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Ok, so I'm a 24 yr old female that was diagnosed with crohn's by a letter sent from the Gastroenterologist last week. I am freaking out at this point and don't know what to do. I am still quite ill, and this doc just called in a rx for prednisone (40mg 1 day) and pentasa (2 pills 4x day)-which was $600! My symptoms have been different than most. I presented one day almost a month ago with the absolute most intense pain right below my xiphoid (upper gastric). I couldn't sit back at all, or lie on my back. I basically laid on my side until I went to the ER. They found a lump between my pancreas and liver and told me it was cancer and to confirm with ct. CT came back and they were like "it;s just a swollen lymphnode no worries you can go home". 7 more days of intense pain/nausea/fever. went to an md and he sent me straight to the er again. Then the ct scan showed several lymphnodes and my ileum was swelling. I had a scope and my terminal illeum looks like a warzone! Since then, I haven't talked to anyone. I just got married and moved to this huge city and don't know anyone. On top of that I didn't have health insurance and feel like the doc doesn't care because I can't pay! I am still sick, taking a medicine I am very scared will mess with my head, and I guess I just don't know what to do. I 'm super depressed. I was a professional ski patroller 3 mo ago, and now my whole life is never going to be the same. Do people get a regular md to follow up with? was a letter the appropriate way for the GI doc to tell me? I have an appt with him in sept! but that means I have to be on the prednisone for over a month! I am so scared and so alone. could use anyone willing to email talk since I can't even find a support group in this town. this is a super long letter, but a cry for help...

 Reply posted for hope2skiagain.

 Reply posted for hope2skiagain.

Hi,

The main thing it to find a GI docter that you like and is squared away.  Do you have healt insurance to pay for medication?.  It sure seems like it took some time to get the Crohns diagnosed.  But now that you did, thats a huge part in being able to get control of it.  I was dianosed with Crohns in 1987, it took almost a year untill they found out what was causing the stabbing pain and the weight loss.  I had big operation, and up untill about 5 years ago I have been in good shape.  I have had multiple operations for fistuals forming,  I was on Remicade for 3 years, and on Imuran for awhile there to.  Now in my situation, the medicaction had stopped working, and I recentley have gotton a Colostomy.  I have not felt this good in years and I'm still in recovery mode. I tried to make this short and to the point.  But every case of Crohns is diferant, although the cronic problems seems like so many of us can big time relate with.  See your GI docter allot, and I know with me,  to get all the testing done.  Its not fun and its tiring obviousley, but everytime you take care of one of these, you are one step closer to feeling better.  Take care

 Reply posted for hope2skiagain.

Sorry to hear you are in so much pain.my husband has Crohn's.than our son who is 27 found out 2 years ago he has it.he has been depressed as well.he isnt really dating anyone think it knowing ,but you will start feeling better soon with medations.keep your head up .stress does make you feel worse.like i tell my son .looks like there is alot of support on here .if you would like to email let me know and we use can .i have lived with this sence 1986 with my husband .if we can help with any Questions let me know if i can help i will..

 Reply posted for hope2skiagain.

As far as the emotional aspect, I definitely know how you feel. Was diagnosed with UC in 2007 and have had multiple flares, along with taking prednisone on and off (40 mg was my highest dose). I also have felt sad, lonely, and very overwhelmed. I've found a support group in my area, but I find these boards very helpful on my bad days since everyone here can relate to a lot of these feelings and symptoms. I'm also experiencing the frustration of having limited health coverage (self employed) and the meds are super expensive for me (my last refill of Asacol was $350.00 for the month). I have previously qualified for free meds directly through the drug manufacturer (Proctor & Gamble) and am in the process of applying for that again. I request samples from my doctor and have told them it is very difficult for me to afford the meds I need to take. Anytime you need a sympathetic ear, please vent on here or shoot me an email at jackie@crashmusicinc.com
Hang in there....things will get better (one day at a time).

 Reply posted for hope2skiagain.

I have Crohn's.

1.  I am experiencing blurry vision.

2.  I am moody.

3.  I am eating like a horse.  (But sweating it off cuz it's so dang hot here)

4.  I was diagnosed in 2007 with Crohns and only 3 months of being pain free. 

5.  Promethesus (sp?) came back negative for me too, but I have GERD, IBS, Crohns and Interstital Cystitis.

hang in there, it will get better.  It will.  ;)

 Reply posted for hope2skiagain.

try to find a support group through ccfa.i have had crohns for 40years and have been up and down.finding people like me with crohns has helped .getting hooked up with ccfa ,good luck and hang in there

 Reply posted for hope2skiagain.

Ok, so things are going a little better. I'm on the awful prednisone-40mgs a day and pentasa and think I might be getting better. Still tired...does that last forever? Unfortunately I've been an insomniac and a mental mess from the prednisone. Now I'm getting really bad eyesight changes and headaches from it so I'll start decreasing tomorrow. I called the Dr's and they put me on a waiting list for an earlier appt than sept because I do have crohn's (thanks for calling me with the blood test results).. Has anyone ever had the promethius come up negative, but the scope and pathology are reason enough for them to diagnose crohn's?
   I guess I think I might need to go to a counselor. I'm still emotionally overwhelmed from this and feel like my husband's recoiling and my mom is way more controlling and bitchy than before. I was thinking about moving to a cabin 30 min up in the mtns and just relax this winter, but is that a setup for disaster? I'm kinda a recluse anyways, but what if i get sick out there all alone? I don't want to be around all these pro skiers anymore doing what I used to be able to do...it's too depressing to stay here!
   Do people usually have more than 1 flair a year? I just don't know what I should consider when trying to make decisions anymore. I feel like I have to make all these huge decisions alone and am so sad and lonely (prednisone?) I don't know. This just all sucks! sorry just needed to vent.

