New, scared, and confused

new, scared, and confused

Hello All! I am really new to posting and new to IBD and just need to talk and get advice and maybe some support. 10 days ago, I was 31 and had no medical history and was taking no medications. Today (only 10 days later) I am 32, have crohns, and am taking 12 pills a day. How the hell did that happen??? It's all been such a blur that I really don't know what to make of any of it. Ten years ago I was experiencing some abdominal pain and saw blood in my stool (very small amount) just one time. They did a colonoscopy and told me it looked like I had crohn's. They put me on pentasa for 2 months and said if you don't have any problems then no need to come back. Well I had no problems. I figured the docs were crazy. There was no way that I had crohn's....I had no symptoms. Well I guess I was wrong. Really a part of me feels like I have no right to complain. I mean 1o years with no problems and only minor symptoms at that....so what gives me the right?? But on the other hand, I can't help but complain and feel down. I began having abd pain again some time ago. I can't even remember how long ago because it just seemed like it was my "normal" so I learned to deal with it and ignore it. About 15 days ago though I started having unexplained fevers. My doctor sent me for a CT scan and sure enough there it was same as 10 years earlier: inflammation at the terminal ileum. And my gallbladder looks bad. They believe I was having microperforations so they hospitalized me and worked me up for my gallbladder. I was discharged 2 days later being told you have crohns, get a GI doctor, and one day you will need your gallbladder out. That was alot for me to deal with since here I thought I was having a routine outpatient CT scan...well so much for that. So now I am on pentasa, prendisone, calcium/vit d, and I just finished augmentin. The problem is that now my stomach still hurts same as before AND I can't stay out of the bathroom. WTH! I never had problems like that before. So now they think I have CDIFF. WWWHHHHAAATTTTT!!!!!! I mean how the hell did all this happen in 10 days!?!?!?! I am just at a loss for words.... confused about how I am feeling....and I feel like people around me just don't get it. Hell, I dont even get it. Maybe I should consider myself lucky becasue I haven't had worse symptoms until now. I just don't know anymore. And I am TIRED. I mean always tired....I do a few little things and I need a nap. Aren't steroids supposed to give me energy. I feel like I am dragging all the time and I can't concentrate. I am now on a low residue diet but afraid to eat for fear of spending the day in the bathroom or for eating the wrong thing. Anyhow, I guess I am rambling now. I came across this forum in my attempts to research about crohns and I am hoping to learn something, make new friends, get some advice, and maybe just have someone to listen who won't just say "oh it will be fine just give it a few days and you will be all better" because although I am at a loss I know that phrase it total bullsh@#!

Hiya ataloss
and welcome

Well that's quite a story and we'll all empathize! so how long have you been on Pred, and at what dosage? Things shouldve calmed down by now, D wise, and usually you do have bouts of energy with it. But, augmentin is an antibiotic (penicillin) and one of the side effects is diarrhea!! I've nearly finished a course of penicillin for a skin infection, and have horrendous squits and belly ache!
hopefully once the augmentin is out of your system, things should improve with the Pred.
You're no longer alone with this now, you'll make lots of friends on here, and everyone is helpful, any questions, just fire away, and feel free to vent too!
lotsa luv
Joan xx

I hear you, I had about three years after my diagnosis with relatively few symptoms, no medication. I really didn't think Crohn's was a big deal. All that changed about a year ago and I am still trying to dig my way out. I thought I was coming out of it but for the past month, things have gotten steadily worse. I am just about to post about what to do about going to the bathroom 20 days as this was never really a problem for me until the past couple of weeks. You will learn lots here, people are very supportive and full of information. Maybe it is the antibiotic as Joan suggests and once it is out of your system you will start to feel the full effects of the prednisone. I know it really works for me.

I felt very similar to you recently. Although I was diagnosed in 1988 with Crohn's and was very ill at the time (I was in and out of hospital for 2 years and had a bowel resection), for the past 15 years I have been really well. So well, that I almost forgot i had Crohn's! Most of my friends didn't even know I had it. I'd occassionally get days where I didn't feel great or had cramps and d, but I'd usually just put it down to stress. So I was very surprised (and upset) when what started out as just bad cramps and gastroenteritis has ended up with me in hospital for a month and having another bowel resection in March! I mean, what's going on! I didn't even feel THAT sick. Crohn's is a very weird disease, and my symptoms this time have been very different from last time. My main symptom this time I'd say was tiredness. I've felt so darn tired all the time and just felt pathetic. I feel a bit better knowing there was an actual reason for me feeling so tired! I've been on short courses of steroids over the years, but never anything long term. But since this flare up I've been on infliximab (remicade) and am currently on azathioprine. I'm hoping now they've 'sorted' this flare up out, I'll have another 15 years without symptoms!!

