So thankful to have found these boards

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tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 6/27/2010 5:42 PM (GMT -7)   
Hi- I am new. I am so thankful that I have found this site. I don't personally know anyone with Crohn's disease and I could really use someplace to discuss my problems and questions. In my lurking I have already found so much valuable information and have seen many different perspectives.
 
I am 28 years old. I was diagnosed with CD about 14 years ago. I had a resection 9 years ago, at a time when I was extremely ill and in a really bad place physically. I can report that after I recovered from this surgery I went into remission for about 8 years and I had never been healthier. During this time, I felt so well that I foolishy went off all medication. I was so naive that I thought I was done with Crohn's disease forever. I knew it could come back back but I didn't think that would happen to me. I had grown into adulthood and was having a great time living my life and I never worried about it all.
 
Well, one year ago completely out of the blue- after having zero symptoms for year- I suddenly was hit by extreme and serious pain. I went to the ER by ambulance with no idea what could be going on. When they did a CT they found an obstruction and you could have knocked me over with a feather. I was shocked that out of the blue it had come back, and come back with a vengence.
 
In the past year I have been hospitalized 6 times with 6 small bowl obstructions. I have been on Humira for 3 months, but it doesn't seem to be doing enough. I am also on Pentasa, protonix, zofran, celebrex, entercort, and ambian and tramadol as needed. My doctor has said that he thinks the time has come for a second resection. I do not want to do this at all, but obviously hospitalizations every 2 months are not ideal. I need to do something, I am out of control. I am currently taking a medical leave from my high stress job (unpaid) because I simply can not handle it right now. How do you all handle this, if you are in a similar position? I simply and physically unable to work right now, and I am really taking a hit financially. I do have insurance but I have racked up thousands in hospital bills. I'm sure I am not the only one in this position either! Also, the emotional toll of feeling sick all the time and all the medication side effects are just too much to handle sometimes. I appreciate the support of all of you in advance. It will be good to have other people to talk to who understand what I am going through.

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/27/2010 7:30 PM (GMT -7)   
I'm glad you found this forum too. There are lots of people here who have been through similar things and who can offer advice and support. I'm glad you're taking the time off work.

I haven't had a resection, but I notice that some people seem to feel it was the best thing they've done. So, even though it's hard to face a second one, it might be time.

Welcome to healingwell.
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 6/27/2010 7:36 PM (GMT -7)   
Thank you so much.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/27/2010 7:36 PM (GMT -7)   
Try not to kick yourself too hard, Tulip, because you're not the first, last or only person to have been in this situation. I think many of us who were diagnosed in our teens have tried to live without medications, only to have a *huge* wake-up-call months or years later.

My personal feeling is that there needs to be better patient education for young patients. Doctors need to stress that we're not cured, even if we're feeling better, and that we *must* keep taking our meds if we are to have a chance of avoiding situations like yours. I was never warned about that: were you?

You're very welcome here. I'm looking forward to getting to know you better.

Sorry things are so tough for you right now.

Ivy.
Co-Moderator Crohn's Forum.

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


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 6/27/2010 7:42 PM (GMT -7)   
Thank you. You are so very right about that! When I had my surgery I was 19 and a freshman in college. I had no idea how to take care of myself then, I mean even now I have trouble keeping everything straight that my doctors tell me. I was clueless at that point.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/27/2010 7:46 PM (GMT -7)   
Yep. I felt invincible once I hit remission, temporarily moved to a new town and didn't know how to find a new doctor, ran out of medication and, being young and stupid, decided to do without it.

HUGE MISTAKE.

I think doctors forget just how young and ignorant and silly we can be at 18, 19, 20, 21. Just because we're legally adults, doesn't mean that we have all the info to make wise decisions about our health, and a bit more information and tlc from them would be very helpful.

Rant rant rant rant rant...

But you're right: it's not easy now, and it certainly wasn't easy then.

Ivy.
Co-Moderator Crohn's Forum.

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


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/28/2010 6:02 AM (GMT -7)   
My good thoughts are going out to you and the big guy upstairs.
I have not been on this site too long but find it invaluable. I hope you find the same
Take care
David

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/28/2010 6:10 AM (GMT -7)   
Hey Tulip and welcome to Healingwell. I had the exact same experience. Thought I no longer needed meds and then BAM emergency resection and years to get things back to semi normal. I, like you, learned my lesson the hard way, and always make it a point to tell folks to stay on their meds. Some will advocate for just changing your diet, but I personally feel that diet alone is not enough and that diet and medications are required in order to keep the disease in check. Sorry you had to learn the lesson the hard way like I did. I think you should go forward with the second resection so that you can get your life back. Sending healing prayers and thoughts your way.

Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 6/28/2010 6:14 AM (GMT -7)   
Thanks everyone for the good wishes and valuable info.

JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 6/28/2010 8:33 AM (GMT -7)   

Best wishes to you Tulip. I too find this site invaluable. So many nice people that understand what you are up against or going thru. I look for inspiration when I come to this board and even tho people are having trying times there is always someone to put a smile on your face and realize that life is still good.

 

Look forward to your future posts.

 

JAB

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