New member looking for advice/encouragement

I've read many posts on here about UC over the past 3 months since struggling with my second major flare and haven't found any story like mine, some similar I suppose. But I am hoping someone out there will have advice for me, as I just don't know what to do next with the course of my disease and am feeling so, so hopeless.

Here's me story:

Diagnosed at the age of 21, looking back, shortly after starting to drink alcohol really for the first time in my life. I definitely think it's a trigger for me. I didn't respond to any mesalamines - Asacol didn't work, Lialda didn't work (even though my Doc insists I stay on it and I do), enemas never worked. Did a short course of Prednisone and quickly flared after stopping. Did a long course of Prednisone and started 6MP. Took months and months but eventually I did achieve remission and from July 2011 - Sept 2013 I FORGOT I even had UC, that's how great I felt. Still took my 2 tabs of Lialda and 1 tab on 6MP daily like clock work, never stopped.

I will add, I was on and off birth control from age 18-21.

So that brings me to this past September - I got married. I was honestly living the dream life. Dream job, dream fiance, my dream wedding was days away. Felt UC pain a couple days before wedding, and sure enough 2 days after wedding was bed ridden with pain and diarrhea. Was about to cancel honeymoon, but with my Doc's encouragement I took a bag of meds including Pred to Barbados for 10 days and never used any of them (I call it a bridal miracle). Returned from honeymoon and was immediately sick. Of course, I drank the whole honeymoon (bad mistake), but what I really think caused my flare up was stopping my birth control 2 weeks before the wedding! I was on the Nuva ring for at least 4 years. I think the stress of wedding plus hormonal fluctuations did it.

I lasted until December trying to eat soft foods and de-stress, plus steroid enemas, in hopes I would go back into remission and we could try to get pregnant. Nope, I ended up very sick and had to stop working for 5 weeks plus Prednisone and starting Remicade. I went back to work 2 weeks ago and after feeling great since the beginning of January, I am once again bleeding and having severe abdominal pain. My doses of Remicade were Dec 26 and Jan 10. My doctor wants me to wait until my next dose which is Feb 7th. My UC is so aggressive, I don't think I'll last that long! I was tappering Pred and noticed symptoms when I got down to 10 mg. Per my Doc I am staying on 10 mg until Remicade infusion #3. I'm so worried the Remicade isn't working, I just don't know what is left to try. I am still on 6MP and Lialda. I'm thinking about starting the Nuva Ring again in hopes it will even out my hormones, as I notice I always feel worse at ovulation (when estrogen peaks) and when I noticed symptoms a few days ago it was right around my ovulation day. It's so depressing because we really wanted to get pregnant and I feel like maybe it's just not in the cards.

I really think hormones are the root of my UC. I have been strict paleo since Christmas and it's super depressing that not even that helped. My best friend also has UC and went into complete remission while pregnant, so I wonder, should I go against my Doc's orders and chance getting pregnant will make me better?? Do you think it's normal for the Remicade to not work until the third dose? Thanks for reading my whole story. I'm just devastated that meds aren't working and I've spent the half of my first year married being lied up in bed with my poor husband taking care of me. In sickness and health I guess....


Foxy13

Hormones definitely do suck! And even you mention two different pregnancies having a complete different effect on you. I am definitely leaning towards going back on the Nuva Ring and seeing what happens. I can start it in 2 weeks. I'm just annoyed because I feel like the same thing will happen when I drop it again, you know? So I guess I'll just have to try to get pregnant right away when I drop it. Good luck to me with that... ugh.

I have the book Against All Grain - the author had a very similar course as me with UC and has been in full remission with Paleo, no meds at all. SCD was more complicated, that's why I went this route. I suppose I can try SCD. I do think certain people respond better to certain diets, I just don't know how to pick one! I've read of UC sufferers going vegan and improving.

I don't think so about polycytic ovaries or other metabolic disorders, but why do you ask? Funny you mention that because since stopping BC I have developed the WORST acne I've ever had in my life and it's not going away. All over my favce, neck, chest, and down my back. I've never had acne. I thought maybe it was the Pred as it's worsened in the last month. It's disgusting.

It can take Remicade up to the fifth dose to kick it. I really hope it works for you...you've had it rough.

I just wanted to put my two cents in on the pregnancy thing. My sister had UC and flared horribly while she was in her 5th month of pregnancy. My nephew was born pre mature at 27 weeks as a direct result of her UC flare. All turned out well thank goodness but it was a bad time and the baby spent 3 months in the hosptial. I'm happy to say he's now 22 and 6 feet tall! Getting pregnant while flaring in my opinion is a big risk. I would try and get stable first.

I wish I could be more help. I went thru all the meds and ended up having j pouch surgery (so did my sister) which has been a blessing. Sending you good vibes that the Remi helps you.

Foxy,
I never got sick while I was on Remicade (I was on 6mp too) and I had two school age kids bringing home every bug from school! Go figure.

Yes, surgery is scary. I was scared out of my mind but I was out of options and took the leap of faith. I had my sister to lean on since she went through the surgery way before me. Happily it turned out really well and I love my j pouch. I am UC free and back to normal (a new normal). I don't have a restricted diet and use the bathroom 4-6x a day with no urgency. My sister has had her j pouch for 21 years now with no issues. She's the same as me...no restricted diet and she actually uses the bathroom less than I do. I did leave surgery as a last resort though. The only drug I didn't try was Humira. I was too sick at that point and had to move forward with the surgery. You have options left so keep positive. :)

I think that if you start the Nuva Ring again and get into a stable remission while using the ring PLUS REMICADE then you should be able to come off the ring and not flare. At least that would be my hope. And if you start to flare you can modify the remicade dose/frequency to stop the disease before it goes crazy again. Just my theory, it's worth what you paid for it, LOL.

I asked about metabolic disorders because I wonder why Paleo works for some people and not others. It works really really well to address PCOS, and people with PCOS get diarrhea when they use metformin....so somehow the body's processing of insulin and sugar is related to the function of the gut. Again, this is me making random connections based on nothing. Paleo isn't helping you and you aren't having less acne, so that leaves us with...nothing. I would walk away from Paleo and don't look back. Assuming you're solid Paleo you're already gluten free so that again is a path not worth taking again IMO. SCD is valuable because of the very high dose of beneficial bacteria (through the yogurt) and there are some carbs in there, which I think will make you a happier person overall.

Your acne is probably due to the pred but I don't know. You've gotten some great feedback here and I'm sure there is more to come.

Also, what dose of remicade are you on? Have you seen any relief of symptoms since you started it? I also didn't mention that I am on Prednisone too. Just tapered today to 30 mg.

Interesting I was diagnosed just after the birth of my second child and managed to stay pretty stable with meds until I hit menopause 5 years ago. Have been fighting major( and i mean major) flares ever since to the point that I am thinking of going back on the pill at 51 yrs old. My Doc thinks Im nuts. Doesnt think hormones has anything to do with it. Also I only flare in the fall. Allergies???
Wish I could help you. Good luck

I think it's a good idea to get your UC under control before getting pregnant. I was 27 with my first pregnancy and had my worst flare ever. Pregnant, swollen moon face from pred. not fun.

Then no flare with my second pregnancy at 32. I did develop gallstones when my second son was born and had to have my gallbladder removed.

hmmm.. wonder if first pregnancies have more risk of developing a flare. Either way, definitely worth the flare to have a child. MY sons are my greatest joy in life!!!

Wow I am already feeling so very very blessed with all your wonderful responses! Unfortunately I've been very busy at work this week but will try tomorrow to get back to each one of you personally. It's amazing how many of you females can agree how much hormones play a role in our disease. LaurieD - my theory with pregnancy is just what you said. My body clearly loved the birth control hormones, which to a small extent "mimic" pregnancy, so that is my hope is getting pregnant to relieve my symptoms.

As an update (it's been 3 days since I wrote), I have actually been improving the past couple days. Did not see any blood in stool today or yesterday. However, I am still having abdominal pain. My disease can be tricky so I don't want to get too excited! I have 3 days until next Remicade so looks like I am holding out after all! I forgot who asked if I have noticed improvement with Remicade and the answer is yes. However, I started the Pred at the same time so I don't know which it is. I am still doing the 10 mg of Pred.... acne is literally getting worse every day so I think it might just be that.

One last thing I have to share...my worst day this week of blood was day of ovulation, I swear all, these darn hormones! I know because I get very sore nipples at ovulation and then they continue to be sore until almost the start of my period. Well, I believe my period is around the corner and I am feeling better....crazy! I can't do another cycle :( I am getting BC tomorrow when I go for my annual with my GYN. Also plan on telling my GYN my sad saga and plans to try for a baby on all these crazy meds (once in remission). Crossing my fingers he is acceptive!!