I'm new, here's my story

[lesley]

Hi everyone, I just found this support group today and while it frightens me a little to read the posts here, I'm going to try.

I'm 21, I was diagnosed with Crohn's disease in August of 2009 (age 18) via a colonoscopy. Prior to that I was suffering undiagnosed for approx 10 months. My problems weren't typical Crohn's symptoms so my doctors never thought that was the problem. I was having severe pain and cramping in my upper stomach, to the point that I couldn't eat or walk or even talk sometimes. An endoscopy revealed something that was indicative of Crohn's so they did a colonoscopy and found my bowels were ulcerated.
Despite being diagnosed in August, I didn't enter remission until November, and did some time in the hospital. I had to go on Prednisone for 9 weeks to achieve remission and I ended up needing more 2 months later. Since then I've been on Asacol, Modulon, Entocort, and taking B12 supplements.
I also have Grave's disease and am taking a thyroid medication, Synthroid.

For a long time I felt as if I didn't really have a disease anymore, I was not having problems.
Probably for the last year or more, I've been not feeling 100% but nothing serious, until the last month/month and a half.

I cannot stop going to the bathroom when I wake up in the morning, every morning. I get up, I spend a half hour in the bathroom, and then once I leave, I'm back again 3-4 times in the first hour. And then on and off through the afternoon I am back again. It's not diarrhea but it's not formed either.
Once it gets past noon or so, when I'm going to the bathroom I am just having contractions and not even passing anything, but it feels like I desperately need to go. The contractions are intense.

The worst part of all this is that I have developed SERIOUS anxiety over my Crohn's. I was recently put on Effexor to try to control my anxiety and my depression which have been caused by my Crohn's and the fear I feel regarding it.
Just talking about it makes me feel light headed. My heart races. I give myself hysterical fevers I think.

I had such a bad experience with my colonoscopy and at this point I absolutely refuse to have another one unless I can be completely asleep. That bad experience is where pretty much all of my anxiety comes from.

These new symptoms I'm having are scaring me so badly because bathroom problems was never an issue for me. My Crohn's was all stomach pain until now. I can't stop thinking about all the things that could be wrong and I've turned myself into an anxiety-ridden hypochondriac.

I need to change what is happening because I basically can't leave my house at this point. I recently lost my part time job which is good I guess because I would have had to quit by now. As well I am on summer vacation from university. I have no idea how I could work like this and thinking about returning to school in September is alarming me.
I am supposed to be visiting friends in Quebec right this moment but I had to cancel my trip because I didn't know how I could get on a plane or stay with them or anything.

I'm terrified to return to my gastroenterologist. Terrified of what she is going to tell me. My next appointment is in a month.
I'm so horrified that I have to spend the rest of my life with this disease and I'm feeling so depressed about it. I don't really know what to do. I'm so scared, and it's so out of character for me. I just don't know what to do.

 

[David]

Hi Lesley and welcome to the forum! I'm so glad you joined

First off, you're not a hypochondriac. You have very real symptoms and a very real disease and it's understandable to wonder what is going on. And it's understandable to be scared as well. Some aspects of IBD most definitely are scary.

You mention that you're on vitamin B12. What sort of dose are you taking (oral or injection) and how often?

You mention you're on Modulen. Is that all you're eating or is it just a supplement for you?

I wouldn't want a colonoscopy unless I was completely asleep either. I think your stance there is a good one! Screw being awake for that!

I understand your fear, but do you think it's possible for them to move up your GI appointment?

We're here for you!

*hugs*

 

[lesley]

Modulon is a drug I'm on, that might be a Canadian name for it, its common name is trimebutine. I have to take that a half an hour before each meal but I don't always use it on time before lunch and dinner.

I take a B12 supplement, 1200mg once daily. I take it before bed.

Is it normal to be put completely under for colonoscopies? When I had mine I was 18 and they told me that it was impossible to do it completely sedated and "only babies need to put to sleep" (the nurse actually said this to me.) Had I been 17, I would have been asleep.
I was sedated but not completely, I kept waking up during the procedure and it's that experience, the pain and the confusion and waking up, that has me so horrified.

