Me and the Disease

[Kacey]

Hi, I am new here, but certainly not new to crohns disease. I am a 26 year old female, diagnosed in 03' after a long process of elimination.
My usual, main symptoms are abdominal pain, anemia, and bouts of D and C from time to time. I have been on Prednisone, Imuran, Pentasa, and now it looks as
though they will be placing me on Remicade, which scares me to death.
I already have my own hypochondriac issues of cancers, and other fatal illnesses, so the idea of long term treatment such as this scares me. I feel as though I have been in denial about the disease since diagnosis b/c I am not your typical crohns patient. I get canker sores, pain and weakness, low blood pressure (from anemia) and like I said the OCCASIONAL constipation/diarrhea. It seems as though the majority gets the diarrhea and the innablitly to leave home when flaring. I have almost always been able to live with it, on meds or not. I feel like I have a mild manageable illness without meds but obviously I don't if I am flaring and bleeding from the inside. I have had every test possible, colonoscopies and sigmoidoscopies too. Everytime they find inflammation, ulcers and bleeding. Does anyone else feel or live like this. I completely understand that most don't, but i guess I am just looking for someone who I can relate to. I talked to my remicade rep, she is trying to assist me in making the decision to go through with treatment or not. I hate side effects, they often feel worse than the disease for me. No one in my family understands me, they just hear "crohns" "ulcers" "anemia" and assume that if I don't do what the doc says that I am going to die or something. denial, denial, denial...LOL, I need a relaity check but I don't want one.

 

[imisspopcorn]

:welcome: Kacey...I love Remicade! I am feeling the best I have in many years. Please check out the Remicade club thread in the treatment section.

For many years I lived with this disease thinking I had only a mild case. Which, at the time, it was. I got lax in taking my meds and even thought I was cured...Ha Ha..I laugh at myself now....My advice is to nip things in the bud before they blossom into something that is dibilitating.

There is tons of great info here and a lot of supportive people. Also, if you need a good laugh or just want to vent, we are here to listen. If you have any questions regarding Remicade just ask.

 

[Peaches]

:welcome: Kacey! So - I'm guessing that the Imuran doesn't seem to be doing the trick which is why they are suggesting the Remicade? The only thing I can say - which I tend to always say to people when they are hedging on meds - is that if you have this low level of inflammation, ulcers and bleeding going on - that is the stuff that can cause scar tissue and narrowing that can lead you to an obstruction or even surgery. So, even though it doesn't feel or seem like much is going on - it is important to keep that disease process quiet if possible.

I have been on Remi for 5 years now. The only side effect I have had has been an unexplained rash over the last 6 months that the dermatologist is attributing *possibly* to the Remicade. Other than that - it has been a great drug for me when nothing else was working. I do get periodic headaches the day of my infusions sometimes, and I am pretty tired after the infusion until the next day - but not everyone reacts this way.

There is a Remicade Club thread here that you can search for - it will give you lots of info. Let us know if there are any other questions you might have!

 

[Kacey]

HAHAHAHA-"Imisspopcorn" LOVE the name!! I DO TOOOOO!!!!!
Thanks so much, it is so nice to hear this from people who are like me!
I don't know anyone with crohns, and up until the last year, I ignored much of the condition because I was careless, and like I said, in partial denial.
I had my son 9 months ago, my pregnancy was terrific. I had never felt so healthy. A few months after delivery, the pain started to flare again...But now, with a son, I am worried and care much more about my health. Imuran is not working, it never really did. I am too thin, worried about my weight. Any suggestions for puttin on the beef? lol, I have always been thin, but things are fitting extra baggy latey.
I will definitely check out the remicade club! thanks again, both of you.

 

[Peaches]

I want to say do a search on gaining weight and you should come up with some stuff - but also poke around in the food section as I believe there have been a few threads on this topic. Many people have this issue - so welcome to the club with that! Sooo glad your pregnancy was a quiet one - that is always a lucky thing!

 

[chelli]

Your story sounds alot like mine. I always believed that my disease was mild at best. I only had some bleeding from my stomach in the very begining. My Crohn's is mainly in my stomach. I also get the sores in my mouth.

My case became steroid dependant so I would start flairing when I reached the dose of 25mg of pred. Remicade really is nothing to fear. I tried that but it didn't work for me. I am currently on Methotrexate, one injection per week. This seems to be working for me as it feels like I might possibly be in remission???

Good luck to you.

 

[CrohnsHobo]

Welcome Kacey!

 

[farm]

Welcome, I too love Remicade!! Don't worry!

 

[Pirate]

Kacey, welcome to the forum.

I have had CD since 1986- DX. I have went from a lot of bleeding, weight loss, big D and a lot of pain to feeling great for a number of years to D-C, weight loss, pain and loss of energy. In the last 3-4 monthes I have lost around 25 lbs, been in a lot of pain, doing the liquid diet to low residue to soft and back to liquid.
I've never had surgery and have stayed of the big gun treatments-- until now. I was told that I either had to do Remicade or Humira. Well I was scared to death of the side effects of both and have been putting it off on which to start. What really helped me lose my fear was these guys. If it wouldn't have been for finding this forum and these great friends I probably would have drug my feet for ever. But Peaches and Imisspopcorn and others have really been lifesavers.

I've had CD longer than almost all of the people here but most of them know so much more about the newer treatment and procedures. I had went so long without any flare-ups that required special treatment and had not paid attention to all the new research findings. With this new flare-up I was totally devastated.

I will be tapering of my Entocort starting Friday and than will be going on Remicade. I know that if I don't do something the scar tissue will get worse and than I will have to have surgery. That scares me.

Good luck and sorry for rambling, but these guys are great and they are part of my family now.

 

[tamesis]

Welcome!
This is a great place for advice, and support. I haven't been on here long, but in my quest for a diagnosis for my symptoms i am extrememly grateful to have found it!