Remission ruined from stressful relationship. Tapered Pred to 30 mg, symptoms back :(

I was in an awesome, solid remission for about 1.5 years. Then I started dating who I later found out was a sociopath. Dated him off and on for about 15 months and things got worse and worse. Wish I would have gotten out sooner. I believe the stress of him and also missing a few doses of my enemas and Delzicol over the course of a few weeks caused me to flare about a month ago. I also had to get anal surgery in August because my colonoscopy this spring showed I have HPV in my colon (no, I've never had anal sex; you don't have to to get it there, even though my now-EX gastro doc did not believe me when I told him this and said I would have had to have had anal sex to get it!). My anal surgeon was awesome and she told me often times IBDers flare after having anal surgery to get HPV warts removed. Surgery went well though, biopsies showed the warts were the lowest-grade chance for cancer in the future, and I felt fine until about 3 or 4 weeks post-op, but I was under tremendous emotional stress and eating like crap, and missed some meds.

I'm seeing a new gastro doctor this coming Monday.

This is basically just a post of me venting I guess. I've never had any problem getting off of pred the other two times I've been on it. I was on 40 mg for two weeks and had no symptoms. I'm now on my second week of 30 mg, and I have started to feel crampy, BMs have increased from 2 a day to maybe 5-6ish. Today I've only gone once, but my stomach just feels kinda crampy. I'm super bloated, I'm guessing from the prednisone. And I'm emotional from the pred and scared it will get worse. Last year I was on 40 mg for three weeks and I ended up getting suicidal after being on pred for about 6 weeks or so. I'm supposed to drop down to 20 mg this Friday, but don't really know if I should.

I'm also in the midst of training for a 50-mile ultramarathon, and I have no idea if all this running is perhaps making me worse. In the past, running has never made my UC act up, but I've had to stop to take a crap in the woods during two of my recent long runs, which I have never had to do before. :(

Thanks for reading, if you made it this far. Thoughts/sympathy/advice appreciated.

Thank you. I am not talking to him anymore and will never ever go back. I don't know what my options are other than imuran, which I don't want.

Thanks guys. Really appreciate the support and kind words.

Alice - So sorry to hear you also dated one. So glad you got free. It's been the scariest, most bizarre, hurtful and confusing experience of my life. At this point, the mere thought of ever dating anyone ever again sends me into panic. I am good on my own for now. Thats awful about that doctor too. I really did have HPV, unfortunately. Guess its pretty common but most people never get any symptoms. I never would have known if not for a routine colonoscopy. The night of my surgery, my ex came over to "check on me" and bring me ice cream and he went into my medicine cabinet and stole some of my pain meds they prescribed for the surgery. He is a "former" heroin and pain pill addict...supposedly clean for 8 years. Right. Then he denied it for about an hour or two despite me counting out the bottle right in front of him. Then when I wrote his close friends and sister worried sick because he was taking drugs, he told them all I made it up and was crazy. None of them even responded to me. He is probably the one I got HPV from to begin with since Im pretty sure he had like 5 other women on the side. :/

I hope so too Sara. Are you using rectals 2x a day? That could help.

Notsosickly - No, but I will start trying twice daily tomorrow. Thanks.

OldHat - Thanks. Yes, I still have Pumpkin. :) Love her more than ever.

Hey pb4! Im so glad you finally responded to a med!! That made me so happy to hear. I will consider it if all else fails. Thank you. And so sorry you married a sociopath. Im very glad I figured him out before wasting anymore time, silver lining I guess.

Hi Serenity! The only good thing about flaring is I get to hear from all you awesome folks! :) So cool you guys remember Pumpkin. :) I hope you are doing well.

That makes sense about the exercise and I think you are probably right. My last flare I kept running whilst on prednisone but I was doing far less mileage than I am now. I didn't do my run tonight, just rested instead.

Hi Sara, thank you, I'm still kinda shocked that finally something helped my CD, then again, it's not like I feel "normal" again thanks to the IBS but I've been working on it with seeing a dietitian to rule out food as my IBS trigger, turns out it's stress, guess being married to a sociopath explains that lol. I"m so glad you were able to get out of that relationship though, and now you know the sociopathic signs to look for in future mates lol...for now of course, just focus on yourself because getting yourself healthy is the only thing that matters (and your pumpkin of course) I hope you don't have to resort to biologic's especially if you don't want to go that route but it's nice to have something that may very well bring you out of a stubborn flare, I just don't want you to be scared of them as so many are. I think a big part of the reason I was ok with trying Humira was because I felt like I had nothing to lose, I developed a recto-vaginal fistula and had no choice since biologic's are pretty good at healing them and mine is inflammation free now (was sad to find out that once a fistula tracts appears it stays for good and it's a matter of keeping inflammation at bay to keep the fistula at bay, crapty deal but that's life, unfair as usual.

I hope you like your new GI (good help is hard to find) and he's able to help you with this flare asap!!

Sorry you are going through this. I hope you feel better soon.

I'm sorry you're going through all of this, Sara. It's crazy how stress plays such a huge factor in our disease. I had the same question as you, my symptoms are returning and I really want to exercise. When my flare finally started to end, exercise and stretching felt great. But now that our symptoms are returning I think rest might be the best option..

26 year old male diagnosed with ulcerative proctitis mid 2014, pancolitis after a colonoscopy in 12/2014.
Mid 2014: Initial flare, minor no pain, just blood: Remission with Apriso and Rowasa, switch to Colazal after insurance issues.
12/2014 Second flare, pretty severe: Remission by mixing Apriso and Colazal and Rowasa.
Continued with Colazal and Rowasa and was in remission until very severe flare mid July 2015 where I lost almost 30 pounds.
7/20/2015: 60 mg prednisone started
8/6/2015: Remicade infusion #1
8/18/2015: Remicade infusion #2 (Next is scheduled 9/16/2015), plan to start 6mp after prednisone taper
8/21/2015: Sigmoidoscopy performed, GI said there was no hope for me and I needed immediate surgery.
8/21/2015-9/11/2015: After Remicade infusions, massive dietary changes, switch from Colazal to Lialda, and active dose of VSL#3, I started to get better and gained back about 15 pounds.
9/12/2015: Symptoms begin to return with mucus and tiny amount of blood.
9/15/2015: Back to the emergency room because of pain, I don't take pain medication but did this time to make my parents happy.
9/16/2016 (today): Remicade infusion #3 scheduled.
Currently taking 4 daily Lialda, SCD diet, 60mg prednisone, vitamin D, Canasa morning, Rowasa evening, VSL#3, turmeric, SF seed butter and spinach, eating 4000-5000 calories a day and have gained back 10 pounds.

Post Edited (godwarrior) : 9/16/2015 8:16:54 AM (GMT-6)

Hi Sara...hugs to you and Pumpkin :)

I agree with OH about taking it easy during this flare considering what you've been through......yes, pushing your body as you are will definitely tip the scales not in your favour. Make a mental balance check list of how much "currency" this will cost you....should you not take a serious break from a perceived goal.

GET WELL so you can regain a stronger footing to move forward. Their are always other running marathons. You've just emerged from one (of a different kind)

q

Hope all goes smoothly...keep us posted how you're doing.

q

Thanks guys! Feeling great again today. Will keep you updated.