I haven't tried to move my appointment yet because my family doctor thinks that the anti-anxiety meds might take away my symptoms. She thinks they could be caused by the anxiety. I've only been on them 11 days so far which is not enough for them to take full effect.

Thank you so much for replying, I feel welcome here.

 

[David]

Modulon is a drug I'm on, that might be a Canadian name for it, its common name is trimebutine. I have to take that a half an hour before each meal but I don't always use it on time before lunch and dinner.

Oops! My bad! I thought you were referring to Modulen which is a form of enteral nutrition many take. I realize now Modulon is for spasms. My apologies!

I take a B12 supplement, 1200mg once daily. I take it before bed.

I suggest asking to have your vitamin B12 levels tested again. 1200mcg may not get your vitamin B12 levels up to ideal levels if you have issues with B12 absorption.

Is it normal to be put completely under for colonoscopies? When I had mine I was 18 and they told me that it was impossible to do it completely sedated and "only babies need to put to sleep" (the nurse actually said this to me.) Had I been 17, I would have been asleep.
I was sedated but not completely, I kept waking up during the procedure and it's that experience, the pain and the confusion and waking up, that has me so horrified.

Tons of people are completely sedated (myself included) and whoever told you that garbage is an idiot.

I haven't tried to move my appointment yet because my family doctor thinks that the anti-anxiety meds might take away my symptoms. She thinks they could be caused by the anxiety. I've only been on them 11 days so far which is not enough for them to take full effect

Move up your appointment if you can. Let your GI treat your intestinal symptoms.

*hugs*

 

[lesley]

Thank you, that makes me feel better, about the sedation.

I'm not above having to travel to a larger part of Canada for such treatment if they won't give it to me here.
I have an uncle in Toronto who is awaiting a double lung transplant and he thinks I should go there to see a specialist. My province is one of the smallest, who knows how advanced we are with treatments.

They also told me I couldn't be fully asleep in case they perforated my bowels, they would need me to be responsive, or something.

I'm really glad to hear that's crapola. I pray I won't need another anytime soon but if I do, I know the truth!

 

[woops!]

I am so sorry you are going though all this. I don't know much about the medication that you are on, but I do know that you should tell you doctor that you do want to be sedated for your next colonscopy. Patients have rights, and if they are hurting you while doing your next scope they must stop if you tell them to. I would deff talk to them about sedation during you next scope, if not for the pain then the anxiety. Hang in there.... Woops!

 

[Clash]

Welcome to the forum!! This whole not sedating someone during a colonoscopy blows my mind!! Anyway just wanted to say that before my first colonoscopy two years ago, I was extremely anxious. So much so that I believe my GP must've sent word to my GI. When I arrived at the hospital for my colonoscopy, they registered me(signed all the paperwork) then took me on back, hooked me up to my iv and gave me versed through iv. I think that really helped me if you end up having another you could maybe explain your anxiety and ask if they could do the same. Of course, before they performed my colonoscopy I was sedated, last thing I remember was the IV push of sedation, next thing I was in recovery. I just had my second colonoscopy was no longer anxious, didn't need versed. It's definitely all about the experience you have. Good luck to you and I hope you find some answers soon!

 

[lesley]

Well, I was sedated, but not completely. I had IV sedation but was told that I couldn't go all the way under in case of emergency. (Which doesn't make sense to me because I don't want to be awake if there is an emergency...)

I was so nervous for it that even after I had been sedated, my heart was over 200, and they almost gave up on doing it because I didn't calm down. 20 minutes later I guess I calmed down enough and they did it but I kept becoming aware of my surroundings, awaking to the sounds of my own moans and yelps, and hearing my doctor tell me it was okay, and feeling this intense pain inside me where you aren't supposed to feel pain. Each time I remembered where I was and it was so scary.
I wasn't awake for very long anytime I did become conscious but it was too much, and so frightening. It's almost been three years now and I still have nightmares about it.
Sometimes I wonder if the memories have gotten worse overtime because my mom swears I wasn't so shaken up originally.

