How do you deal with this AND everything else in life?

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allieinwonder

allieinwonder

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Ok, so I am having some trouble with life at the moment. This is both a rant and a "looking for advice" thread.

Just a little background...I have had symptoms of this illness (whatever this illness may be) since I was 15. It only started to get back about 15 months ago. When it got this bad, I pretty much dropped everything I was doing in my life. University, sorority, work, etc. I dropped everything, moved to Germany with my husband, and focused on my health. I told myself I would focus on my health until I got a proper diagnosis and treatment, and I thought it wouldn't take more than a year. Since October of 2010 I haven't had a lot on my plate.

Well, the year I gave myself ended a couple weeks ago. I have since moved back to the states, and I have moved back into the sorority house. I am still waiting on my pill cam results, so I am at a standstill for possible diagnosis/treatment.

My issues right now is this. For one, I am really feeling like utter crap. I am seeing stars pretty much all the time, I am going to the bathroom 12 - 14 times a day, and my pain is so high I am having a hard time walking. I just want to cry. I am barely able to eat because I get nauseous after a couple bites. I have developed another crack on the corner of my mouth, which I have been told by my GI is a reaction from an autoimmune disease or malnutrition. I have contemplated going the local ER and going "HELP!!!" a couple times. My GI pretty much left me hanging on keeping me feeling ok until I get my results, so the only medication I have to take right now is tramadol, which I am taking a couple times a day just to keep myself together.

So because of feeling like this, I am having a really hard time leading the life I used to lead. I know I can't be the do everything girl I used to be....but even the little amounts I am doing is seriously getting to me! 9 hours of university classes, being a member of my sorority, and trying to keep up with friends and family....I just don't know how much longer I can do this. I know this is really hard to convey on text, I don't want to sound like a whiner...but this pain...I am seriously worried.

How do you guys do this? How do you do this day in and day out? I know this will get better once I have a proper treatment...but I just need some tips on how to do this. I want to be able to be a friend, a sister, etc. I want to be able to enjoy my last semester of college. But I feel as though something is seriously wrong, so how am I suppose to just get through it?

I am really frustrated right now. I wish I had a better way to go about this. I really wish my GI didn't leave me this way...because I feel like even though I feel like UTTER CRAP, if I go to someone right now they aren't going to do anything for me. My history is complicated and makes me look like someone who wants attention, which is NOT the case.

If you read all of this, thanks. :) I am really at the end of my rope and I really don't know what to do. I just hope I can at least get through these next 2 weeks....I'm suppose to get the pill cam results around then.
 
Oh honey, I have felt the way you are feeling so many times. My best advice is to not be so hard on yourself. This is not your fault. Letting go of the guilt that comes from not being able to be "fun" and "perfect" is so important.

I also wanted to say, I am giving you permission to go to the ER. I say that I am giving you permission, because I think sometimes we don't go because we feel like it might make us look weak, or that we really aren't bad enough yet to go. I have learned that if it is even a question, it is time to go. Please don't let something preventable happen because you are afraid of what others might think. They can get you out of pain at the ER, and might even be able to do some tests that will continue to send you down the right path.

Please hang in there. We go through really hard times or "flairs" with this disease, but if you take care of yourself, they don't last forever and you can learn to have a beautiful life, even if it isn't exactly the life that you envisioned for yourself.
 
I also want to say that dealing with life and this disease can be incredibly hard for all of us. Letting go of the person that I thought I had to be has been a big help for me. Some days I don't make it to work. Some days my biggest accomplishment is getting the laundry done. Some days (when I have been in a terrible flair) this disease is my whole life. But that is not my fault, and letting go of that guilt not only helps me emotionally, it helps me physically.

Being grateful for the good things in my life like the friends who stayed even after finding out I was sick, my family, and my wonderful husband, also help me deal with the hard stuff. Not to mention my dogs! It can be so hard to be grateful sometimes, but I know that trying helps me.

Good luck! I really hope you are on the road to healing soon.
 
