How do you do it?

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imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 9/9/2010 12:03 AM (GMT -7)   
I don't know how much longer I can keep this up. The abdominal pain everyday, the D, the joint pain, fevers... It's been especially bad this last week. I've been bed-ridden and in the E.R. twice. I feel like the only reason I'm keeping up is the pain pills. I went back to school this semester thinking it would help to keep my mind on the work, but I've already missed five classes due to E.R. visits and subsequent rest. I'm so frustrated and depressed. I had my colonoscopy on August 11th and haven't even heard from my doctor (I think because I have a bill in collection from this doctor). I just want it to end. I feel like my young years are being sucked up by this disease and I'm sick of it. Sick and tired of being sick and tired.
I'm going back on SCD tomorrow. Trying to take charge again.
What can I do to increase my pain tolerance or at least me get through the tough times without breaking down? At this point I'm about to go back to my GP and beg him to hospitalize me. I'm having such a tough time getting through this alone.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/9/2010 12:39 AM (GMT -7)   
Hello, sweet girl.

Yes, it is hard, and sometimes all you can do is endure as best you can. When I've been at the point where I honestly didn't think I could make it through another day, I've made check-lists, where I get to check off every hour (or half-hour, or fifteen minutes) and then celebrate with stickers or glittery pens or whatever makes you smile, when you get through a whole day. I still have some of those checklists, with big congratulatory notes at the end saying things like "I got through Tuesday!! and didn't think I could!" and they still make me proud, even years later.

In all honestly, I think that if you're struggling this much, then it might be a good idea to ask your doctor to put you in hospital. There are times when it can be a relief to surrender some control, and to ask someone else to assume some responsibility for your health and wellbeing so that it's not all on your shoulders.

Please remember that being sick is NOT a personal failing. It's not a matter of having a low pain tolerance, or "not being in charge". You are sick, and the whole point of being sick is that you feel (at risk of stating the obvious) sick. This is a terrible thing that has happened to you (and to all of us who have this disease) but it is *not* your fault, and you should not be criticising yourself or pressuring yourself to feel differently, as if a change of mindset is going to change what your poor gut is doing :-(.

*hug*

Please do think about calling your doctor and asking for help. It sounds like a good idea to me.

Sending you strength and lots of compassion.

Ivy, who has been there too and tears in her eyes for you. And yes, eighteen is too young to have to be so sick. It's not fair. I've been there too.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 9/9/2010 8:31 AM (GMT -7)   

Tears are welling up in my eyes as I realize you're 20 years my junior.  I cannot IMAGINE having had this illness at 18. 

Ditto everything ivy said.

***Hugs & Prayer****

 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/9/2010 8:42 AM (GMT -7)   
I agree with everything said above! But, just to reiterate that you may well be better off in the hospital,
just for a little bit. Bet of luck!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/9/2010 9:18 AM (GMT -7)   
I want to send you hugs! it is *so* hard... and the others are right, 18 is so young to carry this burden. Everything Ivy says is so true... Is there any way you can just let yourself rest up if you aren't going to go into the hospital? Just lay around, watch a movie or 3. And, do not feel bad about the pain pills helping. Sometimes they are the only thing that help me get through some days also. Pain, for me, gets harder to take the longer it's with me. Some people think that I should be used to the pain, but it's almost as if my tolerance drops because I get so *tired* of hurting and feeling badly. So, go easy on yourself. And, like the others say, for me there is a comfort in being in the hospital when I am that bad... Like they said, someone else takes care of you. And, you have no responsibility while you are there other than to rest. If that doesn't work for you, just please give yourself permission to feel how you feel without expecting "more" of yourself. You have enough on your plate without self-expectation beyond what this DD permits you.

Hang in there... I'm sending good thoughts your way!
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 9/9/2010 9:29 AM (GMT -7)   
imissicecream, I started having problems when I was 17 and I remember how hard it was to get through college when I was really sick.  That's great that you are still trying to go.  Even if you have to take semesters off here and there, it's ok.  It took me 5 1/2 yrs to finish because of having to cut back on classes.  Looking back now, I can only say I got through it one day at a time.  During really bad flares when I was bed (couch) ridden, I just did my best to make it through the day.  One day turned into the next and I gradually improved until I got into remission.  You can always hold out hope that tomorrow will be better.  And, if it's not, then the next day will be better.  There is absolutely no shame in depending on pain meds.  I can't function without taking them at least twice each day, sometimes three times.  And I truly watch the clock for when it's time to take them again because they don't usually last 6 hrs.  You got some great advice and support below.  Just take it day by day...come here for support to help you make it through until it gets better. 

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 9/9/2010 9:34 AM (GMT -7)   
You could give it a few more days "just in case", but if nothing gets better very soon I can't help thinking that hospitalisation is better than going through this by yourself.

With regards to your course, can you defer it for a semester if need be?

My sympathies (as useless as they are). Eighteen is a horrible time to be this ill.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/9/2010 11:24 AM (GMT -7)   
hi,

I was 20 when diagnosed. I know how hard it is to be young and sick all the time. First, have you contacted the Disability Office in your school? You should notify them that you have crohn's and see what accommodations they will give you. (missing school, extra catch up time, you may need to get your doc to fill out some forms. Be very specific about what you want and why.)

Also, since it is the beginning of the school year, I suggest you consider switching to online courses if you can. This way, you can work at home and around your illness.

I also think it would be a good idea for you to find some friends who can be supportive and helpful. Try to hook up with other students who also have chronic illness, it would be a great support system.

SCD might be a good idea. I hope you feel better soon!

