Im real afraid.

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debilitated
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Date Joined Jan 2010
Total Posts : 448
   Posted 3/1/2010 6:49 PM (GMT -7)   
I just got back from my doctors and I was told that surgery is a 100% guarantee in my future. Whether somethin bad can happen like an obstruction can happen tomorrow or even a year from now. Im real depressed.

I was givin a script for Methotrexate, Zofram and Folic acid 1mg.

I think i possibly have a cold or infection and afraid to start the medication.

I don't even know what to do. Im eating less and im ALL OVER THE PLACE.

sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 3/1/2010 6:52 PM (GMT -7)   
Hang in there... I'll keep good thoughts that you tolerate the mtx and it puts your Crohn's into remission, or at least helps some! I've only had fistula surgery... been avoiding an ostomy, which is what my surgeon and old doc wanted to do. (That's part of why I switched docs) Surgery scares the heck out of me too, though so many on here have been through it and live to tell.

I had my shot today, and I just started a cold yesterday. I'm hoping I don't get worse than I would have, but my Crohn's is worse than a cold... Have you asked your doc or pharmacist about whether to start the mtx or wait?

Sending you good thoughts...
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


isergodur
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Date Joined Jan 2009
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   Posted 3/1/2010 7:09 PM (GMT -7)   
Relax. We all have something in our future we cant control but we have to live with it.

We could all die tomorrow. But we still have to go on with our live like nothing is going to happen :P

I would see a psychiatrist to help you coping with all this. That is what I do.
It helps alot, and happy thoughts :)
25 year old female from Iceland.
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they don't know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Humira, Asacol, Cipralex and Cerazette.
Past medication Remicade, Imuran, Entocort
My wonderful dogs :) ~ www.poodle.is ~


debilitated
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Date Joined Jan 2010
Total Posts : 448
   Posted 3/1/2010 7:15 PM (GMT -7)   
isergodur, Thanks for the disrespectful comment.

isergodur
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Date Joined Jan 2009
Total Posts : 831
   Posted 3/1/2010 7:38 PM (GMT -7)   
debilitated said...
isergodur, Thanks for the disrespectful comment.


I am sorry I did not mean to be disrespectful.

Just saying what works for me.

I would stop living if I would think about the future. Just one day at a time :)
25 year old female from Iceland.
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they don't know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Humira, Asacol, Cipralex and Cerazette.
Past medication Remicade, Imuran, Entocort
My wonderful dogs :) ~ www.poodle.is ~


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 3/1/2010 7:53 PM (GMT -7)   
I don't think it was meant to be disrespectful. One time, a couple years ago, my doc suggested in a somewhat terse tone that I see a therapist. I took offense too... It's hard to feel like we're not coping. I finally, after 8 years and 3.5 in a straight bad flare with no med working, agreed to try an antidepressant. It's helped a lot. I think everyone on here understands the fear you feel. It's terrifying to live with this disease at times. Even though there are worse diagnoses, Crohn's is a rough path. A very high percentage of patients undergo surgery during their Crohn's lives. Nothing can make it less scary until we've passed through it and seen that we are strong enough to make it.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 3/1/2010 8:11 PM (GMT -7)   
It is hard to try to relax yourself, but it's the one thing you need to try to do.

Like you said, surgery could be next week, or next year. I've had so many obstructions, I can't count em. For quite a while, I would worry about when it would happen again...then I finally just told myself that I had to live for now, and not worry. I don't say that meaning it's easy not to worry, but you have to focus on the good things, not dwell on, or worry about what may come. It doesn't help you enjoy the life you have, in fact, it dampens your mood and makes you unhappy.

If you do come to the point where surgery is imminent, deal with it then, and everyone here will be here to help you when you do have to deal with it. Don't waste time now though worrying about when and if it'll happen-it won't change the future worrying about it!

Stress impacts us way too much, and can make you feel so much worse, so you have to remind yourself any time you're worrying or stressing that what will come will....and until then you can't do anything about it.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/1/2010 8:19 PM (GMT -7)   
Thanks Becky. Thats actually 100% the way i think. The thing is, I just got my script for MTX.
Its all i got. Hes giving me 6-8 weeks and thats it.

You think I should go to surgery after that? Clinical trials? I kind of want to go in when I NEED to. I never had an obtruction before anyway.
which is why im confused about surgery. I seen the pictures myself. Its as think as macaroni noodles. lol.

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 3/1/2010 8:23 PM (GMT -7)   
Wait 6-8 weeks from now, then see what you need to do...it's all you can do right now.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/1/2010 9:52 PM (GMT -7)   
Debilitated,
 
1. Nothing wrong with being afraid.
2. Be Cool. smurf Nothing has to be decided Right Now.
 
3.Seriously MTX is about 5th down on the gun list. You still have a couple drug options (and they are researching more every day), before you have to face surgery. Granted surgery is pretty much going to happen in your lifetime (just fyi pretty much the same for all of us who have severe crohns), and the good news is that you have a heads up about it. You can be prepared. Cause let me tell you it is alot easier to do surgery (and recover from it) when you are "ready" for it, vs. when you have a very short period of time to prepare especially if you are swearing during most of this time because you cannot get your bleeding to stop, and you don't even have clean undies with you and are covered in a layer of sand.