Nicole is so right on! Go to the emergency room. Its okay. You are probably dehydrated and need fluids. Yes Crohns disease is not pretty but I have lived with it for 29 years. It may take trying a few different meds to find the one that works for you but trust me there is something that will help you. 6mp was my saviour. Your doctor probably should have put you in the hospital. Dehydration can be dangerous. The stress you are in is only exacerbating your symptoms. Go to the hospital and do not leave until they help you.
Diane
 
You are so right, you really do have to leave the "old you" behind. I was able to do that in Germany, but when I got back here I automatically tried to be my old self again. My friends and family don't quite understand how I have changed either. I used to be president of my sorority, so they really think I can do anything. And I really wish I could be that person again! I don't want to regret anything with these last four months...I want to make the most of them!

I just really wish there was a way to balance the two. I'm pretty much thinking I'm going to continue to have a harsh reality that it can't happen. Especially with how I'm feeling and how much I want to do...

Thanks for the ER talk as well. I'm just so afraid they will either label me as a drug-seeker, and send me away or just think I'm downright crazy. I've had so many tests that I don't what else they could do. That's why I'm trying to hold out for the pill cam results..but I'm still thinking about going, especially if it gets any worse. I can't deal with it getting any worse. :( My stomach has been persistently warm to the touch where I'm in pain, so you would think that would show something is actually wrong.

I agree dpoteet, I probably am dehydrated. I have been dealing with the heat here and it is ridiculous! I have been drinking like a mad-woman trying to keep myself as hydrated as possible.

Thank you guys so much for the support. :) I really don't know what I would do without guys like you!
 
Answering this is a little hard for me because I've had Crohn's for the majority of my life (or maybe its easier for me to answer, I dunno). When you're so used to a certain way of life, of course change is hard. For me, going into remission was hard at first (believe it or not) because I was so used to not being able to do anything I didn't know what to do with myself. I was a bit timid about getting out there and doing "normal" things (eating anything, going where ever, hanging out with who ever when ever etc.) but was able to adjust quickly. For me, the adjustment is always quick because I've gone from flare to remission to flare a few times since my diagnosis. You learn to do what you're able to do. For instance frequency can be a huge problem for some people and some choose to stay at home rather than accepting that that's part of who they are right now. Most of the time frequency can be worked around but not all the time cause it can do more damage than just sending you into the bathroom all day it can make you feel miserable because of all the water and nutrients lost etc. So basically you learn what you're capable of doing in the moment (that's how I live my life, in the moment). Maybe you can go to class with frequency but later miss out on something else because the diarrhea has just shut you down physically and emotionally. In a way I do and I don't plan for things. I know what I have or want to do tomorrow and next week etc. but that doesn't mean all, any or none of it will get done.

We cannot control our sicknesses. No matter what sickness/illness you have, you cannot control it. So in this case I'm open and honest with people whether its a professor, coworker, boss, friend, family member etc. (basically someone I have to or know I'll be interacting with) so they know/understand/at least were told (even though they have no idea what the hell I'm talking about and I'll probably have to tell them again later when they totally forget because they live in their own little world) what's going on with ME so they don't think I'm some crazy person who doesn't want to see them anymore. This doesn't mean that I don't want to be invited anywhere, it just means I automatically may or may not go or may or may not do the work or may or may not get out of bed etc. Telling people ahead of time gives you a chance to figure out what to do now and helps you avoid future awkward or mentally stressing moments (say you didn't finish your paper in time due to your illness but you never told your professor about it and he told everyone that no one can turn theirs in late unless the reason is legit. How are you gonna try to weasel back into their good graces all of the sudden the day its due? Avoid that at all costs.).