I mean good lord I was put to sleep to have teeth out (TWICE) and they won't put me to sleep for a colonoscopy?
I wasn't asleep for my endoscopy either, and I have memories from that one too but very mild, I just remember gagging on the way in and the way out but not really knowing either time why I was gagging, I wasn't conscious enough.

I hate knowing that had I not had such an awful experience, I wouldn't have half the anxiety problems that I do. It's all stemmed from that experience and the anxiety of having it (and other tests like it) again.

 

[Clash]

The way it was explained to me was that it would be enough sedation to put you in twilight but not completely under, they used a concoction of three meds to induce sedation and one of those has the side effect similar to amnesia...or that is how it was explained to me. Maybe it is just a difference in the amount they are giving you or the mix of sedation drugs they are using. Also, different people are probably affected by it differently and some may require more than others? But they should take your last experience into account when planning sedation for your next colonoscopy if you require one.

 

[Jim (POPS)]

you poor thing. I have had 3 coloninostopys and every one of them I was PUT OUT, on that Micheal Jackson Drug, lol thats what the gi told me it was. Tell them that you demand that you are what they call heavey sadation. that it the proper way to have it done, now there is another test that they put a scope u p you and i think it is called a ostomy something, thats when they blow air up you and you are awake. I've had that also but they can only go so far and not all the way to the end of the colon. I am jst like you when it comes to having SERIOUS anxiety about crohn's. I have had 2 operations and the first one I went septic 7 days after and they had to go back in and I ended up with a bag on my side. I WANT TO MAKE YOU FEEL BETTER AND NOT TO WORRY ABOUT THIS ILLNES. I am 61 years old and got it at age 60, my wife got it at 26 and is now 58 and has many operations and everytime thinks worked out, PLEASE don't think about what might happen, live in the monment. thats all we can do. AND insteed of avoiding getting help, be pro=active and bug the **** out of the Dr's to help you. I have been around crohns most of my life, my wife and I have knowen each other since she was 12 years old, she was the little girl that lived next dor that I use to say, :get the hell out of hear" when I was playing football with my friend when I was 16-17 and she was 12. She got it at a very young age and has had every kind of operation and test that there is out there. She has not died, and you are not going to eather. Google it, people live as long as all the other people. with that said, YES, we do have so times when we are not in remission and it sucks, BUT the good news is, you WILL get better, maybe for 25 years stright like my wife and then she got sick for a few months, had a resection and has been fine now for over 5 years. Get some help yith the SERIOUS anxiety , but stay away from valiu or any type of benzo drug. Life is long and you will have many more GOOD times than bad time, thats for sure. You are at the age that you may see a cure for crohns, wouldn't that be wonderfull? I'm getting old and I still might see that. There is some resecherch going on that looks good that we should be hearing about in the next few years, if not a cure, much better treatment, SO, to recap, don't be scaried of any treatment or test, OK? OK, all of that is Dr's trying to help you. No test will kill you thats for sure. I have panic attacks all the time, so take it from someone that know just how you feel. your going to be ok. If you don't feel well,GO TO THE DR, don't let it get worse lie I did for over 10+ years and then all hell broke loose. your young and you will have a full life infont of you. Stay hear with the god people at this forum, get friends, and David really know what he is talking about. Your going to be just fine girlfriend. I will be pray'n for you. and FYI when I went to Viet Nam in 1969, that skinny little girl that I use to say, get the hell out of hear, sent me a letter every week the complete time I was over there, when I came back I was so messed up in the head with panic attacks that I couldn't leave the house for a few years, SO, she lived next door and I can remmber setting on the porch at night talking to her about ALL the **** I went through in Nam and she helped me out alot. When she was 17 I ask her if I could take her to the movies for her 18th birthday and she said yes. little did I know that we were both in Love with each other for the last years or so but never acted on it. The night we went the movies we both came clean with eachother and that is a night that I will never forget. We got married 9 months later and have had 4 kids and now we have 5 grand kids, Who would have guessed. A true love story.
So, since I ended with a good story, I want you to think about how good your life really is. We at this forum live with crohns, we don't live FOR crohn's
Love ya and God bless.
(Sorry for some poor spelling, not to good at that)
Pops

 

[ThatsWhatSheSaid]

Lesley, a lot of your story sounds very familiar. My first colonscopy did not go well at all, I came out in the recovery room yelling at my doctor that he was a horrible doctor because I was awake. The nurses and my mom were trying to calm me because they said I was upsetting other patients. I was 18 when I was diagnosed as well, in the fall of 2004.

