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tall girl
Regular Member

Date Joined Apr 2009
Total Posts : 68
   Posted 4/23/2009 10:41 AM (GMT -7)   
So as I am reading all of your posts and your signatures describing the medications you have tried (or are currently on) and surgeries you have had and the many problems and complications, I can't help but wonder is this what I will someday face. Before joining this group I thought I had it bad....constant pain, constipation, what seems like a million pills a day, being pricked with a needle so many times I am sometimes sure I can't possibly have any blood left. But know I see I don't have it that bad. At least I haven't had to take more than a day or two off of work or have surgeries. My condition seems almost mild. Did most of you start out like me and then over time progress to the state you are in now? or did it start this bad for you? 
25/ Female DXed Crohn's 1/09
Many diet restictions
Entecort, Pentasa, Zantac, Fish Oil
Still confused and sometimes angry/frustrated
However I am learning to laugh at all this more often

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 4/23/2009 10:46 AM (GMT -7)   
I was diagnosed around the same time as you are, but I got sick in April 08. When it started for me, I woke up one day and I was in as much pain as ever, pain that kept me awake in tears, severe vomiting, D, chills, and so on... Only thing that changed over time was that I also ended up constipated. I tried Pentasa and had a bad reaction to it and it wasn't strong enough for me anyway, so my doctor has been trying Entocort, which seems to be doing the job, but she warned me that I may have to be on it for a while. I'm a bit worried about what they'll put me on after I'm finished with Entocort since I can't tolerate Pentasa. I have taken tons of days off of work and worked from home for about a month while I was recovering, but my work is really supportive about it. Basically we're in the same boat, I can only wonder if some day my disease will progress to the point where I'll have to deal with surgeries and fistulas and who knows what else. It's definitely scary to not know where it will go!

Regular Member

Date Joined Mar 2005
Total Posts : 357
   Posted 4/23/2009 11:03 AM (GMT -7)   
I was diagnosed at 16, and it started out with extreme weight loss, pain and vomiting. They had me on Prednisone to get it under control. Soon after I started 6MP, and aside from mild to moderate flare-ups, I didn't do too bad. At 22 I got pregnant and was in complete wonderful remission (no meds at all) up until I gave birth and stopped breastfeeding. At that time my disease came back with a vengeance and I had to have surgery because nothing would get it back under control. Surgery made a huge difference for a while, but eventually the Crohn's showed itself again. I won't get into anymore details, but if I follow the progression of my disease, it has gotten worse over time. I believe part of that is that certain medications will work for a bit, but then lose their effectiveness over time.
I'm not saying that that happens with everyone, but I'm letting you know my experience with it.
32 year old female... diagnosed with Crohn's at age 16, then with proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, 20mg Prednisone, Bentyl and Percoset as needed... just started Remicade

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/23/2009 11:04 AM (GMT -7)   
I have had Crohns Disease for over 30 years. I had two flares in my first four years with the disease, then went on to enjoy a nearly 20 year remission. During that time I didn't take any meds, ate pretty much what I wanted, and basically lived as if I didn't have the disease. But my remission ended with an emergency resection in 2002. I ended up having to have another resection 3 years later. Those two experiences really opened my eyes to the damage this disease can do if it is not treated. So now I watch my diet, take my meds as directed, and am once again in remission. Life is different now since the surgeries as my body has had to adjust to the changes that occured from the surgery's, but it still is pretty good.

I do usually use most of my sick days every year as you will have bad days even if you are in remission. I find my system is a little more delicate and virus's and such seem to effect us a little harder. But there are plenty of good times too. I still have a fulltime job and luckily have been blessed with supportive bosses.

My one suggestion to you both is always take some kind of maintainence med even when doing well. The inflammation can be going on microscopically and doing its damage even when you feel great. Thats what happened to me ending up in the emergency resection. Good luck to you both!
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"*

Regular Member

Date Joined Apr 2009
Total Posts : 174
   Posted 4/23/2009 1:54 PM (GMT -7)   
I'm with you tall girl, I though I had it bad because really I was the only person I knew that has this disease (never even heard of it until I was diagnosed).. Took meds for a year then enjoyed 6 years of mostly symptom free remission... But this time around I've been more open about it and more accepting of it and by going out and researching it a little I realized I actually have had it fairly good thusfar (knock on wood)... But reading other peoples dealings with it did scare me into getting back to the doctor sooner that I otherwise would have...

As far as angry/frustrated I tried that approach the first time around; this time being openminded and laughing about it seems to be going much better...

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 4/23/2009 1:59 PM (GMT -7)   
The only thing constant about Crohns is that there are no constants. Some patients have strictuirng and/or fistulizing diease early on and need multiple surgeries. Some later. Some not at all. There is a subset of Crohns patients, according to Dr. Haneur at U of Chicago who is one of the top IBD experts, who have stable, level, moderate disease throughout life, with no serious complications. There has been some recent researcjh that shows that just as certain genetic markers can make us more susceptible yo Crohns, some genetic markers seem to play a role in predicting the severity of the disease and its complications. It truly is an individual illness and the only case that really counts is your own as far as knowing whether it will progress and where to.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 4/23/2009 5:43 PM (GMT -7)   
I can't say for certain since I have only had Crohn's for about a year, but I can tell you that mine was really severe initially and I am starting to see a lot of progress. I don't know what will happen really or what to expect, but please, please don't let your expectations be that you will just get worse. Stay positive and be willing to make a lot of lifestyle many have done it and so can you :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 4/23/2009 6:48 PM (GMT -7)   
Well I've had it since 2001 and was told that it was such a mild case that I would never need surgery. I lived life like nothing was wrong, not knowing that Crohns was destroying me inside. I took my meds everyday and thought I was invinsible.That was until last September when I had a bowel obstruction and after many tests was told that I needed surgery. After the surgery my surgeon told me she was stunned how any food had amde it through the pencil thin intestine. She said that if I had not had surgery that emergency surgery was in my near future. She ended up taking out 18 inches of intestine. Not bad for a mild case hey! I pray everyday that this disease does not come back, it is an evil menace.
I know that this disease effects everone differently, this is just how my life is with Crohns. i will not let it defeat me...
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

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

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

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