Flaring after two years of

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Regular Member

Date Joined Sep 2007
Total Posts : 317
   Posted 6/9/2010 5:56 AM (GMT -6)   
Hi everyone,

I can't believe my last post was in 2007 -- I'm sorry to have missed what's going on with everyone. My CD was diagnosed (terminal ilieum) back in September 07 at the age of 43. Like many, I had symptoms for years but was never diagnosed before this. I had a typically rough "first experience" with an 8 day hospitalization and a number of months with follow up medications, side effects etc.

But, then I miraculously felt really really well from a CD perspective -- little or no symptoms. I've had a personally very stressful two years and actually gained quite a bit of weight (not in a good way) so since I was stressed, symptom free and suddenly fat, I self-diagnosed myself right out of a CD diagnosis without consulting my GI (brilliant!) discontinued my Pentasa and 6 MP, and resumed all my crazy regular eating of foods that had previously bothered me -- Diet Coke (4+/day), nuts, salads, McD fries on stressed out days, etc.

So, it will not surprise you to hear that I am now a MESS! A few months ago I had what I thought was a stomach bug, but now realize was probably a partial blockage -- fever, vomiting, diarrhea, pain etc. The acute pain went away but since then I've been having increasingly bad diarrhea, incredible abdominal tenderness, gassiness, bloating, low or no tolerance for solid foods, severe headaches and all over achiness. Exhaustion. Some bleeding too ...

Did I call my GI? No! I was embarrassed because I hadn't been in so long and because I gained weight and didn't want him to see me (again, brilliant, right?).

This week, the diarrhea and discomfort has progressed to an unmanageable point - literally soiling clothes at work, etc. You get the picture. I went to my PCP yesterday and am seeing GI tomorrow. The PCP gave me the (gentle but necessary) "why in the world did you wait so long" speech and started the regular round of things: steroids, Pentasa, Prilosec, pain. She did not order anything but blood tests because the GI wants to see me tomorrow and possibly get a CT.

PCP also told me to go home, get in bed and not move until my GI appt -- or she would hospitalize me. So, I dropped everything, did as I was told, and after just a day, have to admit that I do feel a little better. Staying in bed.

GI tomorrow, but I thought I'd say hello, fess up and reconnect.

Your stupid (and now stressed, fat and flaring) friend,

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/9/2010 10:24 AM (GMT -6)   
First off hugs Glowmoment!! You are not alone, I think many of us thought we knew better than anyone else, and didn't think we needed our meds or a healthier diet. I enjoyed a nearly 20 year remission where I thought I didn't need meds and ate anything I wanted. Well my nearly 20 year remission ended abruptly with an emergency resection. Then I had a now fired GI who told me since I had surgery there was no need to take maintenance meds, so I didn't. I ended up with another resection only 3 years later. It also took forever to finally get my Crohns back into remission. I am now solely maintained on Asacol. I will never be med free again, lesson learned. Sure hope they get you feeling better soon. 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"*

Regular Member

Date Joined Sep 2007
Total Posts : 317
   Posted 6/9/2010 11:06 AM (GMT -6)   
Thanks Nanners -- it's really nice to see some of the same names here and to feel the support.
Official dx September 2007.
Medications: 6 mp, Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
44 years old; single mom to three wonderful kids, ages 9 to 15.

Regular Member

Date Joined Jan 2010
Total Posts : 221
   Posted 6/9/2010 11:59 PM (GMT -6)   
Hey other single mom ... I can relate. I went into a somewhat but not total remission for about four years and went off my 6MP ... and all hell broke loose this fall when I got the swine flu and full flare up. I ended being hopitalized ... only to find out 6 months later it was a bowel obstruction ... how did miss that?>?? I thought it was just a flare .. so, yes, I realize that I'm in denial and a bit stupid. I've had vulva sores for the last two months and ongoing esphogeal / mouth sores/ulcers for 3/4 months and blamed it anything but Crohn's ...

Anway, don't blame yourself. I'm taking small steps. Taking my meds, making a homeade shake everyday that has a great mixture of probiotics and fiber ...

As single moms of three kids each, we MUST take care of our selves first. My OBGYN always told me that in order to meet my kids' needs, I must 'first fill my bucket' ... just a thought. But big hug, let us know how it goes ... L
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 6/10/2010 2:15 AM (GMT -6)   
Glowmoment, many people with our disease have also fallen into the I feel great and don't need my medicine syndrome. I also have been there when I thought that my remicade was not doing a thing for me and went off of everything only to find out how much the medicine was helping. I am still trying to just get back to where I was before and I am adament about maintenance medication and diet use. All too often people feel like they can go with diet alone or medication alone and the story always ends badly. It takes a combination of meds, diet, and exercise to maintain a somewhat normal lifetstyle and sometimes we have to remind ourselves of that.
I hope that you are able to get back into remission by going back onto your pentasa but please don't ever be embarrassed if your have to call your G.I. for help. They will be happy to help you and will understand why you went off your medication. I can almost guarentee you that your doctor has seen this scenerio multiple times and will probably only give you a little lecture about how the Crohn's is always doing damage slowly even when you feel good. You may want to look into a medication like humira, remicade, or cimzia if you do not like having to take pills every day or if your pentasa is not working.

Regular Member

Date Joined Sep 2007
Total Posts : 317
   Posted 6/10/2010 5:47 PM (GMT -6)   
Thanks all for the support... :-)
Official dx September 2007.
Medications: in the midst of changing - now on Prilosec, Pentasa, Prednisone - have used 6MP in past
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.

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