Since then I've had I think 4 more colonoscopies, each one without a hitch. Because of the incident with the first one, I think they adjusted what they used to sedate me.

To clarify, and I think someone else touched on this, they don't ever actually put anyone completely out during a colonoscopy because it is dangerous. They just sedate you enough and give you medicine that causes you to never remember what happened, so it is as good as being completely out. It sounds like someone did a bad job of explaining it to you. When they told me I wouldn't be completely out I freaked. I have panic disorder and a severe phobia of needles...so needless to say I do not do well in hospital settings. But the nurse took the time to explain that as far as I will ever know, I will have been 'out'. Rather, they need you to be able to be responsive and able to engage should they need you to say move a certain way to allow the camera through better. Every person is capable of conversations and interactions when 'under' for their colonoscopy, they just get it wiped clean from their memory slate by the meds.

Since my first colonoscopy, they actually put me on oxygen now when they set up the IV (this does wonders for calming me until they can drug me) because I alternate between holding my breath and hyperventilating. After they roll me into the room and put me on the bed, I always ask a nurse to hold my hand because I am scared (yes, I'm 25). And then they start to administer the meds and tell me to count backward from 10 to 1. I don't know if I ever get to 8.

My panic disorder is unrelated to the crohns as far as I can tell. But I DO take benzo's and prozac for it. And before my last colonoscopy, I asked if I could take a xanax since they do not administer any sedative until you are in the room, and the whole while I am always a wreck. They said yes, be sure to tell the doctors if I do. So I did. And because medicines freak me out, I told EVERYONE. Every nurse and doctor, the anesthesiologist. Probably a million times. And while the nurse was holding my hand and the anesthesiologist informed me she was ready to administer the meds and the last thing I said was, "Don't forget I took that xanax, I don't want to be overmedicated." And she was like, "you're in good hands, now count back from 10 to 1." I know I hit 10, and maybe 9.

Anyway, I would disagree about just straight up staying away from benzos if it turns out you need them. They help me a great deal. And for my last procedure, it was a miracle because I didn't nearly pass out, have alarming heart rates or blood pressure just from them setting up the IV. Of course, my panic tendancies shined through in my constantly reminding everyone that I took the xanax before coming in. Remember that when you have issues like these, the idea is increasing the quality of life. Don't be too hard on yourself if you discover you need the help of these things sometimes.

 

[lesley]

Whatever happened with me, I did not have the amnesia! Haha. At this point I don't know how my body and mind would handle the idea of having to have another.

I called my specialist's office today about moving up my appointment but had to leave a message. Hoping to hear back tomorrow.
I'm nervous that as soon as I get there she'll tell me I need another colonoscopy but I'm really hoping we can try other things first, like different meds or a CAT scan.
She mentioned the pillcam to me once before but I don't know much about it.

I've never heard of stricture before until reading these threads and now I'm all worried about having that! Haha.

Thanks again for all your helpful messages, I really appreciate having such educated people to talk to.
I wish I could be educated and fearless as you are.

 

[EthanPSU]

I'm in your boat completely, I'm 22, just graduated from college, don't think I can keep a full time job, friends want to go on trips and hangout, but of course I would flare.... It sucks, I just went to the doctors and need another colonoscopy, so hoping that things get figured out quickly so I can move on with life.

 

[ThatsWhatSheSaid]

The knowledge comes with time, but you are just as strong. Perhaps you just haven't discovered it yet. Chronic disease has the one major benefit of really being character forming. You will be okay. Even if you are freaking out right now you will find your way.

