My experience with Humira and update

Well, it's been 5.5 months of humira and it's failed to close my 3 fistulas or really stabilize me. I continue to pass gas vaginally and it burns. At times pooping also makes me burn. I'm also in this cycle of always having a peri anal abscess. More on that later.

I really miss IVIG as I know it's instant to work and my bowel was more stable. For example, I would poop 4-6 times a day, all 100% normal but would know I had 1.5-2 hrs in between so I could go out without in between and not wear diapers. 1 immodium and I could go out for lunch (with 5 hrs to purge) and I never went after 5 pm. But of course I still had urgency.

Humira is very different. At times I have sudden d with floating stools. It comes out of nowhere and can last for 24 hrs or 7 days. I never have formed stools and at times there's m. I'm currently going from 1 - 5 times (1 is usually the day after my weekly injection) but the urgency is so severely severe that I have no choice but to wear depends. Today I've gone 4 times (2 days post injection) and had 2 accidents in the house. In addition to being expensive diapers irritate my vag issues. I hate how unpredictable Humira is and I'm so sad that my fistulas haven't healed, especially after reading how it can do so within 2 days My 1 GI says I'll be on it forever as it's the only thing that heals fistulas (I tried Remi 9 years ago)

Regarding abscess: This will be my 3rd since my October hospitalization. I'm extremely upset. Last week it burst from the fistula to the side of my anus. It's the most disgusting 4 days of pus drainage. The 1st day I'm in the bathroom every hour changing my pads. I don't go anywhere because feeling wet isn't comfy. So I stopped draining on Monday and now since yesterday I feel it coming up again. Except this time it's worse...its from deep inside where the pressure pain on both butt cheeks is building. Unless there's some miracle that means I'll be in increasing pain to the point where I have to crawl for the next 5-7 days or it will burst and drain within that time frame. So here's the thing....either way I'm on track to miss the holidays. I've lost most my friends and don't work. So I have invites for the 23 and 24th. That's it. When I get asked out there is hope. There becomes colour to the darkness of my life. It's a chance to forget or pretend or see and smell things that I don't get exposed to anymore. (admittedly sometimes I cry after with envy of healthy, working peopel). So if I don't go when asked out I literally don't know when it is again.....as I said I'm on track to miss both. I don't know how to miss this, this time. I feel very sad and I still can't believe this is my life.

I'm supposed to be having seton (s) put in but there's no surgery dates available. Frankly, I've been fighting it tooth and nail. Nothing could make me feel more abnormal than what I already am than to add a bright blue elastic band coming outta my butt. Diaper, meet elastic. Oh yes. I'm sexy and I know it.

I just feel so sad and yucky and gross. Worse is that I'm not showering.

I've started hyperbaric oxygen but don't think it gets rid of the abscess. (I'll write a separate post on HBOT as it's been interesting thus far-- 4 sessions)

Thank you Deb. You're always so helpful. My GI put me on Humira because it was "tried and true" versus Stelara which is showing promise for CD but there was no data on healing fistulas.

I'm committed to seeing Humira through until I'm finished my HBOT. My GI wants to add Imuran now but I'm reluctant. After HBOT I'll see how I'm doing, but if need be I'll petition Can. Blood Services to get me the correct dose of IVIG (which can also heal fistulas) I will.

100% of my day is spent managing, thinking or talking about my disease. It's exhausting and has destroyed my relationships. I don't think it should be like this after 5.5 months of Humira---or I'm just impatient.

I'm also having evening/nightly gas that is very painful to pass. I have to hold my front to reduce pressure to my vag. Sometimes the pressure is so bad that I pass whatever stool is in my rectum. Perhaps it's best if I stay home and decline the invites now that I think about it.

I'm wondering if the fistula heals that means I'll be in remission? Will that mean no urgency or diapers? Or does it simply mean tunnels are closed?

Incidentlally, I had my first shower in about 6 weeks last week. Still no soap or shampoo but it was glorious. I tried again a few days later and I was in such agony that it wasn't worth it. I think my goal for now is 1 shower a week and sponge the other days.

See what I mean? My bowel rules everything.

Hi Poppie,

There are days where I feel ok with it given that I have to accept what is, but most days I'm terrified. I can't imagine have a foreign thing coming out of my butt hole. Not to mention the pain, constant drainage, hygiene etc. But I may have to bit the bullet sooner than later.

I've been waiting for a date for over a month and am just told it will be in January. I did call again and ask for something before the holidays but there was nothing. I'll know within the next few days if this how bad this abscess is. I may need to go to emerg & have surgery. The pressure is definitely constant today.

My surgeon is also a problem. He's extremely negative. Some don't mind as long as he's a good surgeon but a kind word is equally important to me. I did get a second opinion with a kinder surgeon but he can't book me until February.

It didn't get done sooner because of the lady bit issue. That became my soul focus because of the pain and not knowing what was going on. Had anyone of the 5 gyne's my family doc referred my to seen me in Aug/Sept I would have been much better off.

It's been a big mess and such a fall out. I can't stand the thought now of being hospitalized and yet again missing out on socializing this xmas. But it's heading that way. I have 2 lumps on either side of my anus now which are the fistulas are trying to break through. My fear now is having 2 setons coming out of my butt. I don't know how to handle that but I guess I have no choice but to suck it up. I've emailed my GI but theres really nothing he can do.

I'm very glad to have experienced past love and passion because this will kill any future potential for romance. The surgeon said these would be in forever. Hopefully that won't be the case with Hyperbaric oxygen.