Ok so let's say everyone you know knows that you're sick and you're having all these tests done to figure out the issue so it can be treated properly. How do you be yourself is that what you're asking? I am a sister and a friend and a lover and a college graduate. We can be all of the above no matter how sick we are and no matter what that sickness is. You be yourself and you live in the moment because living is about enjoying all the good things in life and it sounds like you have plenty of good things around you to keep your sanity and to help you through this terrible time. Do what you can do when you can do it. If you're feeling good today/this hour/this minute, take advantage of it and don't waste it. Sometimes we can't see our friends or family everyday but I'll tell you it doesn't take that much effort to lay in bed with a phone against your ear or take them with you on the phone to the toilet (they wont know unless you tell them). I've had to do that with everyone close to me. I've talked for hours to friends and family and had a great time just sharing stories or talking about that fly walking on the wall. Everyone else you know is just as bored as you are because you aren't over there brightening up their day. ;) Sounds totally sappy but its true for my friends at least. I pick lazy friends who don't do much apparently. :p

Now I'm wondering if I'm rambling. How long is this post anyway? We'll find out! Glad you read my book. Hope it was a good read. :p Ask away if you have any other questions or if you just want people to talk to. I'm usually always around.

Careful with that Tramadol. Its hurts some people's stomachs and can make you nauseous. How long does it usually take for pill cam results. Does it really take almost a month or is your GI just not getting in touch with you?

I hope you get a diagnosis soon. Honestly I wish you would crap out a worm or a bug and be cured. Sounds gross I know but that would be a thousand times better than a life long illness. And don't worry about people thinking that you're faking or whatever. You know how you feel and you're gonna get it figured out no matter what others think.
 
Yes, I was pretty much asking how to be myself. :) I know it sounds like such a simple question, but it seems really difficult to me right now! And you are right, living day by day makes a lot of sense. I just wish my friends weren't pretty much assuming I will do everything because of my past actions and because that's what you normally do in a sorority. I also feel better emotionally when I do all of these things..so I keep doing them...but now I am REALLY not feeling good and I don't know how to react and get a balance so to speak.

School is my number one priority. I know I will try my very best to get that done FIRST. Its my last semester, I got to get it done! It's why I am here in the states after all.

I wish it was just a bug too, trust me. They have told me since I was 15 that it was probably crohns, and I obviously made the wrong move by ignoring it and treating it as IBS for so many years. I just wish a test would show it! My GI is military, and he went on a temporary assignment two days after my pill cam exam. He sent me an email the day he left saying it would have to wait until he got back at the beginning of September. He literally left me hanging.

I am careful with the tramadol! They have been prescribing it for me since last September, so I have learned how to take it. I don't get nauseous on it, it actually it the only reason I've eaten the little amounts I have. It is slowly losing its effect though, which really upsets me.

Thanks for the advice!! :)
 
Please go to the ER. Go to Kennestone or Cobb General. They have been wonderful to me at Cobb General (Wellstar Cobb) many times. At the very least, they'll hook you up to an IV and that should help a little. This heat and humidity is a killer this time of year, even for healthy people. Hopefully you will get a good ER doc whom you can explain your story to. If you are here for awhile, you can change your region with TriCare and go see a good GI doc in the area. With Tricare, if your spouse is active duty, you should not have to pay a dime so it certainly can't hurt.

Best of luck to you! I can't answer the rest of your questions because sometimes I don't know how *I* do it. So I'm not one to give advice on that. But please go to the ER as soon as you can.
 
Allie
In regard to dehydration.....with Crohns or anything that sends you to the bathroom 12 to 14 times a day, you will dehydrate. No amount of water will rehydrate you because you are losing all the water you are taking in. The main signs of dehydration are; lack of spit accumulation under tongue, lack of urination, cracked lips and if you pinch the skin up on your hand and it takes more than a few seconds to smooth back to normal. I'm not trying to scare you but if you have any of these sympyoms, you need to go to er so they can rehydrate you. With my Crohn's, dehydration almost killed me twice because I was so stubborn (and too tired) to go to er. Dehydration is a sign that your eletrolytes are depleted. Our eletrolytes are the salt and potassium in the body that work together electrically to make our muscles work. Your heart is a muscle....without proper electrolyte function it cannot work properly. It can stop. Please be careful. I was young and stubborn too. I was in denial for a long time because I have the same personally as you. I was and still am a go getter. You can continue to be too, Crohns or not. You will just have to make adjustments...some you won't like but as with everything in life, we adjust. Please let me know how everything works out for you. You have my prayers!
 
