if necessary!  Sometimes you have to verbally rough people up to get heard or get your message across. 

Right now you need someone to listen, to support you, and to work with you to find out what the problem is and to get you as healthy as you can be. If this is going to be a problem for people in your life to lend support, then you need to make a decision about whether or not they should be in your life.  There's no room in this disease for weaklings.  We all are warriors on a day to day basis while we fight this thing. We need people who have our back.  Best of luck, and keep in touch with the people here--they're great support!

 Reply posted for christye.

Hi Christy,

I have Colitis, maybe Crohn's and recently thought I was having a flare up.  I went to the GI and did a stool sample test and sure enough it came back positive for c-diff.  C-diff has the same symptoms as a UC or CD flare up.  If you haven't had a stool sample test, you should get one done ASAP.  I'm on antibiotics (Flagyl) and I'm doing a lot better. 

Good luck!  We all need it with these diseases! 

 Reply posted for christye.

Hey Christye,

  Your definitely not alone on being depressed.  Hang in there, it is hard everyday and the only people who will know and understand that are others who suffer from the disease.  Sorry, to hear about your husband but there is an excellent book I read when I had been already diagnosed with Crohn's but hospitalized for the third time and told I was dieing.  Anyways, it is called The First Year of Crohn's.  I think it would be an excellent and very informative book for you and your husband to read.  Please look into it and together he will start to understand as well as yourself about your disease.  I was told and finally properly diagnosed at 24 and I'm 28 now.  So, I'm still a bit young but in terrible pain everyday.  I can't afford to see my doctors and my family is not really there for me because I think they just don't know how and its too painful for them to cop with it.

Hang in there and God Speed His Love,

Jude

 Reply posted for christye.

Christie i know what your going through ive been on every drug for crohns disease and my body rejects it every time im on the meds however in your case it sounds like your doctor needs to look at you again. Try convincing him to give you an upper endoscopy. It is a small procedure but worth it if it is your small intestines that are flaring up. Dont give up you know your body and you know what is wrong keep fighting and make him understand. As far as your husband goes. Sorry to say but my marriage ended because he didnt believe me either not saying that is what is going to happen but i feel your frustration on that matter. He is your husband he should be backing you up. Most people dont understand what your going through because they dont go through it themselves. Hang in there he will come around but do ask the doctor to check you out again. or you can always get a second opnion from another doctor. Ive seen 4 in the past 3 months and finally at the mayo clinic he saved my life i was that sick and set me up with a doc in my area that has done m ore tests on me then any other doctor ever has before. Keep smiling hun it will get better i promise. ill be thinkin of ya.

TAKE CARE !!!!!

 Reply posted for TheBaz.

 Hi there. I just wanted to respond to christie. I have been diagnosed with Crohn's since 1991. I was fifteen at the time and did not take very good care of myself. At the time, my disease was mild.

I had a couple of flares after having my first child, and noone ever took me seriously if I complained. I have been labeled "Lazy, hypochondriac, drug addicted, moody" etc.. Even though I'm one of the coolest people I know of. But most of my labels have come from the work place, because when I am ill or hospitalized, it burdens my coworkers with temporary extra duties and they resent that. And I have found that if people don't think you look or act sick, then you must be faking it. It sucks.

But keep looking for answers. Have more tests. Seek out second opinions. I just had a blood test done and got a really high result (bad result) that I may also have celiac sprue. It is an intollerance or allergy to all gluten and wheat products. But I have to have a biopsy to diagnose it for sure. My doc says that this might be why I still have pain and issues even when my crohn's isn't flaring. Just because I havent eliminated gluten from my diet, it could make me feel as sick as the crohn's dose. It might be something worth looking into. Anything to feel better ,huh?

 Reply posted for christye.

I'm sure everyone here can relate. You're not crazy at all, and you're husband should understand that it's not an easy disease to live with. I've had Crohn's for almost 6 years myself (i'm 21), and I'm only beginning to realize how much I need my family's and friends' support. It feels good to have someone on your side.

That being said, Crohn's is mainly found in the small intestine. Ask your doctor to try looking into your large intestine, do an endoscopy, CT scan, the works. If he still can't find anything, go to another doctor for a second opinion. You're body is telling you something, you have nothing to lose, but so much to gain :).

 Reply posted for christye.

