New to forum - not new to crohn's

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Regular Member

Date Joined Nov 2009
Total Posts : 26
   Posted 11/25/2009 12:01 PM (GMT -6)   
I am so thankful that I have found this forum.  I have spent quite some time reading through old posts and they have really given me some insight and some good information.  I have an appointment with my doctor today for the results of my latest scope and to discuss medication and possible changes.   Reading through the old threads has made me feel very prepared to go into this appointment more informed than I have in the past.  The forum has also made me realize that he is my doctor and he can make suggestions but I don't necessarily have to follow them, and I am in my rights to question them.  I know I am going to be spending a fair bit of time here.
I was diagnosed with Crohn's in 1990.  I was very very ill, had surgery for a blockage in my bowel and pathology came back as Crohn's.  I had approx 2 feet of bowel removed at that time.  I was in the hospital for 3 weeks and when discharged  was on no medications.  If I knew then what I know now I probably would of questioned that decision.  I have lived with the symptoms of Crohn's but became very good at dismissing them.  I was the mom of 2 young children and guess I figured I didn't have time to be sick.  I think my past medical health could of been better had I been on meds, but that is in the past and I can't do anything about that now. 
about 5 years ago my PMD and I decided that a c-scope was a good idea because of my family history of colon cancer.  I was shocked to find out that my crohn's was very active (guess that explained the extreme tiredness etc) and my strictures had narrowed a lot with inflammation.  My doctor started me on salofalk, both pills and suppositories, and I did start to feel some better.  Since that time my meds have changed and I am not on mezavant, methotrexate, and endocort, folic acid, vit D, calcium and a good multi vit.  I can't say I am feeling great, thus the discussion about the meds today.
Thank you for such a wonderful forum.  From reading the posts I can feel the genuine caring and support that everyone gives and receives.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/25/2009 12:05 PM (GMT -6)   
Hey Knittingmom and welcome to Healingwell. We are glad to have you here, only sorry for the reason you have to be here. I am a firm believer in maintainence meds myself. I learned that the hard way and will never be med free again. It just took way too long and too much pain to get me back to remission, so I have learned my lesson for sure.

Do keep us posted on your doctor visit and what he says. I do look forward to hearing more from you. Again, welcome to our little corner of the world.

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*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 Nov 2009
Total Posts : 205
   Posted 11/25/2009 12:14 PM (GMT -6)   
Hi and welcome (from another relative newbie).

I was curious, you said you lived for several years on no medications and dismissed your symptoms - I think I might be in the same boat. What kind of symptoms were you dismissing? I have a toddler, so there's not much time for me to be sick either!

It's not that I refuse to be on medication, it's that my body refuses. It seems like I always get the 0.001% chance reactions - or, if I don't react, the medicine doesn't help.
CD since July 2007 - prenatal vitamins, vitamin D, fish oil, flax oil, Flora-Q probiotics, pescetarian healing diet
DM T1 since January 2008 - Apidra via OmniPod

Regular Member

Date Joined Nov 2009
Total Posts : 26
   Posted 11/25/2009 1:49 PM (GMT -6)   
Hi there, and thank you for the welcome.

I wasn't given the option of medication after my surgery. They did the resection, then they talked to me about diet and how each person is different and it was basically a trial and error process you had to go through. And also that you might be able to eat something this week and then next week you can't. They talked to me about how my bowel movements wouldn't likely ever be what people classed as 'normal' but that they were my new normal. I would likely have several bms throughout the day and they would be very loose. And then I was discharged.

So when I had symptoms I just sort of dismissed them as I guess this is the way it will be from now on. I now know that I should of been going back instead of just living with these symptoms. The tiredness, lack of appetite, achy and sore, bouts of D, but as a mom I guess we just drag ourselves through it all. In a way I guess I feel like I just sort of fell through the crack of the medical system, partly my fault because thinking the symptoms were my new normal I didn't 'whine' to my PMD.

Regular Member

Date Joined Nov 2009
Total Posts : 205
   Posted 11/25/2009 3:48 PM (GMT -6)   
I think a lot of us slip through those cracks. For example, I was put on prednisone by my first GI doc back in 2007. I remember them telling me some of the side effects, so when I started getting the night-sweats, I called to let the nurse know, but struggled on with it because when I talked with them about it, they didn't seem to think it was a big deal. Then I started noticing weakness if I didn't eat every couple of hours. Again, passed it off as prednisone side effects.... No, it was adult onset type 1 diabetes, probably initiated by the prednisone. (Then I slipped through yet another crack when they misdiagnosed me as type 2 and told my 110 lb butt to lose some weight!!! But that's another story about a different doc making a horrible mistake.)

I think that many of us struggle through symptoms thinking that they aren't significant, because that's the impression we got when we first reported them to the doc. Sounds like we both learned this the hard way - but I am ALL OVER my doc now if I need something.

Hope your appointment goes well. Let us know.
CD since July 2007 - prenatal vitamins, vitamin D, fish oil, flax oil, Flora-Q probiotics, pescetarian healing diet
DM T1 since January 2008 - Apidra via OmniPod

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 11/25/2009 4:02 PM (GMT -6)   
Hi welcome to this FAB site i agree with nanners to take maintanance drugs when i had my 1st resection i was put on meds but by my own choice came off them but this last year i have suffered and will never go med free again i too learnt the hard way in the end Bev x
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

Regular Member

Date Joined Feb 2004
Total Posts : 53
   Posted 11/25/2009 9:46 PM (GMT -6)   
Hi KnittingMom, and welcome to the forum :)
Your story was so familiar to me. I had a resection in 2004 and after leaving hospital was weaned off the prednisone but was given no maintenance medications at all. I had only been diagnosed a couple of months earlier. I was a teenager with a young child. I didn't know what 'normal' was supposed to be and have put up with this ridiculous disease for years.  My gp himself recently said I had fallen through the cracks also, and that I should have been on some form of maintenance medication. Didn't help that my specialist had left the area and didn't even inform his patients. I am only now really starting to try out maintenance drugs.
I take partial responsibility, and I will never let it happen again because the disease has had all these years to fester and I am worse off for it.
Best wishes to you, I really hope you feel better soon.
Female, mid-20's, lives in Australia
Symptoms since 99', Dx 2003, Right Hemicolectomy 2004, Trying to find the magic combination to manage this silly disease :)

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