Yeah, I really am considering heading over at some point...I just have been sent away so many times, I just don't know what would happen, and it always really hurts when they send me away with no answers. Plus this isn't quite an "emergency" per say...I'm just at a loss right now. I'm not worried about price either, especially if it is really needed. The ER docs always seem to assume I'm a stupid girl who came in for stupid reasons, and I am always so quiet, shy, and nervous that I don't really fight back. It always tears me apart. I've been taking this day by day for so long, they are really going to think its no big deal. ~.~
 
You could also call GI Specialists of Georgia and set up an appt with one of their doctors. I can give you the names of a few good docs if you want. They are all affiliated with Wellstar hospitals and will either get you into see them or tell you to go the ER. If you go to the ER, write down your symptoms, a timeline of your illness and tests. That way you'll have something to refer to if you get tongue tied. Hang in there, try not to get discouraged!
 
If you are dehydrated....it is an emergency. Who cares what they think. Its your life not theirs. So they send you home, at least you know that you are okay. They may be trained in medicine but only you know how you feel. Alot of emergency rooms don't really know alot about Crohn's, so be assertive. Tell them everything you posted here.
One of the things about Crohn's is that people have a hard time understanding how sick we really are because alot of look perfectly normal. Alot of us have what some doctors call a Crohns attitude. We have a problem with not wanting to look sick and weak. We tend to try to hide how sick we really are. Even to ourselves. You know the old saying, ignore it and it will go away. Crohn's doesn't go away, it just hides sometimes. Check yourself for the dehydration symptoms I told you about. If you have any of them, go to er. Be sure to point these symptoms out the doctor.
 
Hi Allie!

I agree with what was said. First of all, you don't need to worry about what others think. If you feel sick and are worried, you need care. It is your life and you need to take care of it. I wish people, even some of those in the medical field would respect that. Dehydration is serious, you probably need to go to the ER.

I can relate to what you have described. I got some minor digestive symptoms at the age of 16. When I was 17-19, they were off and on. I think during those years, I had more healthy days, and longer stretches of feeling good. When I was 19, one of my doctors diagnosed me with a duodenal ulcer. I was on medication for that, and it helped a little. I still had the cramping, nausea, and urgency to go. After some more digestive troubles, another doctor thought I had Crohn's Disease at the age of 19. They did the first couple of tests, then I moved away, and haven't had luck with doctors after that.

I understand the pain an frustrations of going years without being diagnosed. Most of the symptoms came on hot and heavy during my college years. I tried to lead the typical college life, and did what I could. I was on the Dean's List, a member of Sigma, Sigma, Sigma, and worked. I had some social life. I often worried about the upsets happening when I was out, and didn't feel as carefree as my other friends. Even trips to Taco Bell caused me anxiety; wondering if my cantankerous gut could handle it. In looking back, I now see why I suffered so much fatigue even in my 20s. I used to wonder what was wrong with me.

You can live a wonderful and full life, but you will need to be alert to your body signals; watch your nutrition; and allow yourself to get plenty of rest. Crohn's Disease can complicate things, but it shouldn't take all that's important away from you. Hugs to you sweetie! :)
 
Thanks for the kind words AndiGirl. :) I completely agree, it just makes you more careful..I should have thought about that before. :p With sorority recruitment its so hard to just throw up my hands and back off, especially when my sisters seem to want so much of my help!

I am watching everything a lot more carefully now that you guys suggested the ER, I just don't want to go in blindly and get sent away. In Germany I was admitted, and my symptoms are now worse, but I really don't know what to expect from American ER's after the treatment I received the past couple of times. And I was either dragged there by my dad or husband! I wouldn't have gone at all without them pushing me to go. I will be making an appointment with a GI (either my GI that I had before I left since he was in the middle of DXing Crohns or a GI at a nearby digestive disease center) as soon as I have those pill cam results. I really can't feel like this the entire semester!!
 