Similar story here too. When Jennifer says Crohn's is a weird disease, I say is it ever!! I was treated with asacol for first flare and was fine for the next 7 years. Then I had a flare about once a year which responded to a course of asacol. Then there was 18 months of not being able to get it under control. That's when I got the Chron's dignosis last October. Still not completely normal yet. I've been having some left-over side effects from the entocort, but today I'm hopeful once those are calmed down, I'm on the mend and have another good period of remission.

Hang in there! It's hard when things keep getting better, worse, better, worse. Talking with people definitely helps and especially folks on this forum as there is great experience and empathy here. And no one seems to mind how much you whine!

Lilly

Hi ataloss,

A "weird disease" is so true, but it's also an understatement. I have Crohn's ileitis like you. I've found that the symptoms can be different for people with CD in the same area, and if you have it somewhere else (Crohn's colitis, or Crohn's "ileocolitis" or wherever), symptoms can be all over the place.

I had been without symptoms for about 7 years. Last June, lets say the "sh_t hit the fan" and this flare started. It hasn't ended yet. I just started on a round of Endocourt last week.

The symptoms of this disease can be foolers. Crohns displays symptoms in a unique way for being a GI disorder. I would have to say first and foremost, it is also an "autoimmune" disorder, and I can't ever let that fact escape me. Automimmune diseases manifest in multiple organs, tissues, areas, etc. Although Crohn's is mostly a digestive disease, the onset usually involves what are called "EIM's" which are "extra-intestinal manifstations". This is where I find Crohn's getting VERY ugly, and confusing.

If I have a problem centered in my gut, then anything that happens in the digestive tract can pretty much be linked to Crohn's. But something weird happens within my mind. I don't immediately associate EIM's with Crohn's because they aren't effecting my gut - they're not even seemingly connected.

The major EIM's I experience on almost a daily basis are joint-related and psychological. I have severe arthritis in my left knee which has drastically gotten worse - Crohn's has sped up joint deterioration. When my digestive flaring becomes worse, within a few days, joint pain starts happening, and not always in a predictable pattern. But it effects my knee, ankles, fingers, toes, and one arm, and across both shoulders.

The other biggie that wipes me out is fatigue. My surgeon explained to me why an autoimmune disease causes fatigue. He said the immune system does two things, it initiates the inflammation wherever it is, then it sends an immune response to combat the inflammation it started. So the immune system is doing "double time" which means it takes energy from other vital places to keep this circular "malfunction" in steady operation. That causes fatigue.

I can easily sleep for 12-15 hours in a stretch, and still be tired. Then I'll have periods of insomnia because I'm too tired. Nearly every day lately, I feel as though I've been run over by a bus ( or "Lorrie" as you Brits might say) and dragged down the street. I get exhausted. I have to constantly remind myself there's nothing wrong with my activity level or with my attitude. This is Crohn's disease, and fatigue is an "EIM" over which I have no control. It's not my fault, and I'm not a bad person because I sleep for 15 hours and miss a day of work.

Almost every day I have anxiety which is usually the result of fatigue, but this is also something that is another Crohn's EIM. There are some days where I will feel clinically depressed. Depression is another EIM of Crohn's disease. I know what clinical depression is because I was treated for 4 years, and not a day went by without depression - that wasn't related to Crohn's at that time. But with the onset of this flare, I will have random days where I feel the same way. So far, when I get Crohn's related depression, it hasn't hung on more than a day. That's how I know it's Crohn's disease. If you've ever been treated for clinical depression that somehow miraculously lifts (like mine did), you recognize depression anytime it returns. So when I wake up depressed, I have to remind myself that I'm not clinically depressed again, I don't have a sour attitude, I'm not feeling sorry for myself by choice. This is Crohn's disease, and depression and anxiety are EIM's over which I have no control. I'm not a bad person, I'm not a depressed person, and I'm not hopeless. I just have Crohn's disease.

