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CDfreesince93
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/4/2009 4:22 PM (GMT -7)   
Just wanted to introduce myself. I am 41 and was diagnosed in my early 20's with CD after many mistakes and blow-offs. In 1992, at the age of 25, a wonderful dr. in Philadelphia finally diagnosed me but by then the disease was fairly advanced. In February of 1993, I required an emergency hospitalization and after many awful tests and 2 weeks was found to have a perforation of the small bowel. I had a resection after removal of my terminal ileum and cecum a couple of days later and left the hospital 10 days after that open surgery. Recovery was difficult, but mostly psychological because it all seemed to happen so fast and I was so young!! 11 months later, I was married, and 10 months after that I delivered my first child, a healthy boy (over 9 lbs which I swear was due to the remaining steroids lingering in my system - I don't think they EVER really leave you!!). I now have three children.

I found your site after doing a search on nutrition and felt compelled to join and comment, but mostly to give HOPE!!

I have been in remission since my resection in 1993 - It will be 16 YEARS on March 12!! I currently have been off ALL meds for 5 or 6 years but before that was on Pentasa. I do take Bentyl for occasional stomach cramps due to accompanying IBS. I do experience frequent bouts of D that I feel are mostly related to diet(which is why I was researching nutrition on the web!). I am lactose intolerant and must avoid alcohol and very spicy foods. Recently, I have started to add much more fiber to my diet and have never felt more normal.

I am so happy I found this forum because I have never known anyone else with this disease!! I would love for all of you to pick my brain and hope you allow me to share with you my experiences over the last 16 years - including marriage, intimacy, pregnancy, child rearing (my oldest is 14 now and my youngest is 6), medical care, and anything else you can think of. turn

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 3/4/2009 4:34 PM (GMT -7)   
Hi Congrads on your upcoming 16 years and welcome to Healing Well .Sounds like you have been busy over that time and it sure goes by fast.. it is great to find others that have so much knowledge and caring ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/4/2009 6:37 PM (GMT -7)   

Hi and welcome to Healingwell.  I once enjoyed a 20 year remission.  During those days I pretty much lived as if I didn't have Crohns.  Could eat anything I wanted etc.  I did my remission med free too, but I will tell you I will never do that again.  My remission ended with an emergency resection, not a pleasant ending.  While I was busy getting on with my life, the Crohns was still in there microscopically doing its damage until I completely obstructed.  The only Crohns meds I now take is Asacol (sister med to Pentasa).  I like you had 3 children, and now have 5 grandbabies.  So like you I was able to live a relatively normal life. 

I am again in remission, but because of two resections only 3 years apart, life is a little different now.  I can no longer eat anything I want, became lactose intolerant, no alchohol, no red meat, and live on a low residue diet all the time now.  But I am not complaining, because unlike many folks on these boards, I have it way better than most.  I am lucky that my Crohns has been mild most of my life.  I hope I go on to have another long remission.

Again welcome to Healingwell!!  You will find alot of wonderful and supportive folks here who are trying to live with this darn disease just like you and me.  Look forward to hearing more from you!

Gail *Nanners*

 


Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 3/4/2009 8:17 PM (GMT -7)   
Regarding your lactose intolerance, I too was lactose intolerant but taking a probiotic called primadophilus reuteri made by natures way has aided me with that, it also aids with high cholesterol (if you have that issue, if not it's still fine to take) and with vaginal health...IBDers tend to have bacterial overgrowth, so a good probiotic daily and indefinitely (flaring or not) is essential and has benefits.  BTW, pred actually does leave your body...my first baby (before CD) was also very large, with my second one being only a little smaller, that's common, to have your first baby be the largest one, of course it's not written in stone, but it's more common than not.


:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 3/4/2009 9:43 PM (GMT -7)   

Welcome CDFree

It's nice to meet you and I enjoyed reading your well written intro. I am in remission from Crohn's and was tentatively DG'd (diagnosed) in 2002, with a scope DG in 2003. I had several minor flares and symptoms that I remember from age 5, and a moderate flare in my 20's that included 6 inflammation induced miscarriages in 7 years, and have 4 beautiful grown children.  