Allie- Please go to the ER. You are possibly heading for malnutrition and let me tell you- that is horrible. Malnutritiion can cause muscle atrophy. It takes a long time to recover your muscle tone. Don't wait for the pill cam results, please. (I am a grandma and I am putting my foot down, young lady!) Allie, I did not take care of myself and I am paying for it now.

Hugs,
Wendy
 
Aww Wendy you are so sweet. :)

Trust me guys, I am hearing you guys loud and clear. I didn't expect this to be a "go to the ER" kind of thread! I've dropped all unimportant plans for the rest of the week and I am trying to rest as much as possible. I had an ensure for lunch, so I am trying to keep up with nutrition. I always don't seem to realize how bad I get until someone goes, "hello? do you not realize this?". Ha, even looking at how I have been for the past 15 months overall makes me wonder how I have survived...I REALLY wish doctors wouldn't treat hard cases like mine like we are either faking, exaggerating, and looking for attention. Test results that look fine does not mean I am fine. Seriously. And the reason why I didn't go to the ER this morning is because they would run blood tests and they would be fine, and they would say there was nothing showing why I was in pain and send me with a referral to a GI. That's exactly what happened to me a year ago, even with rapid weight loss and a heightened heart rate. My test results always seem to contradict my pain and symptoms, and doctors tell me its in my head and that its IBS. So I feel the ER won't do much good.

Honestly, this pill cam should show damage. My pain is on my left side, right underneath my left rib. German doctors said they could feel the hard inflammation of my small intestine by hand, and you still can. Its also warm to the touch. But my American GI in Germany said that wasn't enough proof, and I waited 6 months for him to finally give in to the pill cam.Why would an ER doc treat me any differently?

I just hope this tramadol can get me through day by day until those pill cam pictures are looked at. If the pill can results are normal...I really don't know what I'm going to do. :(
 
Allie, all doctors are different. You might find one in the ER with a heart and some empathy (unlike your american doctor in Germany)!
 
Allie, could you go to an urgent care clinic? I am not a fan of the ER either unless it's a dire emergency, but if you need IV fluids then urgent care might be a good place to go. I pretty much need a "frequent shopper" stamp card for my local urgent care. Just a few more bags of IV fluids and I earn a free one! ;) Seriously though, they can do IV fluids at urgent care, and simple blood tests and stuff like x-rays, but for anything more severe they'd send you to the ER (an urgent care nurse once told me that they handle everything but heart attacks and babies being born, although I'm not sure if that's quite true). They might not treat you like an ER would.

I'm just saying, it's an option if you do need fluids. If you're dizzy/light-headed, there's a good chance that you're at least somewhat dehydrated. And if your guts are inflamed, water may just be not absorbing into your system as well. I had that with my first flare, I was so inflamed that I was drinking and peeing a lot, but still super dehydrated because I just couldn't absorb fluids properly (although I was so inflamed, they said it was viral gastroenteritis and that I'd be 100% better in a week or two - ha!). It was like oral fluids were just going in one end and out the other without hydrating me at all.

Anyway, I'll stop lecturing now. :) I hope you can find a way to feel better and get through the next couple of weeks until you get those pill cam results! And then, of course, I hope those results get you a diagnosis and some PROPER treatment already and some relief to boot!
 
The last urgent care clinic I went to did an xray, said it was IBS, and RXed me some dicyclomine. I agree, I probably am dehydrated. I'm drinking a ton, and peeing a ton, but I am spending a good amount of time in the heat. I just really don't want another dent on my record of "oh she came in and we found nothing wrong, don't treat her in the future".

If I'm not better by Friday I'm going to the ER (or the urgent care, Cat that's a good idea :)). I'm on the MAX dose of tramadol and my pain is still super high (my inflammation is digging into my left rib). This really sucks, but my fear of the ER doctor reaction is scary enough to get me to wait and to try and chill and take a couple "Spoon days" first.
 
I second what Carrie said. It may seem like you keep hitting a brick wall with doctors, but you also may find one who does take you seriously, wherever you decide to go. There are people on here who have good doctors, so they do exist, however hard they are to find. ;)

In any case, take care of yourself!!
 
