For those flaring for years.....

How do you guys cope? I'm entering year 3...symptoms went from severe to mild until June when I tried a triple abx for MAP.

Now it's one thing after another.....worsening flare, peri anal abscess, yeast infection and I'm starting to experience symptoms I've haven't had in years....cramps, joint pain in hands.

I have 4 viable treatment options available but I feel really hopeless. Very tearful.

Doc prescribed an anti-depressant but I'm terrified to take it as it MAY cause more D. Which I cannot handle at this point. Will talk to her about switching.

I also don't work and have insane financial issues....
The down turn is from taking 5 abx since June 1st! Otherwise was doing pretty good with mild UC.

Was hoping I'd be farther aling in getting back to pre abx state but different things keep happening to prevent this.

Just really overwhelmed and have experienced significant medical trauma over the years, including 2 weeks ago with the drainage torture.

Thanks

Post Edited (U B Tough) : 7/24/2016 7:58:06 AM (GMT-6)

I feel like every time i flared, it lasted a long time. I would be struggling for an entire year to try to get into remission. Then often the remission wouldn't even last as long as I fought to get there... My most recent flare up, that led to surgery, was pushing strong after 18 months. I don't think I would have ever gotten it under control. I know surgery isn't an option you're willing to explore, and for good reason, how about trying some other alternatives, like LDN? or FT? I know you posted that trial the other day and that was an enema, maybe you can find one that is done with a scope? At a certain point, you have to accept that your life is going to be 100% focused on being near a toilet 24/7, or you have to find a way out of it. If an ostomy would give me freedom to live, I would rather have that than live chained to the toilet. That was a decision I had to live with the day I had surgery. I was lucky and I was able to get reversed, but there aren't really any guarantees and it is a huge leap of faith. I couldn't live how I Had for the past 18 months, that was all I knew for sure. After the drugs led to sepsis, it was a push, I realized it had hit a point where I was going to give up my life to save my colon - looking back, it would have been pointless. I am so much better off without.

My first 10 years of UC was a continual flare situation, I took RX meds faithfully but nothing improved, I switched doctors, tried different RX, tried SCD diet modification, tried acupuncture, tried hypnosis. Little to no improvement.

Because diet modification gave small improvements and RX oral meds gave zero improvements I headed into the diet mod. direction. It was very challenging removing the majority of the food I ate and testing each one to see if it was a problem. Probiotic VSL#3 was a big help helping my gut get better even though pre-diet mod. it was not a significant player.

95% turmeric/curcumin is also a big factor in my remission along with beneficial oils (olive, coconut). There are also some non-traditional things that are beneficial (out of the 200 I tried): clay water, other probiotics (Cardioviva), chicken broth and spinach are wonderful for my gut along with potato starch.

Mesalamine enemas (not suppositories) were also an important part of healing. Removing food that aggravated my gut allowed the enemas to heal that area.

Will diet mod. work for you? No one but you can answer that. It's not easy or fast or supported by GI's or even most other UC'ers. And even people that diet helps have different food lists, so no agreement even there.

I think FMT holds a lot of promise as well as medical maijuana and is a shame they are not being used/studied more. Doctors are afraid to do anything that does not have Big Pharma's legal protections, leaving people to muck about on their own.

I wish you well and that you find some improvement to head towards.

Thank you all.

Zen- u nailed it. It's not about my treatment options as I have many, it's about my mindset. I'm just really run down. You know you're in trouble when you can't dry your eyes long enough to take the dog out! The goal with my GI was to take the rest of the summer to regroup, let IVIG do it's thing and we'll set a plan for Sept. Well given the abscess and yeast infection I can't regroup. I'm so afraid the abscess is coming back, which will involve another hospital day/drainage/weeks recovery. Not to mention the state of my lady bits:) Sadly, I also suffer from a case of "healthy, normal people envy" which does not help. I will call my doc tomorrow and have her switch me from lexapro to wellbutrin as suggested by good people here. I know I need to do something about this depression. I really do.

Marauder- ok u get it too.

Which triple abx? Borody's? RHB-140?

Mine was an epic failure which landed me in this mess. The hope was of course I'd go from mild UC to remission.....NOPE! I tried rifaximin, gentimicin, and flagyl. It got ugly within 2 days and I haven't been the same, hence wishing to go back in time.