  Never go faster than your guardian angel can fly! Be Patient And Tough, Someday This Pain Will Be Useful To You I get by with a lotta help from my friends!    
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!
                                                                                    Margie11


CDfreesince93
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/5/2009 6:21 AM (GMT -7)   
Thank you all for your warm welcome. I also suffer from joint pain Margie11 and feel much older than my 41 years, but I have had a dexascan and no major problems have been found. I'm sure it is just part of the disease that lurks in my body and maybe some bone loss from the steroids. I do have periodic colonoscopies and so far they have all come back clean - last one was about 3 years ago. I have not sworn off meds and will gladly resume if I sense that a flare is beginning. My biggest worry is adhesions and what a mess it must look like in there with all that scar tissue just waiting to strangle my bowel or some other vital organ!! I am thankful for every moment I live disease free and believe that having this has made me a better person. I have known my husband since I was 16 and we were married the year after my surgery. We did break up at one point just before our engagement because I think he was having a difficult time with my limitations and the lifelong implications of having a spouse with a chronic illness. In retrospect, I think that was a good thing and helped to make our eventual marriage stronger. He has been with me through the worst times which were before we were married and must have come to terms with all of it because we did eventually get married.

I think all couples face struggles, we just knew about ours early on. Who is to say that after people get married they will not face similar adversity - almost everybody does. Whether it is illness of a spouse, child, or family member, or financial struggles, etc. For the younger ones out there - don't ever let this disease keep you from fulfilling any dreams or hopes you may have - relationships, marriage, children, a career, travel. As you get older, you get past the embarrassment and realize that this is a part of you like your hair or eye color. It becomes an important part of who you are. I found once I stopped being angry about the fact I was damaged, and accepted myself - disease and all - I was much more peaceful about the whole thing.

Nanners, I am interested to hear the circumstances behind your first relapse after your 20 year remission. Were you still following regularly with a GI doctor? Di you have any routine tests like bloodwork, scopes, etc.? Did you have any warning signs before your emergency surgery? Do you feel that your osteoarthritis and fibromyalgia are an extension of the CD or something separate?

One other thing, I did have an eye problem a few years back. Out of nowhere I developed iritis, an inflammation of the iris in my eye, common in CD people. Thought this may be the beginning of the end of my remission but it was treated and went away. Doctors kept a close eye but nothing else developed. That is the kind of stuff that makes me anxious - the stuff that comes out of nowhere with no warning.
41, diagnosed 1992 (25), resection 1993, remission for 16 years, no current meds


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/5/2009 7:31 AM (GMT -7)   
Hi again CDfreesince 93!!! During my 20 year remission I lived as if I didn't have CD. Didn't see GI's, take meds, nothing. The only warning signs I had were 3-4 bouts with what the ER told me was gastritis. These occurred in the last 5 years(+/-) before my emergency surgery. Now I know they were at the very least, partial obstructions. Because when I went into the ER with pain b4 the emergency surgery the pain was exactly the same as my prior ER visits. Only difference was this last one, got better like all the others had and was relieved with pain meds, BUT.........came right back the next day and I had to go back to the ER. I think they did more tests, and discovered the obstruction.

Yes my fibro and osteo are directly related to the CD. My rheumy says many of us go on to develop these conditions. Actually they give me more grief now than my CD does:)

Hope that helps.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CDfreesince93
Regular Member


Date Joined Mar 2009
Total Posts : 20
   Posted 3/5/2009 8:07 AM (GMT -7)   
Thanks so much - that does help and there is hope for me yet!! I have religiously followed with my GI doctor. I go once a year if I am experiencing no problems and they do routine bloodwork, etc. to check for inflammation. I have a scope every 3-5 years, although this last time he said 10 years as long as I was still symptom free. If I feel unwell he will see me sooner. I have no pain, but do have D and occasional cramping and feel this is very much related to eating the wrong foods, especially those with a high fat content. In addition, I have been left with urgency issues so when I have to go, I better be near a restroom. I also find that it takes me longer to overcome illnesses like stomach viruses or URI's. Like I said before, I do have joint pain and tire more easily so I need more rest than my counterparts the same age who do not have chronic illnesses.

Your comments, though, have made me reconsider my choice to discontinue medications. Perhaps this was unwise. I will discuss it again with my doctor at my next visit. It sounds as if you feel that if you continued to follow up and take medicine, you may have avoided those surgeries.

Thanks Again,
Kim
41, diagnosed 1992 (25), resection 1993, remission for 16 years, no current meds


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/5/2009 8:17 AM (GMT -7)   
Just wanted to say "HI" and welcome you!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, B-12 injections every 8 weeks.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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