Unfortunately no one is fearless. But it takes courage to face the fear knowing that you're doing what you have to do. Take care of yourself.

 

[Jim (POPS)]

leslie,
It sounds like you have calmed down a bit. like I said before, your going to be just fine, trust me and the people in this room, and, you want the Dr. to do WHAT EVER IT TAKES to make you better right. so if it takes putting the tube up there again, thats what it takes. It is one of the best ways for the Dr. to see what is going on up there. Also a CT for the uper is the best, but for the colon, a bereum enama is also a good way to see. So don't just hope she will give you pills or something, hope that she does what it takes to get to the root of the illness, if not, you could get worse and have bigger problums. I'm sorry that it sounds so hard, but the truth is with crohns, you WANT THEM to do what ever it takes to put you in remmision. RIGHT. You can do it All of us hear have done what we have to and you are no different. You are just as strong/week as we were at the time. let go and let God, I hope it's ok to say that, if not please let me know.
take care and keep us up to date.
Pops

 

[nikimazur]

Crohn's and anxiety are like a merry go round from hell. It's like a constant cycle. I had anxiety from a traumatic brain injury, and had it under control without meds until I developed Crohns symptoms. At first I was even just diagnosed with IBS, saying that it was all nerves, and was even treated with Elavil, an anti anxiety med to control the IBS, needless to say, not IBS. The Crohn's has made my anxiety a million times worse, and my anxiety makes my Crohns worse. My best advice is to ask for anxiety meds, whether it be benzos to get through your next colonoscopy, or daily meds, at least until you get the Crohns controlled. I'm only 23, and can definitely relate. College and life can be so difficult, but for now focus on the little things and try to stay positive.

 

[toolong]

Hi Lesley,
Welcome to the forum, I am new as well. I have had Crohns for 32 years, I was diagnosed when I was 8, hard to believe but very true. Therefore, I don't remember any other way of life, for me, no matter where I go, the first thing I do, is locate all bathrooms. It is a running joke in my family, they all ask me where the bathrooms are when we go out, because they know I have already scoped them out. I have had only one major surgery and 3 minor ones. The best advice I could give you is make sure you trust your doctor(s). I understand the anxiety, I would almost bet everyone here has it from time to time. If you don't trust them than it is that much harder. For me, leaving the house is very difficult when I am having issues, last time I traveled I stopped at every bathroom I passed at the airport. I used to be embarrassed but realized people don't even notice, and my friends, my close friends, know I have issues and understand when it is worse that I may "disappear" from time to time. Please find a partner whether it is your personal friends or people you meet on here, it can only help you. These are the things that have helped me over the years. I wish you the best... try not to worry too much.

 

[ThatsWhatSheSaid]

Even though I do not think in origin that the panic disorder and the crohns are related, I do agree completely. My panic is horrible and it revolves around the notion of me dying...I have to think that on some level my mind doesn't trust my body. After being diagnosed with crohns despite otherwise good physical health, I guess perhaps my mind is right to be distrusting to a degree.

Anyway, because stress can cause a flare up and/or exacerbate symptoms it is best to deal with each issue. Nikimazur what are your anxiety issues?

 

[nikimazur]

A combination generalized anxiety disorder, and bad PTSD which is prevalent in TBI cases... Unfortunately it comes out as Agoraphobia, kinda of social phobia...which added with the Crohns is slightly miserable. I hate being on meds but I seriously am so thankful right now for my anti anxiety meds, seriously made life bearable enough to deal with the nasty belly problem

 

[David]

Even though I do not think in origin that the panic disorder and the crohns are related, I do agree completely. My panic is horrible and it revolves around the notion of me dying...I have to think that on some level my mind doesn't trust my body. After being diagnosed with crohns despite otherwise good physical health, I guess perhaps my mind is right to be distrusting to a degree.

I've done a tremendous amount of internal work (meditation and various other techniques) and have come to realize that it is my body that is traumatized and doesn't trust my mind or western medical doctors (understandably so). I'm slowly working to rebuild that trust. Each successful step results in a noticeable reduction in tension and disease.