HerStory

[SammyAnny]

Hi y'all. My name is Sammy, and I was dx'd with Crohn's in 1997 in the ileum region. Took them over a year to figure it out after finding a painful lump on perianal region. Turned out to be a fistula, running between my uterus and my rectum, and was almost 2 inches in diameter. This was the beginning of my long journey with Crohn's and intro to living with reocurring fistulas. Surgery cleaned out the 6inch long abscess but left the first of my fistula drains. Had a silk thread tied to the tear in my colon and then it ran the distance of the fistula and was tied off again on my skin. This was hell. An opening from my colon directly to the outside world?? I went monthly for a year to have acid put on the outside to kill off the proudflesh that would grow. I re-abscessed about 8 months into the drain, and had to undergo another surgery, and get yet another drain. My body didn't react too well to silk apparantly, so they tried a different type, but honestly, I don't recall what it was. Needless to say, another year of monthly visits burning the skin on my butt went by, and I began to realize the doctor I had was using me as a guiney pig..so I found a different doctor who then did a 'staged fistulotomy' where he used a plastic string, fishing line if you will, and tied it so that each month I went in, and he would tighten the line, and it began healing the fistula from the inside out. After a years worth of that, I was able to have the drain removed, and in 2000 I was drain free.

I have been so anemic I had to have iron infusions weekly. Almost died from a reaction to Iron Dextran. I have taken Prednisone (reacted badly), Pentasa(worked for a short time), Flagyl (extreme body pain), Remicade (remission for 9 mos with first dose, but reacted to second dose with chest tightening), Entocort, various other antiobiotics, and countless pain meds.
I continuosly get fistulas still, that break away and surface themselves, then burst like abscesses do. Then they go away. I have gone years without any, then they come in bunches...

I go a few years or more between flare ups, doing what I can with managing diet and vitamins. But as we all know, Crohn's has it's own agenda. I landed in the hospital in 2006 after feeling like I had the flu, but it was a flare up that gave me a temp of 106 that I managed to get through an hour of. Some brain damage after, but 99% recovered from that. Made it without any surgery. Recovered and have been fine, until now.

Current issues revealed that it has developed in my colon as well. And I can't eat more than a few ounces at a time, a couple times a day. I started to drink yogurt with Prebiotics and Probiotics again, and making sure I get some proteins and my multivitamins. So far a scrambled egg or a few slices of lunch meat are about all I can eat.

Doctor wants me to take Cimzia, but all the research I have done scares the hell out of me. I would almost undergo the two or three resections I would need than to go through the hell I see people are going through on Cimzia. And why would I want to up my chances for Lymphoma??? We are already at a higher risk of Colon Cancer... Needless to say right now I am researching all of my current options, and would love anyone's input on their success stories.

I think I am a pretty tough cookie, but this disease can take the tough right out of you.

 

[Peaches]

:welcome: SammyAnny! War scars - shew!!! My very first thought before I hit the Cimzia comment was "why haven't they tried Humira or Cimzia?". I am also wondering why you only had 1 dose of Remicade in 9 months?? It is pretty well known that if you start taking Remicade (which I think is the best med for healing fistulae) - it is best to keep taking it so you don't create antibodies to get the type of reaction you got from the second infusion!! Did they premedicate you with an antihistamine as well as solumedrol (or steroids) before that second infusion?? Ah....sorry - so many questions! I would be much more scared of 3 resections with possible complications plus the loss of my much needed digestive tract than from taking Cimzia. I have been on Remicade for 5 years and it has been a *life saver* for me. We have lots of people here on Humira and a few on Cimzia.

Hope you can find something to keep your disease quiet - and glad you have joined us!

 

[imisspopcorn]

:welcome: SammyAnny.....Well, you have to the right place if you are seeking traditional and alternative treatments....Make sure you look around the treatment section. Tons of great info there. There are a few people on Cimizia with great results. It's hard not to worry about lymphomas, but quality of life is important too. Especially if you have exhausted all other options.

