- Joined
- Feb 1, 2015
- Messages
- 4
Hi all I've had crohns for 20 years now coming up, started when I was young, hopefully what I share can help some of you. All the symptoms of crohns I've had perineal abscesses and fistula about 10 years ago, it's hard to deal with the pain and emotional stress that comes with it, but I truly believe the right surgeon is the best step after 9 unsuccessful surgeries and experimenting with every drug I could to help. Found a semi-retired surgeon whom said that this would be the last of it after 5 years of suffering he did what others simply seemed to fail at, I had 3 abscess superficial and one fistula tract, by de-bridging tissue down further then any other surgeon would I believe made all the difference and it healed over with no reoccurrence which I'm grateful for and understand is not always a success. I honestly wish I would have found him earlier and pushed harder to figure out a solution living with it is not one and there are ways these professionals can aggressively help but I find that sometimes a sick patient under control is better for the system then a cured one, which Im sure you all know in some way. I now am suffering from a high out fistula that's draining from my abdomen below my belly button which is a connection from small bowel to skin that formed spontaneously, it's extremly painful fecal matter, gasses, pus, blood, coming out a pen hole size unnaturally would be for anyone. I figured I would learn from my past but when you're sick you don't think straight and it's been a year coming on the second year now, which is too long and has taken it's toll on me, what doesn't kill you makes you stronger is true. In this case Ive had a perk drain, then debridgin tissue carefully down to bowel, also exhausted the medicine side of it Humira once a week along with methotrexate, and standard flagyl and cipro, also light cortisteriod along with it. Need a resection done with possible stoma like always, I should have done it sooner and a lot of times Docotors are reluctant to send you off to surgery because some have success the medical route with closure and healing of the fistula tract, but I believe that was a hopeless one when its high out put chances are much slimer it may only slow down drainage. If you're draining above 200 ml daily I think chance are a resection is the best option at that point. I have surgery for next week it's been a long wait and I'm sure there's more to come. It's a daily battle and the way I see it is you can give in or fight on and be strong hope all of you have better days to come and I will be after this surgery trying a new drug for crohns that has promise of cure that was found accidentally with patients whom had cancer and the ones with underlying crohns had significant symptom changes quickly. The study proved that a huge percentage went into remission and no reoccurrence of the disease which has some promise from what I know so far it is some sort of bacteria, I will obviously be on here if there is any success I also find that medicines like this are kept in the dark and only available to those that are financially capable because not covered by any drug plans. All the best to everyone and stay strong 