There has been research, and take it with a grain of salt because I have no idea how in the world they came up with this because I just read the abstract, that generally with severe crohns that there are 2-3 surgeries during a lifetime. Usually one within the first 10 years. The good news is that alot of it can be done by lapscopy now.
 
4. I am also a BIG believer in therapy for chronic illness, because I certainly have depression related to a medical illness. It is certainly nothing to be ashamed of and you really are offending me if you think it is. I have been in the combat zone and let me tell you I would almost take the bullets for awhile compared with having to deal with horrible this disease can be. I have almost bled out due to this disease a couple of times. Seriously you can deal with bullet wounds (caveat-as long as they are not lethal), you can deal with broken bones, tissue can heal, and at the very least you eventually stablize. 
But with crohns is seems like a constant downward spiral sometimes, and given where it seems like your head is at you might want  to try a chronic illness therapist (seriously it took me about 5 before I found one I could really get along with, who's mother had also died of ovarian cancer, and had served), because it might just help.

I assure you the suggestion of chronic illness therapy is not meant to be disrespectful, it is meant to give you another tool in the arsenal against crohns. It really does help for me too.
 
Take Care,
Navy
 
P.S. You can deal with this!yeah
Frankly I take courage from those who have really dealt with this for a long time, and thanks to RandyNoGuts and a couple of the other folks who really give me alot of perspective.
 
Please do not take this as being uncompassionate, but more as a hurrah you can do this! 


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 3/1/2010 10:03:09 PM (GMT-7)


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 3/2/2010 4:15 AM (GMT -7)   
I agree with MMMNAVY all the way. I have had surgery but it was only after nearly a year of having constant flares and quite frankly I thnk they were sick of seeing me so many times in the emergency room! lol they all knew who I was by the time I'd finished!!! I think we all have to take it one day at a time, and even an hour at a time when we are flaring badly.
There are so many times recently I have thought to myself, once I have another scope, I know what the decision is going to be, another surgery...but I have sort of resigned myself to the fact that what will be, will be.Hope fully it will be more positive and they won't mention surgery, yes, I'm afraid too,and I think we all are at some stage, it's natural to be afraid about whats going to happen in the future, but get past today first!
I think if we worry too much about things, the longer it takes for anything to help with the disease, try and relax, enjoy life as you can, try and make things easier for yourself not harder and do speak to someone about your fears etc it does help to get it all out, rather than keep all the emotions bottled inside, and I dont think it has to be a psychiatrist either, just someone that will listen to you.
Good luck and hope you get through !
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/2/2010 4:22 AM (GMT -7)   
thanks Guys. Im too thin, I easily hurt myself because of it. I really am thinking about it. I'm also going to probably try the methotrexate first. If this doesnt work I think I am REALLY going to consider getting admitted for 2-3 days of good nutrition and than possibly talk with the recommended surgeon about lacroscopy.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 3/2/2010 5:57 AM (GMT -7)   
Hey I kinda know what you are going through. I've been on every medicine there is pretty much over the past 15 years, including the last one which was a trial drug. I've gotten pretty much immune to everything. I wouldn't say my crohn's is really THAT bad, but I did have a lot of pain and bleeding and I have to be careful what I eat. After the trial drug didn't work my doctor said surgery to remove colon. I was pretty upset about it knowing I may have to live with a "bag" the rest of my life. The last thing he suggested is the MTX, which I am currently on as well as 60mg of prednisone. I'ts holding me over, but not %100. I've weighed the pros and cons of the ostomy and I am leaning more toward it. Doctor said I wouldn't really have crohns anymore since its only showing in the colon and once that's gone I will have 10 times more engery than I have now and can live a normal life.
The only thing I am worried about is that I have a very physical job where I am lifting hundreds of pounds a day and I am working on extension ladders. I would need to take a lot of time off work and can't really afford it. So that's what I am working on right now is the financial end.
You may want to see if you can get a free consultation with the surgeons just so that you can ask them all of the questions that you may have. That way you can decide whether you want the surgery or not.  I do hope the MTX works for you.
Good luck and hang in there.

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 3/2/2010 6:09 AM (GMT -7)   
You want scary.  I was diagnosed when I was 15.  Orignally the doc thought I might have Ulcerative Colits.  My thought was I am young, how can I have an ulcer (I had no clue what UC was).  After the test was done, I was told I had CD and that there was almost a 100% chance that sometime in the future I would have surgery.  So here I am a 15 year old, spending a week in a hospital, going through bad test, being told I have a disease I know nothing about and then being told one day I will need surgery.
 