I did get my test results back from John Aitken last week. I tested "strongly positive" for Mycobacteria. 15% of my immune cells are contaminated suggestive of an active infection. At this point I'm not willing to try another abx protocol......I'm going to email Borody and see what he thinks. Canada Mark told me that Remi and Imuran have anti-map effects but I've failed both years ago. Wondering about Stelara, FMT's, tacrolimus?

My situation is complicated with the IVIG as I don't know if that's what made Entyvio ineffective and what impact it would have if I tried Stelara.

Bottom line is that I think I just have to get through this day and see where the abscess/yeast is tomorrow and go from there.

IM- 10 years....such a long time. How did you do it? I feel so hopeless. How do you keep the faith? Been GF for years, tried eliminating etc etc....now no dairy expect for occasional slice of cheese. Tried cows milk kefir lately as that's all I could find and it made me worse. VSL is unaffordable...tried a few others but it hasn't made a difference so I really don't bother with probiotics anymore.

@maurader

Just going to answer for UB here to a degree. UB's triple abx were very different than what I think you may be trying. In this case it was:

3X Daily:
80 mg Gentamicin
550 mg Rifaximin
250 mg flagyl

It was based on treatment for a different condition called PG (Pyoderma gangrenous) where there were some patients with both Crohn's Disease and PG and a few found resolution of both conditions where the premiss was that mycobacteria in general may be involved with the PG aspect but they were not sure. Gentamicin and Rifaximin being extra rough on gut bacteria and the gut itself so it seems in general.


Are you taking Rifabutin, Clarithromycin & Clofazimine? Or there is a UC triple abx at one point that showed some promise but I forget which they are now...

UB's response sadly was an epic failure as she has mentioned. Maybe tread carefully with your's as well. It seems we all respond differently to various abx. It's very frustrating.

Post Edited (Canada Mark) : 7/24/2016 1:59:50 PM (GMT-6)

U B Tough said...

Marauder- ok u get it too.

Which triple abx? Borody's? RHB-140?

Mine was an epic failure which landed me in this mess. The hope was of course I'd go from mild UC to remission.....NOPE! I tried rifaximin, gentimicin, and flagyl. It got ugly within 2 days and I haven't been the same, hence wishing to go back in time.

I did get my test results back from John Aitken last week. I tested "strongly positive" for Mycobacteria. 15% of my immune cells are contaminated suggestive of an active infection. At this point I'm not willing to try another abx protocol......I'm going to email Borody and see what he thinks. Canada Mark told me that Remi and Imuran have anti-map effects but I've failed both years ago. Wondering about Stelara, FMT's, tacrolimus?

It will be the RHB-140 drug trial. Were rifaximin, gentimicin, and flagyl the ones you tried? And who is John Aitken?

I believe that the 5ASAs also have bacteriostatic effects on MAP?

Canada Mark said...
Which doc got you in on that? The RHB-104 That is the trial and drug I desperately want to try but my current GI at McMaster is dead set against anything to do with MAP... though he has not seen the results form John's test on me yet, and I had a second lab culture the bacteria from a separate blood sample before that as well.

And John Aitken works with Borody as part of their group. Borody as you know is the one that developed RHB-104 and sold it to RedHill BioPharma. John has a lab in New Zealand that does some of the initial testing to determine if a person in positive for mycobacteria so they (or any doctor) can monitor the progress of the RHB-104. So you send in a blood sample, and he will not only culture mycobacteria from your blood (if you are positive), but he will also stain and image the bacteria within your blood sample and count them (measure as a percentage of total macrophages infected). You can repeat the test after being on the antibiotics and see how the percentage changes over time, monitor the performance and look for bacterial resistance.

Here is a link to a poster series he and broody did recently:
thecrohnsinfection.org/john-aitkens-map-research-acg/

If you are curious to what one of his test reports look like, I can email you mine.

EDIT: At the end of the poster series you will see it says "antibiotics profoundly suppressed the growth of L forms, but did not eradicate them"... I believe this is the old treatment of the three abx separately in higher doses, and not the RHB-104 but I will ask tonight.

Good luck!! and all the best... there's so many people that need to catch a break here. Lots of us will be rooting for you!

