New here and am desperate for advice. (Chrones and abscess)

I'm new here and wanted to post something because I am in need of any advice! First off I'm 30 year old male and have both chrones and celiac and have really been struggling with it the last year (I've had it 8 years overall). Almost everyday I've been sick or something. I've lost 50 lbs or so the last year (Was down to 132 lbs from 185 last year, currently weight 140 and I'm 5'11. So anyways. I also got an abscess which was caused by chrones. It was in my abdomen and it took 2 months and 4 ER visits to finally figure out what it was. Only symptoms I had for a while (almost 2 months) was my leg felt horrible, the abscess was draining straight to my leg and I got to the point where I couldn't walk and felt like my leg was going to fall off.

Finally after a CT scan since they thought I had a hernia they discovered I had an abscess and 2 fistulas. So they admitted me and I was in the hospital for 23 days. They basically put a pig tail tube thing in my gut and drained it out, also had one draining my kidney which was infected. Finally after 3 weeks after being on a million antibiotics and attempting to drain with just the pigtail, they decided to go with minor surgery to get to a pocket of abscess and suck it out and placed a j-ball tube to drain it. That worked great so I was finally seeming to get better and this under control. Another couple days went by and I was finally released from the hospital after almost a month. This all started about 5 months ago and I was released from the hospital almost 2 months ago.

Well since then I've been to the hospital and admitted 3 times. Just seems like I would get better then worse. So I was put on some strong antibiotics called Meropenum which seemed to do the trick. After a CT scan the docs basically said my fistulas have healed but I still have an abscess. This has been horrible for me and I don't really know what to do anymore. I still drain some abscess seems like 30+ml a day or so and sometimes its super dark brown stuff and have some crappy leg pain. GI docs say this is all caused from my chrones which I need to get under control. I've tried remicade 2 times and had horrible reactions. So now they are treating me with Cimzia I believe. It's the shot every couple of weeks.

Any kind of advice from anyone reading this would help?? GI docs have looked at me, Infectious disease and Surgeons and no one seems to have a real solution. I don't want to end up getting surgery cuz I've heard I could lose my colon. Just wondering if there's hope for me!?

Heya,

Yeah all that sucks, I'm sorry your going through this.

Is there some reason your GI isn't going with the ol tried and true "Big Prednisone" dosage to get control of a flare?

Cause based off what I read they appear to think it is because of yoru crohns yet only on cymzia?

You should continue talking to your Doc about medications to control the crohns, unless you didn't list them here, or get a GI who will talk about other medication if the ones you are currently with have truly exauaghsted all their mental options.

Sorry

Jon

quick add

I did not see any mention of other common crohns meds, humira, pentassa, entocort, imuran, etc

Has your Gi brought up nay of these for geting your crohns under control?

Although I do not have any experience with abscesses or fistuals, my Crohn's was very hard to get under control in the beginning. Where is your Crohn's located? If it is in the colon, have you tried the Rowasa enemas? They work great for me. I also suggest complimenting modern medicine with diet and natural products. Have you tried the SCD diet? Many people have good luck with it. Although I dont stay on it long term, I use it to get myself back into remission rather than Prednisone since I now have steroid induced AVN. There are also many natural products such as probiotics ( I use Critical care flora from whole foods), boswellia, bee propolis, fish oil, D3 that other members, including myself, have had good luck with also. Another option is LDN. I also eat only organic food and purify my water to filter contaminants. Finally, I manage my stress with xanax, because stress is a big trigger for my Crohn's.
I hope some of these suggestions help!
Take care!