Feeling hopeless.. Fistulas

I had a terrible crohns flare in March of this year. Ended up in the hospital with a huge perianal abscess and fistulas. I had seton placement surgery along with antibiotics and steroids. A few weeks later they started me on remicade. Initially, even after the seton surgery, I had terrible pain at the abscess site with immense drainage. After the first and second doses of remicade the pain and drainage lessened. Since then though, it has been a rollarcoaster of manageable pain one day and horrific pain the next. I get regular checks with the CRS who says the fistulas are draining fine-everything just hurts because they keep refilling. For awhile I went on various antibiotics (including cipro, flagyl, Zithromax, doxycycline) that seemed to do nothing. I am also on the GAPS diet and am 100% strict. I have zero intestinal symptoms. The abscess pain and drainage will be manageable if I rest a ton. But the minute I try to be active like a normal person (running errands, etc.) I suffer terribly the next day. It is impossible to rest in bed all the time as I am young and I have a 1 year old and I need to live a somewhat normal life. I'm so tired of this pain. Today I saw the CRS and she suggested we talk to my gastro about adding something like Imuran to the remicade. I really don't want to increase my cancer risk and I'm just hoping eventually this diet kicks in and I don't even know if the remicade has worked past the second dose. I feel like I just need to mentally prepare for the bag. I feel so hopeless and tired of pain. Any suggestions?

I think you are jumping too far ahead in "preparing for the bag". There are lots of other TNF-a blocker to try if Remicade does not work.

I know it is so frustrating and is such a slow, agonizing process to get things under control. I'm going through similar issues since coming off the TNF-a blocker in March after being on them for 15 years. I might have to go back on it.

Antibiotics have NEVER worked for my fistulas. ever.

I too have a PA fistula but have been just able to control IT OVER THE LAST 25 years with all the various meds
I feel for you guys you make me feel lucky elizajp as I sit here getting my first entyvio infusion. Praying it saves me like remi did years ago.

Cipro Flagyl worked for many years back n the 90s. Then got neuropathy from the Flagyl had to stop and cipro alone didn't do the trick.
Was getting out of control and along came remicade, saved my butt for 10 years then it stopped working. Was med free for first time in 30 years. Now inflammation seen on scope with D.
Then Tried humira for 6 mos and back came a nasty fistula.
After suffering about 3 mos they did an EUA placed a seton and I feel so much better and no more abscesses or pain except soreness at the 2 extra b holes.
Eliza kudos to you for being 100% GAPS. surprised it's not helping more. Maybe try an elemental diet. I did the LTYG absorb plus before and after tha eua. Seemed to help gave enough energy and was satisfying and pretty healthy.
It may be that almost all foods can be a trigger for crohns.
Also remi may not work as well with active infection present. FOR ME THEY CLEARED THE INFECTION FIRST THEN THE REMI.
I would go for IV antibiotics to clear the infection before bagging it plus all the other options.
I wouldn't likely have any operations to remove anything again for crohns unless it was acutely life threatening.
It will likely come back.
Then next for me would probably be LDN if entyvio doesn't work
Also massive high quality probiotics like the natron trinity are essential.
Mish why did you come off?

Just finishing up the entyvio infusion live from UCLA SM. all seems fine no reaction to the drug so far.
Now we wait months and pray for good results and getting ones life back
Good luck to you both.
Never give up. Surviving this disease makes you that much stronger as a person.

I don't have any suggestions, but I sympothize with you and I know how terrible these things are and how hopeless they make you feel. Just hang tight and i hope things get better for you. I hope the doctors are able to figure out a solution to your pain. hugs.

Hello, since you mention many antibiotics i was wondering if probiotics were mentioned to help rebuild your beneficial gut flora? It has been said to be an important part of the immune system. Ask you Dr. if this is something you could try.
Also, abscess/fistulas can be very different from each experience. The location can make things vary as well. Pain can be extreme to mild. How are your follow ups going?
Are you able to soak in epsom salt and warm water in a sitz? It can be soothing and for some temporarily reduce a little pain and lessen irritation in the area. As always, ask your Dr. if suggestions would be OK for you to try.

Hope you feel way better soon.