I got it through Dr. Steinhart at Mt Sinai. Theyve been recruiting for the last 18 months and are still looking for more people. Id be more than happy to ask about getting you in if you are interested. Which doc are you seeing at Mac again?

What was the second lab you sent a sample to? Im really considering getting my blood checked (though it would partially de-blind me from the study) but I wasnt sure if it was worth the $250 + shipping. What are your thoughts on that? Also, do you know if John's lab is the one doing the lab work for the trial?

Thanks for the info btw, Ill have to comb through that site tomorrow!

Hi UB, you've had such a tough time. I'm so sorry.
You're in good company here. I can totally relate. I'm going on 20 yrs of having UC. Many long flares (which have worsened over the years) that each took over a year to get symptoms to subside as well as trying many medications that led to dead ends or caused more problems that I had to recover from. Those times were truly discouraging and at even disabling. I spent way too much time trying to get help from doctors who seemed less informed than I had hoped. Ultimately i decided I know my body best and it's on me to chart a course forward.
Been times of deep despair and more stress, which I'm sure made my UC symptoms worse along with wearing down my resilience. How I got through was what some others said here- my mindset that it's an endurance test and I have to go a day at a time. Sometimes a segment of a day at a time. I read a lot, either here in the forum drawing strength from knowing I'm not alone and specific ideas about what else I might try, or reading in medical journals.
I also had to get over being mad at my body for not functioning properly, as there have been times of being housebound or of necessity obsessed with what to eat or not (which doesn't make it easy to socialize or go to work). I did try anti depressants as well as sleep aids when on prednisone. Basically it became all consuming at times. And frustrating to deal with insurance and medication reimbursement. Very time consuming especially when I didn't feel well. I tended to isolate.
I'm searching for some good things to suggest that have helped me - identify things you're grateful for every day, try to be helpful to other people or pets, be gentle with yourself and compassionate toward your body, and know that there are ups & downs to this disease (some people find it helpful to keep a journal as a reminder that there are tough times and easier times in between). I know that most people are struggling with something and this is just the hand I'm dealt. So I just forge ahead. And it helps to know that's what we are each doing, drawing support from other forum members.
Sorry I don't have any profound points. But that's the bottom line for me. Just powering forward because I won't give up, hoping researchers will come up with better drugs, and drawing support from folks here who understand our misery and celebrate our relief when we have such times when it all seems more manageable.
Hang in there and keep posting....

Hi Everyone,

Thank you for all the lengthy responses and wishes. I don't know why but i thought I was the only one in a really bad way here. Seems silly.

PB4- thanks for popping by. Haven't seen you around in a while. My first bowel troubles started at 16; just celebrated my 43rd. So yes, it's been a long haul for me too. I feel sad about how much life has been robbed of me. I feel sad that I don't remember what it's like to wake up and just feel good or normal. What makes it worse is the 2 years I spent in hospital at 34 with PG...lost my biz, connections, friends, etc not to mention almost my life and legs. I kinda figure I've suffered enough. Sorry. It's a pity party day. I did take a Mindfulness course earlier this year but I didn't keep it up. I found on Jini Patel's website a blog and a guided visualization about healing the bowel. I listened last night but my mind was like a ping pong ball, back and forth with other contaminating thoughts. It will take time.

Content- thank you. Good things to remember, it's just harder to smell the roses when one only smells sh#t:) I shall go on because that's what we do. I truly believe IBDer's are the toughest people on the planet. Regarding being compassionate with myself: well that's where I'm struggling. I'm mad at myself for not stopping the abx as soon as I began reacting, or within a week; not after 22 days of hell. Frankly, I mad at myself for even starting when my symptoms were fairly mild and stable; but I guess the thrill of remission took over.....I need to let this go. It's over, all I can do is try and move forward.

Poppie--- I should be asking you! As soon as I woke I was in a panic state....tons of pain, gas, yucky bowels. As far as FT's, I believe that's the only way really to get my gut biome stable again. But I don't have a donor and if I register with the study, it will likely be at least 10 weeks before an actually transplant. I'm very tempted to call my GI and tell him to start the paper work for Stelara...but fear of a reaction with IVIG has taken over and once again I feel paralyzed.