When was the last time you had tests like barium with x-rays, a ct scan, blood work or even an MRI? Nothing may have shown up with the last tests you had but since you're worse or the same now something may pop up. It can take a while for things to be visible but if a doctor can feel a hard area then it should pop up on a scan. The ER can run all the tests listed above and you can have those results sent to your GI. You're not going in to the ER asking for pain meds, you're going in asking for help with dehydration and testing. The ER cannot send you away or write you off saying "do not treat." That's against the law. There are two major hospitals near me and I alternate between them to see who can give better care. So if you had a bad experience at one ER you could try another one even if its a bit out of the way.

Let your sorority sisters know that you're ill and doing your best to find the cause but you may not be able to help out as much as you used to and you'll do your best when you are able.
 
I've let my sisters know (they knew already, but I don't really express my pain or other symptoms) and know they are asking me how I am every time they see me. :p

Crabby, you are right, the tests you are describing haven't been done in a while. Last CT scan was a year ago, but my GI told me to avoid them at all costs because of radiation. SBFT was done in May, and it was normal. Last blood work was done in early July, but it was vitamin levels (showed vitamin B was low), so I don't think CRP was done. My GI was all about checking for anemia every appointment, so blood tests were regular. And you are right with the ER as well, but I have still been given the boot! They either didn't have a tech to do the test or they didn't quite understand how much pain I was in. I have a really hard time showing it, and the last ER I was in I even told them I wasn't there for pain meds because I don't want them to think I'm a drug seeker!

Resting has helped a bit! But not much. Thank you guys so much for the kind words and support. :) I really appreciate it!
 
Allie, is there someone (parent, sorority sister, friend) who you could bring with you to the ER? Someone who could say, "She's in pain and she needs this test" or whatever. I've noticed that sometimes I get taken more seriously when I take my hubby with me to appointments. I think it's a bit of sexism - certain doctors feel like they can blow you off because you're just a silly woman having silly women troubles, but if you've got someone with you they're less apt to treat you like this. I know your hubby is still in Germany but if there's anyone else who can go along with you, bring them with!
 
Yeah, I have plenty of friends and family here that can take me. :) My dad took me last time, right after I dropped my husband off at the airport to fly to Germany a year ago. My dad was a great support, but when the doc said they couldn't find anything my dad started talking to them about my history when he has never gone to a doctors appointment with me. I know if I do end up going I am going to show my symptoms 100% and not take Tramadol beforehand...this stuff is serious! And I have learned my lesson on being polite...it gets you nowhere ~.~. I'll probably ask my dad to meet me there, he works right near the hospital with the digestive disease center. I've obviously haven't decided if I'm going or not..I feel like I can keep going at this point, but if it gets any worse I'm going. I just want to be absolutely sure and prepared!
 
Hiya, try not to worry about them not believing you, I had a great consultant who at the very beginning said to me I treat the symptoms not the diagnosis. I too like you put off going to A&E as i'm never sick and didn't believe I was. Eventually I had to go due to the pain and was diagnosed with suspected appendicitis all a bit of a whirlwind until I said I'd had the symptoms for a while when suddenly the doc looked at me and asked if I frequented A&E often. He obviously thought that was my past-time anyway reluctantly he admitted me and ran a few tests. they all came back normal except raised crp (90) and Wbc, anyways they sent me on my way and that was that. Long story short I became very ill and it turned out I had a perforated bowel. I was so reluctant to go back to A&E after the last time that I actually refused to go, it was my GI who phoned me after taking bloods and demanded I go straight away non negotiable (my crp was 280) and that was when I was actually starting to feel a bit better!!! what i'm trying to say in a very round about way you are number 1 do not let past experiences put you off going to get help. You should not be in that amount of pain and you should not be going to the loo that often... go and get help believe me there are far more people who go with a lot less symptoms. It might also be refreshing to get a new set of eyes on your symptoms and a possible diagnosis. Hope you feel better soon and don't try to cope with all that you used too you need all your resources into getting better, as you say once they give you the right treatment you will feel better and will ne able to resume all your old activities. Don't be too hard on yourself take a break your family and friends will understand.
 
