Help! Very long but please read!

The walls of this disease feel like they are closing in...I am writing this to ask for your input on my situation so that my husband can have some understanding of what battles I have to face emotionally.  I was diagnosed in June of this year with Crohn's.  I have felt sick for the last 10-15 years with the symptoms of what I thought were IBS.  In August of 06 I developed an abscess which later turned into a fistula.  I had that for almost a year until early June of this year wherein I developed 2 fissures within 2 weeks of each other.  I was diagnosed thanks to those fissures.  Since June it has been nothing but pain daily.  I don't go to the bathroom without pain. The fistula is painful.  The fissures are a killer.  A week after I was diagnosed with Crohn's, my OBGYN's office called to advise me that I have cervical dysplacia...abnormal cells that can eventually turn into cervical cancer.  My Colo-rectal wants me to start remicade and to have a plug put into the fistula to see if it will heal.  There is the risk of that rare lymphoma.  My family has a very very very long history of cancer.  One grandmother had breast cancer, one grandmother has lymphoma.  I can't even begin to tell you how many other distant family members have died or are dying of cancer.  I want to get pregnant.  We were in the process of trying when this diagnosis came about.  No one knows the long term effects of remicade on babies and although many many women have had normal babies, everyone keeps bringing up the fact that the long term effects are not known.  There is also the fact that Remicade is an immune-suppresant drug and since I need my body to fight off the virus that is causing my cervical dysplacia if I do take the medication, I am at an even greater risk of developing the cervical cancer.  My Husband thinks that this disease will go away on it's own.  My aunt had a resection 20 years ago and thank god has been free of any flares for the last 20 years.  I know if and once I go on remicade and it works, I would have to stay on it.  My husband thinks we should wait however long it takes to get it under control without medication before we have kids even if it means years.  He says that it's better to not have kids then it is for me to have the chance of leaving my kids without a mother because this medication might cause cancer.  I am in a never ending cicle!  I am waiting until my next pap smear to speak to my OBGYN about it.  I want to give my body as much time as i can to fight off the dysplacia.  I feel like this disease has taken away so much of my quality of life that it's now starting to stop my life.  I can deal with going to the bathroom 20 times a day and the stomach pains but I can't deal with the fistula and fissures.  It effects everything.  I can't walk for long periods of time because the fistula leaks and my butt gets really burned and sore.  My Fissures give me pain for hours after I go to the bathroom.  Getting up from a chair takes work.  I try to have a good outlook but it just seems like it's one thing after another and when you are in constant pain it's makes everything seem twice as bad as it really is.  I feel selfish because so many of you are going through far worse than I am but right now it seems like my life is coming to a stand still because of this.  I don't have options besides Remicade for the fissures and fistula so will I always be like this??  If I do take the Remicade and the dysplacia gets worse which they told me is likely then I would have to stop or get cancer.  If I don't take it then is this what my life is going to be like? This is notany  way for a person to live.  I am 25 years old.  My life is just supposed to be starting not feeling like it's ending....

Hi, I am not sure what you meant by the dr. wanting you to have 2 surgeries before going on remicade. Did you mean plug surgeries? My dr. doesn't want to do the plug without the remicade. I have heard of a lot of people getting more abscesses and fistulas with the plug. My drain only bothers me when It gets caught in one of the fissures (totally NOT fun!) I also take baths of really HOT water. It's the only thing that helps. I hate wearing pads because my skin is very sensitive so I usually get burned very easily and even with the pad the leaking usually stays between my butt cheeks since it's not alot. Grocery shopping is too much of a long walk for me. I always walk out of there dying of the pain! I am not on anything else. I was just in a flare and my dr. suggested Prednisone. I went on a liquid diet for a week and I was able to quiet it down on my own without it so I was happy about that. Right now I just have a lot of mucous and I am going to the bathroom 3-4 times a day but it's not diarrhea whatsoever so i'm a little confused. I am going to call the Dr. on Monday and see what he thinks. I don't feel like it's a flare but it's not normal either. I guess it's just one more mystery to add to the pile! What are your doctors suggesting you do with your fistula? Will it always remain an open wound with the drain? Does your Fistula ever just hurt to the point that getting up and sitting down is trouble?

Descrapster,
Honey, I can't imagine having to face all this at 25. I have never had fistulas so I can't give you any advice....but I will tell you that you are in my prayers....top of the list. I pray that you find rest, peace, answers to your questions and speedy solutions to all this....most of all , I pray that you get well soon , and are able to have the family that you want. God Bless you .
Love and prayers,'
Mary

If you're so scared to go on the Remicade, why don't you ask your doctor for a surgical consult to talk about a temporary ostomy to divert the stool away from the rectum area and give your fistulas a chance to heal. This is the way it was done for many years, and it works for most people. This type of surgery will buy you time, but if you reconnect, your fistulas may come back. But if you do the Remicade then stop, the fistulas may come back also.

It's just another option that most doctors don't think of these days, but I did it, and while I had a hard time at first with the body image, I chose to never reconnect because my life is so much better.

Hi It sounds to me that you are feeling kind of at the end of your rope with the Fist. and fiss. so perhaps you should focus on that for now. Does the DR. know how long it might be if you did get cancer? Does she think that you will be fit for a baby if you get rid of the F&F . These are things I would want to know. If the Rem. does heal you will you be able to have a baby? I know your H has many concerns too and it is hard making decisions about your life let alone your H 's and a child's. I guess to me I think find out what is the best treatment to have if it is a baby you want. lol gail

Aren't there good treatments for cervical dysplasia? Matter of fact, I looked it up. http://www.healthology.com/gynecologic-health/gynecologic-health-information/article3627.htm?pg=1 Women can go on to have successful pregnancies after treatment. I would try to clear that aspect up before considering remicade. As soon as I read "leep procedure", I remembered that I know 2 women who had that procedure done and they are fine. It sure seems like you have a lot on your plate right now, but try to take one thing at a time. I was very reluctant to try remicade also, but quality of life is so important. I reacted to it and am now on humira, and also starting to feel better. I will try most anything to get off pred, it is so damaging. Good luck to you, this is a great place to get opinions/advice.

Thank you everyone for your prayers and thoughts!

Judy- The doc thinks the temp. ostomy is sort of a last resort. The fissures have gotten better than they were 3 months ago so she prefers that they start to heal on their own. The ostomy has complications in itself so we are trying to push it out as far as possible.

Chronie- THanks for the gauze tip, I will try that.

Gachrons- The docs tell me that I am fit for a baby only as long as my flares have been under control for atleast 6 months. The fissures and fistula won't affect my pregnancy, I am the one that can't imagine carrying around all that extra weight and pressure down there. There is no timeline for when they expect the cancer to develop. It's a wait and see game. I have to go for paps every 3-4 months to monitor it. What worries my colo-rectal about all this is my very long family history of cancer. It's easier for me develop it if I am pre-disposed to it.

Tinglebell- The leep procedure is an option but not for me right now. I am in the early stages of dysplacia so my body is the one who needs to fight it off right now.

Thank you again for all your kind words and prayers, you don't know how much I needed them!