I've never felt worse after IVIG (had one friday). In fact it's usually hope for me but this time is different. I think my body is overrun with yeast and my gut has been wiped out. I actually took 5 abx in 7 weeks!! So it will be hard for IVIG to work it's magic under the circumstances. I did some research into bentonite clay....may try that. I'm pretty weak, not eating at all. Really just can't be bothered to even make an egg. You know?

I left a message for my family doc asking her to prescribe Wellbutin. Hopefully, she calls back.

Marauder---good luck. Will look forward to seeing how you progress. I'll send my GI the link to the study and your docs name....although as you can imagine I don't think I'm ready for another abx until I'm a little more stable. From what I've read most ppl tolerate these abx well. Very different from my protocol. BTW, I literally took me 10 years to write my thesis due to this disease. Totally get how hard it is even to sit and study.

That's my update---I truly appreciate you guys. I know I'm not alone.

Poppie--- how are you? So wishing your hubby would make poop housecalls to us all!

"How do you guys cope?" We do what's necessary to get by, we're true animals of adaptation keenly alert of our limitations and work within them. Flares can last years and you've got to live, work, and do things you enjoy. It can be a true struggle. It took me two years to reach remission after my uc diagnosis. During which, I worked daily and still got outdoors to do things I love. Urgency, frequent bms, and accidents became an unfortunate way of life that you just accept and adapt to. You're prepared with emergency change supplies, leave the house when it's safest to do so (no early am jaunts), use the restroom as a precaution whenever given that opportunity, and if you sometimes need an emergency stop by the side of the road to poop in the woods then so be it. While it's near traumatic to have your first accident or close call, I can assure you that after many you are barely affected. Sure, you still get a little pissed off/annoyed but accept it's out of your control, you're a happless victim of randomness and do what's necessary to cleanup and get by (generally remain cool, calm, collective and effecient). I've spoken to operating room nurses, emts, and combat veterans and it's generally the same sorta thing. Your emotions harden, and traumatic things don't get through your thick skin/emotional armor and that's essential when dealing with extreme situations. And thoughts of remission or improvement are met with a smirk or laughter (not me, that bus left years ago, I'd be better looking for leprechauns, etc.). Uncontrolled long term uc can spawn deep depression, anger, resent, etc. It can put the absolute sanest and strongest soul into a deep unrelenting melancholy. You need a way out, a glimmer of hope and that it's necessary to dramatically shake up your treatment plan to find a way out. If it becomes necessary, just accept surgery as inevitable and undergo it. For me, remicade was my out, remission just found me one day. It happened so slowly I didn't realize remission had occurred. Perhaps, you have to giveup and stop caring about remission to find it, or something. I could try to tie it to a higher meaning or somethin' but, nah, it's no fairytale nor some greater calling. The reality is that it's just raw, unadulterated, and pointless suffering due to uc with time lost; nothing pretty or worthy of grandeur. 💩.

Just sent the info to Canada Mark. I contacted Sinai.
Dr Silverberg prescribed Ivig for me a while back; wondering if I can stay on it....

Canada Mark has a heart of gold....he helped me connect with John Aitken & let me use his fed ex account. It was $100 from Toronto.

Post Edited (U B Tough) : 7/25/2016 12:35:37 PM (GMT-6)

ks1905 said...
UBT,

Have you ever tried Cyclosporine? It is the most effective out of all the UC treatments. I always had that as my backup plan but I ultimately chose surgery after using Cyclosporine twice previously.

One of the issues is that Cyclosporine usually precludes you from being in trials for other medications for 6-12 months. And you sometimes have to go into the hospital for it.

I have yet to find a single GI in Canada who will prescribe cyclo. Ive begged 4 docs (3 of whom are amoungst the best in Canada) for over a year now and they have all refused. Even considering Ive been in a 7 year severe pancolitic flare with backwash ileitis and the only options I have left are trials.

@UBT - That is awesome news! If you want the trial nurses info, shoot me an email as well!

They offered it to me but they said it would require a hospital stay. I decided not to bother because there were no medications left for me to use for maintenance. It didn't seem like it would provide very much benefit to get into remission and then have no plan for when the UC flared again - and it always did very quickly, usually before I was even 100% stable.