A colonsocopy cannot visualize the small bowel (except a small section of the terminal illeum).  If there is disease present anywhere in the small bowel, a barium swallow with a 'small bowel follow through' might reveal swollen or narrowed sections. It doesn't sound like he has completely ruled out a Crohn's flare.  You didn't mention if lab work was drawn: CBC, sed rate, C-reactive protien also are used to screen for an inflammatory process.

 Reply posted for christye.

you could be experiencing IBS which can cause pain and a increase in stool output. talk to your dr. about. or you could be lactose intolarant. anyway i have had severe crohns for 11 years and have had 2 surgerys.  I am refractory to all crohns drugs.  it is very imoptant to remain hopeful.  you will get better. tell your husband that everyone who has crohns disease needs emotional support. and you aren't crazy,  crohns can be very dibiltating. good luck, mev

 Reply posted for christye.

So many people don't understnd this unless you have had it yourself or your child has had it. They need to know how important their support is. When you deal with the chrons and then someone not supporting you your only going to get worse. Maybe you need to show him this web site. Sometimes I just think they want this to be in our imagination. One time I was telling my husband how sick my son was and I know he did'nt think he was that bad (he works out of state) until he came home he seen him and went straight for the bedroom so my son would'nt see him cry. We need support and I hope your husband realizes soon..GOOD LUCK

 Reply posted for christye.

I understand, I can relate, and I wish you the best.  I hope you can find support.  I'm so lucky that my husband is very supportive.  That is so important, when I'm feeling so horrible. 

God bless you and I hope you have a good day tomorrow.

 Reply posted for christye.

Oh, yes!  I can relate!  I was diagnosed with CD in 2000.  I am on Pentasa, 6-MP and Remecade.  I go through periods of time when I feel so horrible that I can hardly drag myself out of bed.  My GI doc tested me for lupus and any other thing he could think of.  He did colonoscopies, endoscopy, CT scans, etc. and said "there were no signs of active disease."  The tests did not show inflammation to look at the pictures.  I finally was referred to another dr. and he did a biopsy.  It showed inflammation at the cellular level.  I knew how I felt.  I knew I had inflammation.  Please know that you are not alone.  We know how we feel.  We know we do not feel good, regardless of what the doc says, or what the tests show. 

I also am glad that there are sites like this for folks like us.  It is good to vent, or talk to someone wsho can really understand how you feel!  No one but another IBD sufferer can really know the pain, embarrasment frustration that we feel. 

 Reply posted for christye.

Oh, yes!  I can relate!  I was diagnosed with CD in 2000.  I am on Pentasa, 6-MP and Remecade.  I go through periods of time when I feel so horrible that I can hardly drag myself out of bed.  My GI doc tested me for lupus and any other thing he could think of.  He did colonoscopies, endoscopy, CT scans, etc. and said "there were no signs of active disease."  The tests did not show inflammation to look at the pictures.  I finally was referred to another dr. and he did a biopsy.  It showed inflammation at the cellular level.  I knew how I felt.  I knew I had inflammation.  Please know that you are not alone.  We know how we feel.  We know we do not feel good, regardless of what the doc says, or what the tests show. 

I also am glad that there are sites like this for folks like us.  It is good to vent, or talk to someone wsho can really understand how you feel!  No one but another IBD sufferer can really know the pain, embarrasment frustration that we feel. 

 Reply posted for christye.

you mentioned having a colonoscopy for crohn's...but much of the time crohn's is mainly in the small intestine which is too far to see with a colonoscopy. maybe you should ask your doctor if he'll do an endoscopy, contrast x-rays, or even a pill version of an endoscopy. your colon can be completely fine while still having severe crohn's in the small intestine.

 Reply posted for christye.

Hi, My name is Kawaii and I am 26 years old and was diagnosed with Crohn's 5 years ago.  I have been on every drug you could think of to try and help manage my Crohn's.  I just want you to know that you are NOT alone!!!!!  I was taking Remicade for a couple of years and it was great, then I became pregnant and I had to stop all treatment.  Since I had my twins 13 months ago, I have been in one of the worst active flares to date.  To top it all off, I have had a colonsocopy, a Barium small bowel series, an Upper GI series, and a number of CT scans and they all show that things are good...???   In the mean time I am more tired than ever, my cramps are worst than ever, and my weights continues to drop.  Tell your husband I said IT IS REAL!!  We have so many things on our plate that we just kind of deal with them and not realize what we have to get done.  We don't see the things in our life as stress, but they are.  If I even think about something for too long, good or bad, my pain increases.  I just wanted you to know that I understand