This isn't a good sign, is it? (I'm 1.5 months from resection surgery)

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Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 3/25/2010 7:05 PM (GMT -7)   
My joints (knees) have been hurting for about a week... but I thought maybe I just did something to aggravate them. But yesterday, I noticed I have not 1 but 3 genital sores that came up. That's my #1 sign that I'm about to flare.
The GI told me that even with the resection, I may see my disease manifest itself in other ways - joints, sores, etc. Can you get that sort of stuff without intestional activity?
I am not on maintenance meds yet - I see him next week to get that script.
Is this normal to have manifestations so soon after surgery? Is this a sign that I won't reach longterm remission? Or can a maintenance med keep that sort of stuff at bay?
I'm really discouraged. I feel like I've finally reached a point where I thought the surgery was worth it (it was not pleasant) and now I'm seeing signs of disease activity again.

Regular Member

Date Joined Aug 2008
Total Posts : 190
   Posted 3/25/2010 7:12 PM (GMT -7)   
I would try and contact your GI to get that prescription sooner than your appt. Or get you on something so it doesn't progress. Hope you get feeling better
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 4x/day, 500mg Vitamin C, 1,000 I/U Vitamin D3, 1 Florastor 2x/day, 1 Nature's Way Primadophilus Reuteri at bed time.
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 3/25/2010 7:18 PM (GMT -7)   
I'm sorry you are seeing signs so soon. I would give your doctor a call and see if you can get in to see them sooner. I had symptoms come back quickly after one of my resections too, so I have been there and I know how disappointing it can be. If you get on some medication you may be able to stop things in its track.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Oct 2008
Total Posts : 1343
   Posted 3/25/2010 10:40 PM (GMT -7)   
It's odd he hasn't put you on maintenance meds yet. I restarted Pentasa as soon as I was home from the hospital. I'd call and see if I could get a script tomorrow.

Hope you feel better!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/26/2010 6:46 AM (GMT -7)   
I agree with all the above, don't wait, go ahead and call the doc and let him know whats going on. I also agree in asking him for maintainence meds, they might help to slow things down quickly for you. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 3/26/2010 8:13 AM (GMT -7)   
I had symptoms right after surgery too and a few short months later we could see new crohn's disease where they did the surgery in my TI.
No way to tell for sure but I sometimes wonder if cders get sick so soon because the surgeon left some cd in there, even microscopic cd.

Aimee =)
Veteran Member

Date Joined Jun 2004
Total Posts : 1020
   Posted 3/26/2010 10:45 AM (GMT -7)   
Thanks, all. He is out of the office today but I will call first thing Monday morning.

His original thought was to give my body 6 weeks without maintenance meds because he says they slow down healing. He did keep me on 5mg prednisone, but I typically don't see much change from steroids unless they are high doses so I doubt it's doing a bit of good.

He also said he's going to scope me 4-6 months from surgery point since the surgery showed how fast moving my disease was (which we didn't realize). I'll see if he feels like we need to go in earlier than that.

Surgeon said pathology reports said the edges were "clean" and he was confident he got it all. I really don't understand it all.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 3/26/2010 10:55 AM (GMT -7)   
LET us know what doc says kk
take care
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

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