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Crohn's Disease
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Posted 2/17/2017 5:59 PM (GMT -5)
Downgraded from UC to CD in Aug when I presented with 3 fistulas including recto-vag.
Immediately started humira (up'ed to 80mg weekly mid Dec) and started imuran end of Dec.

I presented my GI with a study about healing fisutlas with hyperbaric oxygen. All 9 participants healed fistulas between 21- 40 dives (sessions). I started HB also mid Dec. and have had 33 dives as of today.

Jan 5th MRI showed the rect-vag fistula had granulation. The other 2 fistulas had shrunk "moderately" and "significantly" respectively. Even though I was continuing to abscess (chronically and grossly since Oct) I felt things were improving. Well, there was evidence things were improving!

It's very hard to do daily HB when I'm so ill. Sometimes I have to hang on to hospital walls to get there...

Anyway....was supposed to have seton put in on Jan 30th. The surgeon could not find any connections/holes in rectum or vagina. We thought I was healing. However, I immediately started abscessing again. Which is where I am now.....for the last week pressure butt pain. I take percocets to get to HB. I don't know which is worse, the pressure pain or the drainage which lasts from 4- 28 days of pad/diaper changes every 2 hours. So I'm waiting for this to burst....again. I think it's pressing into my vaginal wall.

My bowel is good with the exception of urgency but that's improved a bit with HB. Generally 2-4 times in the morning all 100% formed and normal. My fecal cal is 1066 though.

Yesterday I swore I had air bubbles in vag and just now passed gas there. I immediately had a physical reaction....instant sweats and nauseas. Passing gas there is the most distressing thing. Why is this happening again when I was doing so well? What if I'm that 1 patient that doesn't respond to the HB? I'm so upset and freaking out!! I'm feel like I'm literally going to be sick. I'm so sad that this is happening to me.

My HB has been extended to 60 dives so there could be hope.

I've already suffered through pyoderma (to the point of almost loosing my life and legs) and I'm having a hard time with the incessant suffering. When will I get better? I know it's a dumb question but I really just want my life back. Fistulas are a whole other ball game and the recto-vag scares me.
Posted 2/17/2017 6:39 PM (GMT -5)
Until you came here and told us, most of us had never heard about treating fistulas with Hyperbaric.
I'd like to look at this study. 9 people healed isn't that much, but we are all looking for a miracle cure.
Perhaps the reason why it's not so effective with you is because the people in the study didn't have Crohns and you do. I don't know. I haven't read the 'study'.
This Hyperbaric stuff is both good and bad. It gives you hope, which isn't a bad thing, so it is helping, but not enough. You're relying on it to heal you and you think it is helping close your fistulas. Maybe, maybe not.
But the fact that you're abscessing and you have a high f.cal are HUGE warning signs that your disease is running rampant in your body and that you are not getting better.
If you weren't abscessing like this, then yes, I would believe in Hyperbaric therapy, but you are.
I've only abscessed to the point of rupture once and I never want to go through that again. I would do everything that I could to avoid that from happening again. The fact that you have abscessed repeatedly means that your treatment and meds are not effective. I don't know what advice to give you, other than to tell you that you are very sick and that you should go get a fistulagram of the one fistula that is clearly open and see where it goes from there.
Posted 2/17/2017 6:50 PM (GMT -5)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137971/

This is the study...small but hopeful. I tested positive for MAP. My bowel has greatly improved from where I was pre-humira and all 3 fistulas showed healing...one of 80% reduction so that is good.

Just don't know why the abscess won't die.....I'm so tired of this.

I did read another study with patients who were healed around 60 dives.

I firmly believe it has helped, perhaps in combo with everything else. I can say that the urgency got better with HB.

I've never heard of a fistulagram. I'll look it up.
Posted 2/17/2017 7:50 PM (GMT -5)
Have you had blood tests to check your levels of adalimumab to make sure you're getting enough?

Sorry you're having such a tough time. Perianal fistulae must be brutal to endure. A former coworker with Crohn's had them.
Posted 2/17/2017 8:05 PM (GMT -5)
Have you taken any antibiotics for the abscess ? Something like Flagyl ? The Humaria in not letting your immune system fight infection . You need antibiotics .
Posted 2/17/2017 9:08 PM (GMT -5)
I'm afraid to say it, but it does seem like the HB isn't helping all that much - I wish it was.

Getting a fistulagram sounds like a good idea. The more you know, the better you and your doctor can plan future treatments. Best of luck to you.
Posted 2/17/2017 9:18 PM (GMT -5)
I'm trying to recall you're previous post and unsure if I asked you about Remicade?

Remicade is still the state of the art anti-TNF we have for Crohn's. It also has the best track record for healing fistulas. I agree wit the previous post regarding your abscesses. I would also recommend Flagyl. Have you ever had the abscesses drained? Certainly another posibiltiy. Abscesses are difficult to heal without a drain, as the antibiotic can't penetrate the tough exterior.