How do I deal with this and the rest of life's little struggles? I dunno, I just do....lol.

That's not an answer - because I really don't know how to answer that part of your question. Like Crabby, I was diagnosed very young, so my life has revolved (AND evolved) around my disease.

Sometimes it's not easy, but there are choices you have to make. For example, I knew from an early age I wanted to be a nurse. As I grew up and got ready to go to university, I had learned my body enough to realize that I wouldn't be able to handle shift work, so being a "typical hospital nurse" wasn't going to work. So I geared my education and career towards community/public health nursing - a bit of a more regular schedule that my body could handle.

I love to be outdoors: camping, fishing, quadding, that kind of thing. My husband loves it as well. Camping with CD can be a challange (especially where we live - less "civilized" camping; more "bush" camping) - not always toilets around and that sort of thing. My hubby wanted me to be comfortable and still be able to go out with him, so he made sure to look for a holiday trailer that had a reasonable bathroom in it, and a comfy bed - so the days I didn't feel like going out in the boat or on the quad, I could still be out "camping" and be comfortable.

These are just a few examples of how I made MY life a bit easier - and as time goes on and you mature with your disease, you will find options for yourself as well. Sometimes we can't do all the things we want to do, or maybe we can't do them all at once, but number one priority in this life is you - take care of you and the rest will fall into place.

(PS - because of the diarrhea and nausea and such, can you take some Boost or Ensure or something to see if you can get SOME nutrition in to your poor little body? Otherwise, I have no other tips other than what was mentioned. You KNOW the right things to do for you - you just have to do them. :) ).

Hopefully you get some answers soon. Squishy hugs from The Moon.
 
Keep putting one foot in front of the next.

My Crohn's didn't get bad until I started law school. I'm working full-time and going to law school. . . and it was my first year of law school when my health exploded. My second semester, I was hospitalized twice, placed on 6 months of IV antibiotics, given steroid injections to help with my anemia, lost 25 pounds. . . it was a nightmare. My coworkers and classmates thought I was dying. There were times that the anemia was so bad, I couldn't walk.. I crawled. I threw up every morning, was in too much pain to dress myself without help, and looked like crap everyday. People would stop me on the way to class and beg me to let them carry my backpack for me. There were plenty of times for the first couple of years that I pretty much wanted to die everyday. You know what though? My job and school gave me a reason to get up in the morning. I imagine being this sick, and just sitting at home by myself all day depressed because I don't feel like I can do anything in life. I don't want to live like that.

My biggest regret was putting guilt over missing work and and my pride in refusing to miss a semester ahead of what I needed to do for my health. That was stupid. But this is now. Make smart decisions, not emotional ones. If you're not ready to handle it yet, then don't. Ask your doctor if you need to wait until your disease is more stabilized. Take 6 hours instead of 9. Whatever it takes.

Also, tell your professors. Crohn's Disease is a reconigzed disability in my school, and professors are not allowed to hold it against you if you miss class due to illness. You don't have to go into details with your professors. Talk to the appropriate dept at your school and go armed with a doctor's note.

It's not all bad.. :) I'm stronger and a better person because of Crohn's - and I'm proud of my comeback. Last summer, if I wasn't at work, I was on bedrest and on IV meds. This summer, I spent every weekend going out and doing something fun with my friends. I even climbed a mountain:) I never thought I'd be able to do that! I'd had a relapse the week before and was scared that I would have to cancel the trip. I felt like a champion when I reached the summit! Because I've had to work so much harder than everyone else to get where I am, I know what real victory looks like. I'm tough. And I've realized that my illness has made me more compassionate and kind, and .. honestly, because I know what life sucking looks like, I'm a lot happier when it doesn't suck and I take advantage of being well when I feel good. And as I learn how to cope with my disease, I'm able to enjoy so much more out of life than I did before. I love more, I care more, and I rest more. Even though this disease sucks. . . I really don't know if I would want to be different than the person it has made me become. If that makes sense.