I really emphasize with people who have fistulas and abscesses. There are so many variables as to how this disease expresses itself.

I hope you stick around so we can get to know you better. Good luck with the decisions ahead.

 

[SammyAnny]

Thanks you guys. Peaches, I did a few infusions of Remicade, I think 3 was the recommended dosage at the time, it was still very new then. I went into Remission and had no need for more. So I didn't take it. I was a point away from a blood transfusion due to anemia and underwent iron infusions. My first dose was iron dextran, which damn near killed me. Literally, my lungs quit working and I felt my heart stopping. Needless to say I was taken care of, and they banned that form of iron from the hospital, I was their 'final straw'. So when it came time to do the next dose of Remicade, perhaps it was too close to my prior reaction (8 weeks of infusions prior to the Remicade), I had the beginnings of the same reaction I did to the iron, chest tightening and arm burning. So they shot me up with mad doses of Benadryl, and we decided Remicade was not an option at that time. I was put on Flagyl or some other one I don't play nicely with, so I continued to manage my diet and stay relatively healthy. It's hard to put all of my trials and tribulations into one post..LOL! As far as Cimzia, I went online and searched reviews for it, and have not found results I am okay with. I have such great doctors and surgeons here, some of the best in the country, so surgery is less scary to me than medications. I don't know much about Humira, except that it's a TNF blocker as well. Sometimes the cure is worse than the disease itself...

 

[Peaches]

Humira and Cimzia are the "sister" antiTNF drugs to Remicade. They are human derived versus Remicade which is mouse derived. That means they will have less of a chance of causing the anaphylaxis which is what you were experiencing. The Cimzia is peglated (not sure if I spelled that right) meaning it has an additive that makes it last longer in the body than Humira, so you give yourself the shot just once a month rather than ever other week. So, theoretically - if you were "ok" taking the Remicade - then you should be ok taking the Cimzia. And I would think that since you had a good response from the Remicade - I bet you'd have a good chance of having a response to the Cimzia as well.

I'm sure your docs are great. Most the time you hear of surgery being used only sparingly to remove disease with them trying to use medication to control the disease. Most docs don't want you ending up with short bowel syndrome or no colon because you weren't medicating your Crohn's.

 

[imisspopcorn]

I agree, you only have so much intestine....Now, if you are absolutely miserable, in pain. And the quality of your life is being affected so drastically, then surgery is the best option. My disease came back so fast right after I had surgery that I was put on Remicade, even though I probably could have tried a lesser treatment.

 

[shazamataz]

Welcome SammyAnny!
I can't offer much input here as I am still in the early stages and have no knowledge, really, of these treatments apart from the fact that here in New Zealand you cannot get Remicade and to get Hunira you need to be pretty much at death's door with no alternatives - ie surgery is not an option. Scares me a little if i may need it one day, but perhaps they will have moved forward a bit by then!
I have fistulas as well, but they are internal from the ileum and I have no idea if they have healed on their own or not! Seems they won;t scan you unless you are in agony, so I am hoping they have gone as the associated pain and fever is no longer there.
Anyway, I'm rambling about myself!
welcome to a great place, make yourself at home, it's full of awesome people and loads of information

 

[SammyAnny]

Thanks to all of you. Every opinion and thought process is taken into consideration. I really love hearing everyone's experiences, as we are all different in our disease. I am consulting with my Aunt today on some Homeopathic remedies, and have been taking probiotics and prebiotics with some noticeable improvement. Still can't eat much solids, but am incorporating protein powder with my yogurt drink. Even if that is what I have to do for the rest of my life, if it keeps me off the harsh meds and out of surgery, that will be just fine with me!

 

[Crohn's 35]

I hope that the natural stuff works for you , it did for me a for a spell. I dont blame you for avoiding harsh meds, and out of surgery. I wished it worked for me but VSL is helping me for the most part. Good luck, welcome btw!