Thank you all for your empathy and thoughts! Yes, I'm actually on heavy duty probiotics, BioKult (the GAPS ones.) I've tried tons of others including garden of life and natren. Hoping these do something. I also soak in Epsom salts pretty much every day. I know they are probably going to suggest adding Imuran to Remicade. The risks with the combo makes me so nervous. Is it crazy to think the bag is actually less of a risk and more likely to bring about healing? The pain is okay some days, but other days I can't walk or sit at all. I don't know if any of y'all do GAPS but I've only been on full GAPS- I haven't done the intro yet. Planing to do that in October. Maybe I need the intro? I don't know. Praying for a miracle!

If you are out of options, I can tell you what is working for myself. It might help or it might not, but either way you want to avoid the bag unless you have no other options.

I had one for a while due to fistulas. While it is a good option when you are in extreme pain, the bag presents several problems best avoided.

I hope you find something that helps.

Dan

Elizajp said:

Thank you all for your empathy and thoughts! Yes, I'm actually on heavy duty probiotics, BioKult (the GAPS ones.) I've tried tons of others including garden of life and natren. Hoping these do something. I also soak in Epsom salts pretty much every day. I know they are probably going to suggest adding Imuran to Remicade. The risks with the combo makes me so nervous. Is it crazy to think the bag is actually less of a risk and more likely to bring about healing? The pain is okay some days, but other days I can't walk or sit at all. I don't know if any of y'all do GAPS but I've only been on full GAPS- I haven't done the intro yet. Planing to do that in October. Maybe I need the intro? I don't know. Praying for a miracle!

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Hello Eliza

Firstly, I'm sorry you've been suffering so much, I can't imagine how you feel and want to let you know we are here for you.


I know you are nervous of the potential risks of combining imuran and remicade but they are only a potential. There are many cases where these medications have been combined successfully and safely and allowed the person a much improved quality of life. It's important to remember that there are risks with everything, undertreating crohns comes with more risks than the treatments. Talk to your doctor about your concerns. Make sure you ask them about everything that's concerning you and make sure they give you clear information. Remember that there are always going to be those stories of things going wrong because when people are sick and scared they turn to the Internet etc to share their experiences but when they are well they are often too busy enjoying their health to come places like this and share.

If you would like to consider surgery then again that's something you should discuss with your doctor. Surgery does of course have its own risks. If you would require removal of some of your intestine then that's irreversible, you'll never get that gut back, and that can have an impact down the line. Having said that, I had a resection last year because of scar tissue, and I don't regret it for a second. Just make sure you have all your facts. I would say that generally it is better to give the meds a bit of a chance first, as surgery is a massive step but obviously each individual case is different.

I think the best thing for you to do would be to have an honest and frank discussion with your GI. Make sure you tell them what you've told us about how difficult the symptoms are and have them outline your current options. If you want to consider surgery but they want you to try the medications first then you could always ask them to agree a sensible amount of time in which to expect some improvements before they review things.

Robrich said:

Mish why did you come off?

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I was on Remicade from 2000 to approx. 2009. I had to stop once for insurance reasons and the 2nd time for the 3rd trimester of pregnancy and breastfeeding. At that point the doctors figured I should try Humira since Remicade tends to build up antibodies. I then went on Humira but after many years it started causing depression.

Unfortunately my fistulas are going crazy and I had 2 break through. I'll be starting Cimzia within the month I believe.

Eliza, first, I hope things get better soon, I know how anal fistulas + an abscess feel...

When I was originally diagnosed it was because of an anal fistula and an abscess. It took 5 months until I had a diagnosis and another 3 months until they drained the fistula and another 3 months until things finally went somewhat to normal on the fistula/abscess front. Unfortunately these things take a decent amount of time to heal, for some people even much longer than the year it took for me. With a toddler to care for this must be extra hard, but I do not believe that lying in bed all day actually does really help with the healing much, at least according to my surgeon and Gi back in 1999.