Then anyone with Crohn's disease, usualy takes heavy-duty anti-inflammatory medications. These prescriptions have a multitude of side effects. That means not just one, or two side effects. My rheumatologist told me that prednisone has over 20 side effects. I wouldn't get every single side effect, but I would get some - e.g. many more than one bad side effect. Prednisone has been eliminated as an option because too many of it's side effects would aggravate my other non-Crohn's conditions. I can't afford to gain weight, I can't afford any additional joint swelling, and I can't afford any further weakening of any of my joints.

I take Endocort which is supposedly the "lightweight" side-effect steroid. Not. A steroid is a steroid is a steroid. Just because it is 90% "localized" which means it reduces inflammation in specific targeted areas like my ileum, there is still 10% left over which affects other systems. That means it will have steroid side effects similar to prednesone. Endocort makes me sleepy and depressed and irritable - it effects my moods.

Steroids used in supposotory form, or in nasal form also have nasty side-effects If I take a targeted steroid inhaler for COPD for example, it should help a great deal with the condition. But I will also experience steroid side effects which could include swelling in other joints, or weight gain.

In other words, steroids are heavy-duty medications that produce no happiness or wonderful feelings of joy or euphoria. They're nasty drugs with loads of undesirable side-effects, some of which make people sick in other areas. Antibiotics are about the same. They aren't prescribed for fun and happiness, and rarely will fun and happiness be the result. These things are prescribed because we have a serious autoimmune disease that will cause disabling symptoms without treatment.

I have a team of physicians, and they're all in agreement about one of the OTC meds I take. Baby asprin. Every doctor on my team KNOWS that asprin in any dose or form will aggravate a Crohn's flare. My GI took a stand like this. He said "I'd rather you have aggravated Crohn's than for you to die with a stroke." So I have to keep taking my baby asprin with full knowledge that it is no doubt making my flare worse. It's better than being dead.

One thing that came about was that I discovered I have a genius of a Neurologist. He reveiwed all my medications and vitamins/supplements. Of course he recognized the baby asprin issue first thing, but also accepted the rationale. But what advantage he had over the other doctors is that he understands depression and anxiety AND he knows medications like the back of his hand. He gave a couple changes in the specific time and hour that I take my medications so that I could "gain" from particular "side-effects" of each medication. One medicine I used to take at night wards off migraines effectively. But it also has efficacy in helping reduce anxiety, although not prescribed for anxiety. So he said to take it in the morning instead and I would get the maximum benefit of the drug given my conditions.

Sorry to go on forever, but I understand how difficult your new-found condition has been. You have Crohn's disease which causes anxiety (fear) and confusion. You can't give it back - you can't get rid of it. It's a done deal forever. You have limitations that may or may not get easier. But there's a good chance you will get some time in remission, which means your symptoms might go away or become less severe over time. But you have to become an expert in the meantime. Learn about your disease, and find the ideas and suggestions that people here use that work to bring about a better quality of life.

I wish you the best.

Great post Joe. I have never heard the fatigue thing explained that way and it makes so much sense to me now!

Fab that Joe, enjoyed it, and learnt some new stuff too!
xx

Thank you all for the wonderful replies. Reading the posts on here really has helped me learn so much already and feel less alone.

Joan....you asked about my dose of prendisone. I take 40mg daily right now. I am having another CT scan done on friday (which will be 2 weeks after the original) and I am hoping that it will show improvement and a weaning of the steroids. I am also taking 1000mg of Pentasa QID. And some calcium and vit D tablet bid....which reminds me of a question for you guys: Does it matter what calcium/vit d tablet you take??? I know crohn's can cause terrible joint problems and osteoarthritis and I would like to start taking some steps to prevent it.

For the past 2 days my right side has been killing me. I don't understand why it's starting to hurt so bad again. It's making me nervous and I am actually happy that my CT scan is soon so I can know what it going on.

Regular Joe....what a wonderful post! Thank you so much! Your insight has been wonderful and has already taught me so much! I really look forward to getting to know all of you!

Thank you so much for having this forum. I think I would be crying constantly if I didn't know there was support out there.