Hope you're feeling better soon. Time to push your GI harder to get some appropriate treatment for what your going through. You can persist with the HB, but as NCOT suggested, it might not being working for you.
Posted 2/17/2017 11:06 PM (GMT -5)
thanks all.
What accounts for the shrinkage and granulation if it's not HB? Or combo with Humira? The surgeon couldn't find any openings as of Jan 30th.

I have no choice but to keep going with it. No other options. It's exhausting fighting this infection. The minimum is 40 dives anyway. I may reduce to 4 days a week instead of 5 though for a break. My GI was supportive because fistulas are hard to treat and aggressive treatment is necessary. I think if I stopped, I'd be wondering what if...should things worsen.

As far as abx....I'm on clarithromycin as per study. I've used flagyl and cipro as well in the past ( with horrid reactions....hence unable to enter a formal MAP study). But little is absorbed into the rectum anyway.

I've had 2 drained, the rest spontaneously burst. Sometimes I feel it and others I don't. Admittedly, this is the longest period of non-drainage since November (7 days now). Geez...this drainage will be fun.....

I have a GI appointment on the 28th----I need better....just don't know what else is left. My guess is he'll want me to see HB through then do another MRI or CT....

I was on Remi many years ago with only 11 weeks of remission. Then they thought it caused my PG (it didn't). I've read Humira can take 6 months to work so I'm still just shy of that; although bowel is good.

No blood work to measure specific levels. Will ask. But I'm on 80mg a week which is considered very high. Increasing imuran to 150mg next week. That drug takes at least 3 months to kick in and it's only been 6 weeks for me. Perhaps, after writing this there is hope.

I just don't understand what kills the abscess. It's not the seton. I need to figure out what specific bacteria is in the abscess and go from there. I may need to get back on IVIG and or find another abx that targets that bacteria.

I don't see the surgeon until Mar 10th, which is unfortunate.

Thank you...guess all I can do is accept as best as I can. I know I couldn't have done such great things if my case wasn't so complex.
Posted 2/18/2017 9:37 AM (GMT -5)
UB - I didn't mean to imply you should stop HB. To the contrary, I think you should keep on going until the end. To be honest I'm out of my depth with fistulas and abscesses. I know they can be hell on earth to treat, that's about it. I would try every treatment option available to me and hope for the best as well.
Posted 2/19/2017 10:23 AM (GMT -5)
NCOT- you are kind to clarify. My post wasn't about the efficacy of HB--just more of a sharing of my sadness and continued suffering. But perhaps that is my fault for not clarifying.

I do believe this is like chemo. No option but to continue even though it may kill me in the process.

Yesterday was horrible. I deperately wanted to ask someone to help my in the grocery store....I could be heard huffing and puffing. Today I look back and don't know how I managed.

my bowel was terrific ---only went once. Don't understand why fec-cal is so high with formed, normal bm's. I guess it's the fistulas and abscessing. Sigh... There is a large part of me that can't believe this is my life. I worry about how I will cope without my mom....she is 80. After my surgery she said her only wish was that I get better as she doesn't know who will care for me....and there's nothing like a mother's TLC.

How is your garden club? How do you manage with the number of bm's you are having.
Posted 2/19/2017 10:20 PM (GMT -5)
U B,

Hang in there. Fistulizing Crohns is painful and challenging. I have never heard of HB for fistulas. I have taken Remicade for the last year and 8 months. One of my fistulas, rectovagina, has not responded and has in fact gotten larger. We are evaluating the success of future surgery.

Hug your Mom often and tell her how very much you appreciate her. I lost my Mom 5 years ago and I miss her so. If you can try to build up a support team...and make sure you have someone you can just talk to or hug.

Sending lots of ((hugs)) your way.

Clo
Posted 2/20/2017 12:07 AM (GMT -5)
My heart goes out to you UB. I have been hoping hard that the HB would help you. I had badly wanted to try it when i had my fistulas several years ago. I know it has great success with non-crohnies but there wasn't enough data on crohn's patients. Keep fighting the good fight with it.
I can relate to what you and your mom must be going through. My mom has said similar things. I nearly lost her last hear and it has been tough on both of us to see each other suffer and think about what life would be like with out each other and how either of us would survive. As Clo said, hug her tight and let her know how much she means to you! Do you have any close friends or other family near you?
Posted 2/20/2017 6:57 PM (GMT -5)
Thank you. My lady bits are in bits. I'm so uncomfortable. I don't understand why it opened up....

Unfortunately, I'm pretty much on my own. No real "friends". Too many years of illness. Not working either. I do have aquaintences and neighbours who can help but I can't tell them what's exactly going on. I just say I have crohns.

Do you guys think the Mayo would offer me something? I'd have sell whats left and crowd fund.

I did some research...there's an Italian CRS using cryotherapy to kill fistulas. There are others who insert a biologic directily into the fisutla tract as well.
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