I feel for you. Just had surgery on my anal fistula and abscess last week. It really freaking hurts and is totally disgusting and I'm actually confused about te entire thing. Plus I'm 26 weeks pregnant and was told while in the hospital this last time that I have to have a c-section so I don't blow my bum and lady parts out. Yay. And also found out this stupid crohns is causing my baby to have a very small abdomen so I get to worry and feel guilty about that. I can't walk much rigt now and I'm so tired of laying around and all this stuff that's coming out of my seton and surrounding areas is so gross. I hate it all. I was just diagnosed with severe crohns in July. I'M almost done with antibiotics but still infected so I can't start Cimzia yet. I know I'm no help to you, just want you to know you aren't alone. I'm miserable and scared and afraid eventually I'll be incontinent ad bagged. I hope you start feeling better asap. You're in my thoughts.

@LilB13- so sorry you're going through this too!! My first few weeks after surgery were absolute hell. So much pain and drainage. Couldn't move- it even hurt to turn to one side in bed. I will say that it gets better- and worse- and better. But I do think there is a light at the end. I ended up having two more setons placed last Thursday (so that's four in total...) and I'm still in lots of pain but the doctor said the fistulas ARE closing some and the overall inflammation is going down. She also said the original setons weren't really draining that affectively so everything just kept refilling and getting stopped up and hurting so bad until it drained. Anyway, still lots of pain but I do think there is a road to recovery. It's just a long one. From my understanding, the setons really shouldn't be anything more than mildly and occasionally uncomfortable. This business of not being able to walk at all- totally not okay. I put up with that for way too long. So if yours doesn't get better in a few weeks or at least when you get to start Cimzia- demand something else. The pain is exhausting. I have been dealing with it on and off since April and I'm so close to asking for a temporary ileostomy and would if not for the bit of hope the recent surgery gave me.

So, keep up your hope and don't settle for too much pain! These things do seem to heal eventually. If you can try to do an SCD type diet as it will probably increase your changes of healing. And just a little word of encouragement- they told me my baby's abdomen was measuring small but he turned out just fine and is a perfect weight and never sick. So sorry you're dealing with this while pregnant. You're in my thoughts too!

@elizajp thank you so much for sharing your experience and hope with me, especially about your child. I think that's what I'm worried about most. As for the fistula, I'm worried it will keep filling with fluid too like yours but I do at least have some ok days. It's only been a week but Im still calling the doc Monday. She says I don't call enough since my case is so severe. Haha. I just wonder how the infection will cease if antibiotics aren't working. They said I can't start Cimzia wirh an infection. This disease is awful. I'm sorry for all of us that have to live with it. I truly hope this is the start of recovery for you. I can't imagine your pain and frustration but then I wonder if the same thing will happen to me. Time will tell. Hugs

Hang in there kiddo.I'm on my 4th tnf blocker(Cimzia),remicade worked the best for me.even went into remission for awhile,but it stopped working.it is a constant struggle to manage them.good luck,stay strong

Thanks Chris I just had my second dose of Cimzia yesterday. That gel stuff is NOT comfortable going in. But if it works, that's all that matters. IF. We will see. I hope it works bc I feel like the crohns isn't getting better. Thankfully my drainage area is healing. But still hurts like hell. Just so uncomfortable. But has to be in at least till baby is born. And with that, I'm concerned about infection with my c-section but jeez, I guess I'll worry about that later. Good luck with your Cimzia.

LilB13 said:

Thanks Chris I just had my second dose of Cimzia yesterday. That gel stuff is NOT comfortable going in. But if it works, that's all that matters. IF. We will see. I hope it works bc I feel like the crohns isn't getting better. Thankfully my drainage area is healing. But still hurts like hell. Just so uncomfortable. But has to be in at least till baby is born. And with that, I'm concerned about infection with my c-section but jeez, I guess I'll worry about that later. Good luck with your Cimzia.

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Yeah they sure do,I'm heavily tattooed.i have a high tolerance to pain....yet that gell is thick and burns from start to finish.well worth it though.im glad you sound in better spirits.

Also,my sister in law had a baby while going through a rough patcj...she had thr same concerns you do.she healed well with no complications.hope that eases yor mind a lil.
You've already made the first step,speaking your mind about a sensitive:cool2: and awkward topics.it took me 10 years of symptoms to finally tell my wife someghing serious was wrong with my health...only then can you get help. the symptoms are embarrassing especially for women, keep up the good work and I hope for your recovery:cool2: