A New Chapter--starting Humira today

Well, it's 3 months ago tomorrow that I jumped into that triple abx treatment that seems to have changed the course of my disease for the worse. 4 weeks ago I hadn't heard of a RVF...but here I am, still in shock and rather tearful at the emotional and physical changes this brings. IBD isn't a sexy disease to begin with and to add this....It's also a challenge to reconcile having moved from UC to CD. I've been over to the CD section and it's rather terrifying. Not a lot of hope there.....too much suffering.
...of course it doesn't help that in recent weeks 2 people I "know" have died of UC/CD complications.

Despite all the suffering I've had over the years (8 years ago this month I got Pyoderma), I was lucky to have a resident put me on IVIG back in 2010 after being palliative. It's been my life saver, my friend, my "go to" in times of crisis. I could always count on it when I was fearful. I'm so grateful to every single blood donor, lab worker, hospital and of course my amazing nurses who have kept me alive, dried my tears and celebrated my successes. Of course to the Gov of Canada for picking up the massive tab.

Since Monday's IVIG I feel like myself; pre triple abx. Bowel is good, save urgency, energy is excellent, I'm hungry and am tempted to start venturing out again. 3 months ago I went bowling and to lunch with a friend. I was very excited about the abx treatment....but alas....That was the last time I went out, saw a friend, ate a restaurant, felt joy, a hug....

But I'm faced with a new challenge, likely caused by abx....I now have an RVF. I know I'm not alone here (thank you to PB4 for your guidance) but it's certainly another cruel part of this disease to accept. I'm trying to accept. If I could go for a transvaginal repair I'd do so in a heart beat, but until I see a urogynecologsist I start Humira today.

I've read really good things about Humira. I kind of feel like I'm cheating a bit on IVIG as funny as that sounds. The plan is to do both and wean off IVIG. I'm anxious and nervous about this new chapter. I'm hoping that since the RVF is only 3 weeks old, Humira will be a stunning success and this will just be a blip. Moving to an immunosuppressant is also a bit scary. I'm not worried about cancer at all but with IVIG I haven't even had a cold in 3 years so I'm a bit worried about fatigue and generally feeling unwell. I'm sure this is normal. I'm also going by myself today and if I'm honest I wish I wasn't. I was in hospital 3 weeks ago and it was the first time in my life when I was on my own. I know I'm not the only one, but it was a reality check I didn't like.

I'm sure I'll be fine. Like Vercausalt said in another thread my name says so:) I guess when your disease progresses or takes a turn that you didn't even know existed and your already depleted from the summer of hell....well it's a lot to take in.

One of my biggest worries is that Humira will cause my PG to flare again....and now of course lets add a second that it won't work for the RVF. But I'm getting a head of myself. I must think positive and fight through the negative thoughts.

I took a mindfulness course over the winter and am trying meditation. It's hard as my mind is like a ping pong. I am catching myself when negative thoughts come through.

Anyway, not sure the point of this post. But I owe everyone here a huge thank you. I know at times a lot of you didn't know what to say or suggest. I know most of you felt my pain and heartache at this disease. I started symptoms at 16 and I'm now 43....It's a long time and frankly I'm overdue for a long remission. I have things to do and people to meet. So here's to Humira! May Sept 1st be the start of remission.

Good luck with humira, think positively as it could be your solution and gain you access to club remission with all of the benefits thereof. You're long overdue and deserve a long vacation from horrid uc symptoms

Best of luck with Humira, I hope it does the trick, I'm sure it will!!

That's great U B Tough!!!

You'll be happy to know that Humira can actually clear PG up!!

www.ncbi.nlm.nih.gov/pubmed/23205329

I had a few spots on one ankle (a couple of clusters of this awful red itchy and painful sores) that would go a bit deeper into the surface of my skin which I'm sure was a mild case of PG and within the first couple of weeks of being on Humira they all cleared up completely and nothing else would touch them...I had them for 11 yrs and tried everything under the sun with no success. I barely even have scars left from those spots but it was quite mild compared to many severe cases out there of PG. I was lucky it didn't get worse and thankful that Humira cleared them so quickly!

Side effects from Humira can vary for each, the only issue I got from it was horrible headaches (like migraine severity) that would last 3 days straight....Keith here at HW mentioned using an antihistamine and that did the trick, I only have to take the antihistamine the day I do my shot (I take the antihistamine before bed the day I use Humira) and that takes care of the horrible headaches. I'm on Humira weekly.

I do still get a bit tired more than usual for a day or 2 after my shot but that's improved since I first started Humira and nothing I can't handle especially compared to what CD and IBS has put me through lol.

Sending good vibes and thoughts your way that Humira will finally give you your health back!!