 Reply posted for hope2skiagain.

I agree with Asohn 100% with everything he said. The doctor should not have sent you a letter thats terrible. You need to find a better G.I doctor. I don't have Crohns I have Ulcerative Colitis, i believe the symptoms and pain are pretty much the same, and it's ALL trial and error. I am on prednisone but only 7 1/2mg a day and other medications as well. I started on 60mg in May when I was first diagnosed and its some pretty hard stuff. It def. screws with your head. It put me into a depression for a lil while. But it was also the diease and it turning my life around. I am just starting the somewhat get control of my life. It's going to be a rollercoaster ride for a lil while but once you find the right doctor and the right medication you will get yourself back on track. Just keep in the back of your mind that you will be back to normal. It's not easy and I know that. But you should def. see your doctor before September. He should be having follow up visits with you at least every 2 or 3 weeks. This site will def. help you. It has helped me get through the rough times. We are here for eachother so come and vent to us anytime. Good Luck!

 Reply posted for Amberras.

I'm in a similar boat as SemiColon (love that name!).

I was "unofficially" diagnosed with Crohn's Disease in April 2007.  The quack GI doctor I had refused to acknowledge it until 3 months later and I was put on Entocort and no dairy.  This lasted for 2 years.  I finally, after my GI doctor refusing to both endoscopy and colonoscopy, told my MD that I wanted a new referral.  He knew about my expierences with the quack and gave me a new one.  For two years I researched and researched and suffered in pain. 

I was able to get in to a new GI doctor in March 2009 and he listened to my story, read previous reports and agreed to do another colonoscopy and an endoscopy.  He confirmed the Crohn's Disease and GERD, and informed me I had a hiatal hernia and IBS.  (It took a referral to a urologist to find out I had chronic bladder inflammation.)  On top of this my esophagus spasms. 

I was put on (at my decision because of the side effects) Azathioprine for five weeks.  I found out that 1 in 1,000 suffer from the side effects and I was that 1.  I developed pancreatitis and my liver enzymes shot up to 1700 (60 being normal).  Both conditions were reverseable.  I was in remission from April - July 2009.  Because I had to have surgery on my knee, the only way to heal the knee was to put me on an anti-inflammatory.  My body reacts to any drug in that category.  Hence, I am in flare mode now and on Prednisone for 30 days.  I am gaining weight (but watching what I am shoveling in.  LOL) and my legs, feet, and hands swell at night.  It's working though.  If I didn't do the prednisone, I would have to find a totally natural way of healing (which I am working on all the time) because my GI doctor said that the prednisone was it.  Once that is done, there are no other medications for me.

My best to you, and please keep us posted. 

Can't dealCheck out C U Clinic if you can.  They are located in Utah County, but they have really been incredible with my husband.  Its important to have a good doctor with whom you can discuss questions, and who understands how difficult it is to not have insurance. 

 Reply posted for hope2skiagain.

Your situation sounds similar to mine.  I was diagnosed with a disease that I didn't know much about, moved out on my own shortly thereafter and had a love/hate relationship with my first Gastro doctor.

I remember going to the pharmacy, after being diagnosed, to pick up my prescriptions and it was over $100...for medications that I didn't know anything about.

I started out on Pentasa and Prednisone as well.

Research your condition and your medications.  Educating yourself on what to expect and how meds work will, hopefully, ease your mind a little.

Also remember that medications aren't a cure all.  You have to get enough rest, eat a proper diet and exercise (all tips that I need to improve on).

It can be extremely overwhelming, but take one day at a time.  That's advice I need to adhere to more often.

One of the best therapies, for me, has been talking about my condition.  Unfortunately, there isn't a local support group in my area, but I try to be active in CCFA events (when I can) and share my experiences with others.

Expressing your frustrations on this forum is a great start.  We've been there and we want to help.  Just getting your anger and confusion out of your system may be helpful.

Here's to a better day!

Cheers,

SC

 Reply posted for asohn.

thank you for your reply,

 Reply posted for hope2skiagain.

also on the med front.  Prednisone is the cheaper of the two meds- and although it isn't a long term option- you could start this one and hopefully get some relief,  Unfortunately there are some crappy side effects- but for me I was so desperate to get relief that I could deal with anything else.  You then might get ahold of hte manufacturer of the other med to see if they have any assistance programs- also double check with your dr. if there is a generic option.  

 Reply posted for hope2skiagain.

Okay first of all I want to let you know what you are feeling is a normal reaction that alot of us had (have) since we have been diagnosed.  This will turn your life upside down.  Add to that, you just moved to a new city where you don't really know anybody- yeah you are stressed.  Second-yes I think it is pretty crummy that your Dr sends you a letter.  My goodness -please find a more caring dr. this is hard enough to deal with -unfortunately the dr search is trial and error.  Actually alot of this disease is trial and error, learning what meds work, what diet changes we might need to make , what supplements help us.  We have to be strong mentally and emotionally to get through this.  That isn't to say you won't break down- we all do-somedays i could just cry.