If I had any advice for you, I would tell that it's ok to drop everything when you're sick and need help. Even if your job and friends give you crap for it. You can only fit so much into one day, and while everything you're juggling may be important.. if you're headed for a crash, it's ok to drop the balls and sit down for a spell.

Take time out everyday that's designated just for you. An hour, two, however much time you feel like you need. During that time, don't let yourself think about school or your disease or bills or anything that's stressing you out. Just do something that relaxes you. I used to paint birdhouses and bake brownies:) It's ok to tell your family if you need time alone to heal.

I'm so sorry that you're going through this. I know how hard it is to juggle school with this illness. But give yourself some credit. A lot of people never would have gone back. A lot of people wouldn't get out of bed. But you do. Just remember that school is stressfsul, and stress makes your disease worse. And the stress isn't worth getting sick over. Learn relaxation techniques and try to find ways to keep yourself at bay.

I don't know if you're religious, but I love the Sabbath. It's one day of the week that I tell everyone "Sorry - I have to be lazy today. It's God's commandment" - you don't have to be religious to take a day off of life!
 
PS - if you feel like your GI isn't helping, don't be afraid to get a second opinion. If you have a regular doctor, you should never feel lost, alone, or abandoned medically - you should understand what's happening to you and what path you're on to get better. That knowledge helps.

When I first got sick, I delayed going to the ER for a long time because I felt silly because I couldn't believe it was ER-worthy. So I finally went to one of those CVS nurses who treat colds and write doctor's notes on the weekends. She told me to go to the ER immediately. I played the same "if I'm not better by.." game. I was admitted for 7 days and put on a clear liquids diet. I was quite surprised when I realized I wasn't going home anytime soon. You might want to bring a change of clothes or a toothbrush or something just in case:)

Have you not had a colonoscopy? I'm really confused about how your doctor is trying to diagnose you? I've probably had more than 20 CT scans in my lifetime.
 
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Archie, thanks for the ER advice. I've seen so many people go through similar things, and I know I am sadly one of them. They really focus way too much on test results!

Silvermoon and Loriebird, thank you for the advice and kind words. They seriously were awesome. :)

Silvermoon, I am drinking ensure. I learned the hard way about a year ago when I lost 12 pounds in a week when I was busy and never ate. I've been able to keep my weight pretty well on them!

Loriebird, I have had a colonoscopy, December of last year in fact. It was normal. They told me IBS at that point, but after months of appointments with cracked ulcers on the corner of my lips, more weight loss, a hospitalization, and an ulcer that ate through my tongue... they finally did the pill cam. My current GI doesn't think its Crohn's, so he isn't taking looking at my results seriously. He left the office two days after I had the pill cam and wont be back until September 1st! I've had almost every test they can run for Crohn's actually. My old GI, who saw all the nasty symptoms first-hand, thinks its Crohn's of the small intestine. He moved right after he decided this...which really sucks! As soon as I get those pill cam results I'm taking my case to another GI here in Atlanta.

Oh, and your advice on the school dept stuff is great. :) I already plan on going to the disability office to see what they can do for me just in case things go more south during this semester.
 
Good luck, Allie. I hope your doctor figures out what's happening to you and you get on a track to wellness soon.
 
Cat-a-Tonic said:
I think it's a bit of sexism - certain doctors feel like they can blow you off because you're just a silly woman having silly women troubles...
Click to expand...

Yes, good grief, you've hit the nail on the head. If you want to be treated like a malingerer, all you've got to do is be a female with a tummy ache.

AFTER the Crohn's diagnosis, I went to a walk-in doctor (my GI was out of town). I reported that one or twice each hour I would have pain that threw me to the floor, yelling in pain. If I managed to sleep (leaning on my side on the couch, not lying down), I would wake up within an hour yelling in pain. I waited Two Weeks before seeing a doctor, in case the problem resolved itself (it kept getting worse).

He prescribed an anti-spasmodic. At half the allowed dose.

[Safe to say, I was thrilled when GI got home and I got actual help.]

I now get anxious whenever my GI's secretary tells me he is out of town. Anyone else treats me like a flake.
 

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