Long story short, 21 years later, I have still not have surgery.  Point being, drugs do sometimes help.  I think some doctors don't know enough and just want to cut it out.  I don't know your situation 100%.  What meds have you tried.  Is MTX your first drug?  Have you tried Prednisone, Remicade, 6MP?  From you description, you are in bad shape so you might need strong drugs.  But to say, forget the drugs lets just cut....I don't know.
 
Debilitated...don't worry so much.  If worse case you have to have surgery it isn't the end of the world.  Check out these boards.  There are plenty of people here that have had surgery and function very well now.  Also, all of this can cause depression.  It is ok.  We all go through it.  There is no shame in seeking help...your not crazy.  This disease causes so much pain both mentally and psyically (sp?).  It is ok to be scared and worried.  But remember one thing...it isn't the end of the world.  You will get through it.  And we are all here to lend support and an open ear.
 
Good luck and feel better.  Let us all know how everything turns out.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/2/2010 7:36 AM (GMT -7)   
java, no effense but thats not scary to me. I was dx'd at the age of 13. I have been on remicade, humira, cimzia, 6-mp, all steroids galore. Xifaxan, flagyl. you name it.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/2/2010 7:45 AM (GMT -7)   
OK I will tell you that I have lupus like stuff from the a-tnf's (remi/humira/etc) and mtx (25mg shots) is the only thing that even remotely brought me close to remission.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 3/2/2010 7:48:40 AM (GMT-7)


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/2/2010 7:49 AM (GMT -7)   
MMMNAVY, I got 25mg also. Along with the zofran and folic acid. Anything you can recommend to make it easier for me? side effect wise or preparation?

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/2/2010 8:11 AM (GMT -7)   
I actually took several months for me to get the full effect, but it does help eventually. Which makes me wonder why your GI is so attached to six weeks?
Did you get the melt away zofran?
I actually take 5 MG of folic acid because I have been on it for several years now, but you will figure out the right dose for you.
I also take b-12 injections, and a perscription chewable prenatal vitiman (for the iron content).

Are you having joint/bone pain problems?

You will be a bit tired and have a bit of an upset stomach. You will learn that you will need to take it easy for about 2-3 days after the shot, but you also might have a much faster recovery time then I do. (I cannot remember how old you are, but I am remembering correctly you are younger then I am.) Just be very gentle with yourself just before and after the shot (be prepared to do nothing the next day), it does take a while to aclimate to the med. It really is not bad (compared with the anti-tnf) for me. A heated blanket is also something to think about if you are having joint pain/ or a fan if you get the sweats.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 3/2/2010 8:12 AM (GMT -7)   
Try drinking lots of water on the day of the injection.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 3/2/2010 8:19 AM (GMT -7)   
I think what JavaJay is pointing out is that he was told he needed surgery and then did not end up needing it, in like more then 21 years. Like I said it is pretty amazing to go 10 years dx without surgery if you have severe disease.
 
You will get a yellow spot on your belly near the injection site. 
 
I think hydrating is a very good idea (water, not fake crap like crystal light or soda. No bull I actually drink a full gallon of water every day).
I do also use ginger ale and gatorate too the day after.
 


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 3/2/2010 8:26:08 AM (GMT-7)


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/2/2010 8:52 AM (GMT -7)   
Thx for the multiple additions to my post navy, I love Gatorade and I drink Crystal Geyser Spring water all day. I love it. I am going to drink a bottle of water, take my zofran and 30 minutes later to the injection. Continue to stay hydrated throughout the day. I am almost thinkin' about doing what a lot of people do here and take it at night but what if i get no sleep?

Sometimes im used to the garbage, and i dont want to wake up with a hangover. Mornings are the start of how my day usually is throughout.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/2/2010 9:01 AM (GMT -7)   
I usually take mine at 3 p.m. on Friday. That way I have nothing I have to do that weekend.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 3/2/2010 10:12 AM (GMT -7)   
Hi.delibitated,I can understand how you feel I too now fear for my future, more so as I have been given a temporary stoma after my last surgery which I wasn't expecting and fear that ill end up going down that route again I really don't think I could cope with another one. I try to look on the bright side more often than not, but this thought often pops up in my minid of what if.Not everybody gets a stoma when they have surgery this is just my fear for my future Hopefully the methotrexate will work for you, and surgery won't be for a long while yet. Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/2/2010 11:42 AM (GMT -7)   
Is it ok to take methotrexate while you have a cold. Im very congested. The back of my head hurts and neck hurts when i blow my nose. even when i swallow my head hurts. Going to get some Decongestion meds.

I dont want to take mtx if im sick but i want to see if it helps my crohn's i guess.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/2/2010 12:44 PM (GMT -7)   
You should probably run it by your doctor if you should take the shot or not since you are sick. It might be best to wait until the doctor advises you what to do. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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