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/9/2010 12:28 PM (GMT -7)   
I was 23 and a new mother when I was finally diagnosed, but I self diagnosed at 13, so I know how hard it is to be young at sick, trying to do all the normal things while feeling like poo. Please tell your doctor how awful you feel and ask for help. Also let the disability office at school know. Accept all the help that they both can give you, it is not a reflection on how strong or weak you are to accept help when a chronic debilitating disease is attacking you. Let others take some of the burden off of you.

It is hard to be so young and so sick, but I want you to know that it will get better. It is the VERY rare person who doesn't have some form of remission at some point. I know it seems like you won't ever see it. I had 10 years after my diagnosis that were pretty rough, but even in those years I had good times. Since my last resection I have had relative calm. So it does happen. You may have so much damage in you that just needs a lot of healing time. In my case I figure it took 10 years to do all the damage, and another 10 years to un-do it. Who knows how long the Crohn's was in there doing its black magic before you were actually diagnosed. Your doctor WILL find the right medication(s) and you will eventually get some relief. But in the meantime, a little time in the hospital might do you a lot of good.

(((((HUGS)))))

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 9/9/2010 12:29 PM (GMT -7)   
Hey guys, thank you so much for the support. It's so nice to have you all to lean back on when I'm feeling this crappy.
I already took last semester off school...I love being in school, I'm a true academic at heart, and I really wanted to get back in...maybe I was a bit hasty in going back so soon. I have contacted the disabilities department and all of my professors are aware (I talked to them myself as well). They seem to be understanding so far.
I have an appointment with my GP tomorrow. If things aren't feeling better, I will ask to be hospitalized. I can recognize when I need to let other people take care of me/worry for me.
My best friend has severe Reactive Airway Disease/Asthma. We often bond over being different than the other kids our age.

(((hugs))) to everyone. It helps to be able to talk to people who are going/have gone through the same things as me.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/9/2010 5:04 PM (GMT -7)   
One good thing is that you don't have to stop being an academic person just because you're not going to uni. You can use your time at home to explore new interests, to read around a topic, to broaden your general knowledge, and you may well find that you are a better, more efficient and more informed student by the time you do get back to uni.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/9/2010 5:11 PM (GMT -7)   
I luckily never had it too bad when I was in college, but the last semester I was on prednisone nearly the entire time. The closest I can relate is when I was working the month or two prior to my eventual surgery. At least 75% of the time I was in severe pain, but couldn't medicate because I was working with heavy machinery. Taking this hour-by-hour is what worked for me.
Diagnosed with CD July 2007
Currently on Remicade, acidophilus, multivitamin.
Resection December 2009

Amor fati - Nietzsche

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 9/9/2010 7:12 PM (GMT -7)   
Trust your instincts and advocate for yourself. I know sometimes it is hard when you don't feel well, but it's worth it. I am sorry you are going through this at such a young age. They shouldn't have made you wait this long to get the results of your scope. That's ridiculous! Good luck tomorrow.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 9/9/2010 9:20 PM (GMT -7)   
I was only 18 when I was diagnosed (just before my 19th birthday) and for a year prior to that things were pretty bad. My case was different as the pain came on gradually, and I got used to it. Now, many years later, I don't have the tolerance I did then. I figure I dealt with so much pain then, I shouldn't have to now. I don't hesitate to take pain meds if they help me function better.

It's frustrating thinking that you're ready for something, then things go downhill and you can't handle it all. I've been out of work for some time now, and I fear that the stress of starting a new job will cause me to get worse.

Luckily, coming here there are people who have been there and understand the frustration of what's going on. It doesn't make it better, but it does help to know that you aren't alone.

((((HUGS)))) to you.

Let us know if you do end up in the hospital. Maybe it would be good for you, like others have said, to have someone else taking care of you for a bit.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 9/9/2010 10:22 PM (GMT -7)   
A little update- I finally talked to my GI who did the colonoscopy. I have active Crohn's disease in my ileum (and some kind of weird cells growing in my colon that indicate inactive IBD), Celiac disease, a c-diff infection, severe lactose intolerance, and a sprinkle of IBS on top of all that (or so she thinks). Not to mention she suspects adrenal insufficiency, and some kind of cardiac problem as well. She told me that it would be a good idea to go back on the SCD (she even knew what it was without me telling her!), but that I will probably never be completely out of pain. That was a huge bummer. They're thinking about putting me on Cimzia, but she's still not sure what route she wants to take so in the meantime I'll be on Pentasa and entocort.
I started crying while I was talking to her. She's really an amazing doctor, very sympathetic and understanding. This is just a tough pill to swallow. I'm having a hard time wrapping my head around everything and that everything (but the C-diff) is for life. I've known I've had Crohn's for nearly two years now, and I've come to accept that...but all of these other things? Is there an end or will more just keep on coming?
I'm a little upset that it took them a month to get back to me about the C-diff. God only knows what kind of wreckage that's done. However, I think if I get that taken care of, I might feel significantly better. *crosses fingers*
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/10/2010 5:24 AM (GMT -7)   
I'm glad you finally got some answers, I'm sorry they weren't a little more encouraging though.

I'm sure you will feel a lot better when you get the C-Diff taken care of. I have had it a few times and it just does a number on you. It was quite a few years ago, but still I remember being really sick. As far as your doctor saying you will always be in pain, I don't really believe that. First of all pain is subjective and what hurts me may not hurt you at all. Second, the majority of Crohn's patients live active full lives without giving a thought to their disease on a daily basis other than to take their medications so to just say you will always have pain is a bit off putting to me. I have had many times in my 22+ (32+ unofficially) years with this disease where I was pain free. Please don't accept that statement as gospel. You have a chronic disease, but once under control, it can be managed and possibly put into remission so that you will barely have to think of it.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....
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