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descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 11/3/2007 5:10 PM (GMT -7)   
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....
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


HuskerFan
Regular Member


Date Joined May 2007
Total Posts : 79
   Posted 11/3/2007 5:21 PM (GMT -7)   
Wow....you sure do have a lot going on ! I can completely understand your difficulties with your fistula...As I have one myself. The plug surgery has a high success rate of healing your fistula (mine did not work as my fistula is very long and wide). I would have the surgery first and then wait and see what goes on. My Colon and REctal surgeon did not recommend me taking Remicade until I had already had 2 surgeries...and he was getting to the point that he thought the inflammation in my rectum and colon was getting soo bad that he might have to give me a temporary bag.

The seton drain is not pretty as I have one...What do you do to take care of it daily? I take baths daily...and wear an always pad that tends to keep the surface of the pad dry ....so my skin does not get irritated...but yeah I cant go out and walk for miles on end...every now and again..is ok...but I just have to be careful.

I had Crohns for 6 months before my docs even agreed I could start taking remicade. Are you on anything else besides Pentasa?
Mis-diagnosed for two years--doctors thought I had RA!

Fistua surgeries in Sept 2006,Dec 2006 and Aug 2007
Centon placed in fistula track during last surgery..permanent open wound
Finally diagnosed w/CD & Fistulizing Disease in Jan 2007
Currently taking Remicade since May 2007


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 11/3/2007 5:50 PM (GMT -7)   
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
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


HuskerFan
Regular Member


Date Joined May 2007
Total Posts : 79
   Posted 11/3/2007 6:02 PM (GMT -7)   
My doctor did the plug surgery and mine did not take. I had to have a fistualtomy but he could not do the full one as my doctor could not guarantee that I would be continent after the surgery....So..mine is open. My surgeon did not have the requirement to be put on remicade for the plug surgery...my question for the surgeon is Why does he want you to be on that drug first? I mean ....why not do the surgery...see if that helps...and go from there. Imuran is a good drug for fistulas as well....

Anyway....YES if I do too much it hurts to sit down...it hurts to get up...and even just walk....but honestly...my surgeon seems to be progressive...he has noticed that the remicade I have been on for the past 6 months has closed up some of my fistula...and we are hoping it will close it completely...He does use liquid nitrogen about every 3 months on my fistula opening to burn off scare tissue that is building up ...and that SOOO helps.....NOW...for 3-5 mins...I have a pretty painful experience...but man...to live with hardly any pain is worth it to me...

I am sorry about your fissures...those sound awful... And yes baths do help! I take one daily.\

I sure hope you start feeling better..
Mis-diagnosed for two years--doctors thought I had RA!

Fistua surgeries in Sept 2006,Dec 2006 and Aug 2007
Centon placed in fistula track during last surgery..permanent open wound
Finally diagnosed w/CD & Fistulizing Disease in Jan 2007
Currently taking Remicade since May 2007


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 11/3/2007 11:20 PM (GMT -7)   
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
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/4/2007 3:38 AM (GMT -7)   
Hi Descrapster,
Sorry you are going through so much. I have been on Remicade for over 2 years and in remission. I
also have not had fistulas and can't give advice on that. My prayers are with you.
teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/4/2007 9:32 AM (GMT -7)   
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.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/4/2007 1:03 PM (GMT -7)   
I agree with judyk89 about the surgical consult for the temp. ostomy. After reading your post, I think that is what I would do. Also, I am pretty sure that ladies can have babies with one.

about the drainage from your fistula....ditch the maxi pads, and use a 4x4 gauze sponge. You can buy these at walmart or anywhere, but I buy mine at a medical supply store. They are much cheaper there. I use the Star Line brand I believe it is called, and it is 12 ply. I take 2 of them, fold them in half, and put them right in my butt crack against the fistula. I then change them whenever I need which is usually just a few times a day.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/4/2007 2:12 PM (GMT -7)   
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

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/4/2007 9:29 PM (GMT -7)   
I have never had a fissure/fistula but it sure sounds as though those are two things to address first. Judy's idea sounds very plausible to me too. I did the Remicade and was satisfied with it totally until I built antibodies to it. As for the cervical cancer risk and the baby. Well for me, and I know you want your "OWN" child, however, you need to get your health under control. Cervical cancer may change your option of having your own baby...but there are sooo very many children that need a mother or maybe you could freeze your eggs prior to the remicade, get your health under control and try to carry later. It has been stated that imuran is great for fissue/fistulas. I have been on it since Dx and as I can attest to, still have not had fissure/fistulas. I would be more concerned about the imuran than the remicade if I were trying to get pregnant though. As to your husband...this disease is NOT going to go away. It doesn't go away on even the strongest drugs. The drugs only help control symptoms and inflamation. He may be in denial about your disease given your aunt's experiences. Each CD case is different. Of course while you are trying to make the best decision possible for every one concerned,
you definetly need to concentrate on "YOU" first and deal with everyone else's emotions (husband included), second. I know this is SO very hard for you but once you get your symptoms under some kind of control maybe your decision will be easier or clearer as to what course to take. All the pain you are in surely is magnifying your emotions and stress levels to the max right now . Meanwhile, get that husband some more education about our disease. You two have a long road ahead and he needs to understand exactly what is ahead whether you choose to have children or not. Thoughts and prayers are always here for you...Good luck to you both...
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 11/4/2007 9:55 PM (GMT -7)   
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.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


JUMPER
Regular Member


Date Joined Feb 2007
Total Posts : 74
   Posted 11/4/2007 11:27 PM (GMT -7)   

Hi there,

 

I went through similair issues.  I as well had 2 fistualas and an abcess.  Talk too your GI about going on Imuran (Azoprine) something lioke that I went on that for some time and a good dose of antibiotics can't remember the 2 and this totaly got rid of my fistulas as well I had my abcess drianed prior to this and it never came back.  I am currrently on 3 mg of Entocort a day great drug.

 

Hope for the best for ya keep your head up.  I know I have been there and now have been in remission for 2 years.  I am a 34 year old male from Canada.

Free to offer any advice anytime

 

Chow

Jay


That which does not kill us makes us stronger.
Friedrich Nietzsche


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 11/5/2007 7:38 AM (GMT -7)   
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!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 11/5/2007 9:26 AM (GMT -7)   
I just wanted to give you a big hug (((((descrapster))))))
It sounds like you are having such a rough time right now... I hope you get through this, you can do it... everyone here is pulling for you!!!
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...

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