Hey what's your name?

re: calcium and vit D, I take a multivit+iron which has vit D in it, and cod liver oil +vit D. also 2 calcichew a day, and 3000mg Pentasa, I don't think it matters which particular vit you take.
40mg of Pred is quite high, so you should start to feel the benefits soon, try not to worry, and good luck with Cat scan this Friday.
xx

Thanks Joan! My name is Antonella! That's a whole lot of vitamins you take.....I think I better step it up and add a few more to my list. Thanks for the good wishes for Friday....I just want it to be better so that they can do the colonoscopy.....I want that done and over with!

Welcome Antonella. We've all been through similar experiences as yours. My CD was diagnosed when I was 32 as well. I have been told tat CD will either show itself in the late teens or in the early thirties.

For me, when it was just CD ilietis, it manifested itself mostly by being fatigued, REALLY tired. My eyes and joints would then join in and become inflammed. Then it went away for ten years, no symptoms.

The CD then came back with a vengence in 08. Blockage. Now, our friend Mr. CD has moved into the colon and has fistulized.

I too am still doing Pentasa, 1000mg QID. I was never on the Pred.

I wish you luck, DO NOT GIVE UP!

Watch your diet and maintain a positive attidude.

Don't forget your vitamins, potassium is very important as well.

This forum is great! Reading all your experiences, especially Joes on fatigue, have helped me feel slightly more 'normal'. Well, as normal as a person with CD can feel!!
Anotonella, I really hope you start feeling better soon. I was in remission for 15 years before this latest flare up, so there WILL be times when you feel good again. And when those times come, you must take advantage of them!!
Good Luck

Antonella, I can only share in your emotional scars as it is my son that has crohn's. I don't have much to add except to let you know that by posting your situation and learning from others you help educate everyone. This has been a very informative thread. Thanks and good luck.
Mark

Mark......I am sorry for you and your son. I am so glad I have found this forum....I have only been on a couple days but I already have learned so much and feel better knowing I am not alone. Best of luck to you and your family.
Antonella

Welcome to the site and a great group of friends. On here you are surround by a wealth of knowledge (from people who deal with it everyday) and support.

FATIGUE, that is an understatement!!!!! ZZZZZZZZZZZZZZZZZZZZZZzzzzzzzz Sorry, dosed off there, LMPO. I never understood why I was always so tired, but when you think about it your system is always fighting itself, which explains it. I have tried adjusting the amount of time I slept to see if that would make a difference, NOPE. I sort of take it day by day now, see how I feel and adjust accordingly.

We understand your fears and have all been there, in one way or another - if you have a question ask it, I am sure someone on here can help somehow.

Hi Antonella! Welcome! Glad you found us

I recently read "What To Eat with IBD" by Tracie Dalessandro and it really helped me A LOT with learning about the types of supplements/vitamins I should be taking with Crohn's disease. There are also lots of great recipes that are good (though you will still have to do trial and error as everyone has different foods that are okay and others that bother them).

You will find great info and support on here!

Thanks Marisa for the suggestion....I am gonna look up the book on Amazon right now! And what a beautiful name you have....it's my mom's name

Oh cool! Yeah I just bought the book on Amazon for super cheap because it was used (less then $10 I think). There's a sub-forum on here with some other good book recommendations too.

I'll be sure to check it out!

Welcome Antonella,
I know how you feel. I was diagnosed a couple of months ago and it's still a shock. I'm 44 but in hindsight have probably had Crohn's since my thirties at least. I didn't realise how carefree my life was before! LOL
But it will get easier. Glad you found the site as there's lots of support here for when you need it.
Gail
x

Gail..... so funny that you mentioned the "you didnt realize how carefree life was before"....I am already feeling that way and it hasnt even been 2 weeks for me yet. Amazing the things you take for granted.

ataloss said:

I am hoping to learn something, make new friends, get some advice, and maybe just have someone to listen who won't just say "oh it will be fine just give it a few days and you will be all better" because although I am at a loss I know that phrase it total bullsh@#!

Click to expand...

You came to the right place. You will learn a lot here - about meds, about all the different aspects of Crohn's, things you never thought were related but probably are, etc etc.

It's normal to be confused, scared and generally "WTF??" at first. I still am and it's been a year since my dx!

Fire away with questions or if you just need to vent!

- Amy

Thanks Amy!!! I look forward to getting to know everyone!