New gal

[rottengut91]

I was Dx with Crohn's in 1991 (age:16) after I had emergency appendectomy. My appendix had erupted and my belly was full of infection. My surgeon failed to completely clean up infection and I subsequently developed an abdominal abscess. They tried to drain abscess through needle aspiration, but the mass had become solid. I had surgery to remove abscess and a portion of my terminal ileum. I woke up with an ileostomy. My experience with the ileostomy was a nightmare. My skin was allergic to the paper tape. I could never get a good seal, therefore, I had alot of leaks. Luckily it was only temporary, a few months later, I had my reversal surgery.

I was lucky and maintained remission for 11 years. Since then though, I have had flare-ups about every two years. I've had two bowel resections in the past six years. I recently developed a perianal abscess with a fistula. This too has been a pretty painful experience. I had the abscess surgically drained about three weeks ago, they also placed a seton loosely so that the fistula could continue to drain and continue to drain it does. The pain is not as severe as having the abscess closed, but there is still a moderate amount of pain. I am becoming increasingly frustrated with my current situation. :depressed: I have an appointment with my GI next week. My colo-rectal surgeon wants me to be scoped to see the current state of my Crohn's before he decides what the best approach is for my fistula. Before my last surgery, my GI and surgeon discussed the possibility of removing my colon, the surgeon decided it was not necessary once he got a good look inside. Now, I'm not sure I am going to get away with not having this done. I have not had much luck with many of the meds we've tried in the past. I absolutely refuse to go back on Pred. unless I have no other alternatives. I hate Prednisone. I makes me crazy, literally, I have anger issues. Not to mention, the swelling. I literally turn into a whole new person. The benefits, by far, do not outweigh the risks for me.
Anyway, right now, I wondering if my future contains having another stoma for the rest of my life. I am 36 years old, I do want lifetime relief, but I am also scared. :frown:
I have had Crohn's for almost 20 years now and this is the first time I have ever reached out for support. I have been reading posts and you guys seem like really great people. We live in a different world than most people experience. I feel connected to you all. It is good to know that I am not the only person who feels the way I do. :sun:

 

[Crohn's 35]

Hi rottengut welcome :bigwave: I have had 2 resections and could be headed for a 3rd. I know how you feel about having more surgery, scary huh. I am surprised you took 20 years to get support, because it is hard to be without support of people who fully understand your pain, scary times and want a better future, I am with you there. I am finishing up on Pred tomorrow, but have to take a flagyl every now and then or I will flare out. I am waiting for referrals because my current Gi will be retiring and need a surgeon to really think if I need surgery when and how.
Meds dont work for me either, like oil and water... glad you are here, hope you stick around and join in. Welcome!!

 

[seaofdreams]

Welcome to the forum Rottengut. Sorry you've had to find us under these circumstances but we're always happy to listen, give advice and generally be there for you through tough times.

I know what you mean with Prednisone, I genuinely question why I'm even on it. My stress levels go through the roof which I feel worsens my symptoms more than anything else. It doesn't relive my symptoms by much at all and gives me a whole new set of things to deal with.

What medications are you currently on?

 

[DustyKat]

Hi rottengut and :welcome:

It's good to see you found your way here. I'm so sorry you are dealing with so much at present. There are quite a few people on here that have been given their lives back following ostomy surgery, if you haven't already found it here is the link to the stoma subforum.................

http://www.crohnsforum.com/forumdisplay.php?f=46

This is a safe and friendly place with loads of support and info. Browse through the forums and if you have any questions please don't hesitate to ask. Stick around 'cause we would love to have you here, welcome aboard!

Take care,
Dusty

 

[rottengut91]

Thanks for the warm welcome!!

I too cannot believe it has taken me 20 years to gain support. I guess being diagnosed when Crohn's was not so main stream kind of made me keep things more to myself. Back then, no one understood what I was going through. I thought I had many friends, but I found that when I needed them most, they just weren't there. Since then I have just decided that I can't count on others for support. Don't get me wrong, my family has always been a great support system. My parents have always been there for me. My husband is also very supportive. I just don't reach out for friendship elsewhere, which I admit can lead to extreme lonliness at times. Even those that care about you the most cannot fully understand how you feel on a daily basis. The pain, the fears, well you know. The problems we face, most people don't openly discuss. It's not easy telling someone that you have a sore on you butthole and its leaking disgusting pus. :blush: I mean really, who wants to know that???? :ywow::ywow: It's very humiliating. :redface: Anyway, it's very comforting to know that I am not the only one facing such problems. I feel fortunate to have finally found a place to just come and unload some of these feelings I have kept to myself all these years. :ghug:
I just regained insurance coverage after being losing it five years ago. :thumright: I had to file bankruptcy after my last resection. :thumbdown: The medicals bills put me over $60,000 in debt. I haven't worked in the last five years either. I just got to the point that I couldn't handle working and taking care of the kids. This disease can make you feel so inadequate sometimes. I get so frustrated telling my kids "mommy doesn't feel well today". My kids are great though. My bedroom is more like the living room, we spend more time in here than any other room in the house.
The only meds I'm on right now are; Fluoxetine(gen. Prozac)-60 mg/day
Ultram- 80 mg/bid
Multi-vitamin + Calcium + Vit D

I just finished; Flagyl-500 mg/bid and Cipro-500 mg/tid. Because I haven't had insurance and couldn't pay medical bills, I lost my doctor during the past three years. I get my Fluoxetine and Ultram online w/o prescription. I absolutely could not live w/o either. Especially the anti-depressant. My mother passed away a year ago. :frown::frown: She was my best friend, maybe my only friend besides my husband and ex-husband(oddly, we remain close friends, better friends than lovers). It was a very long rough winter last year, but I finally feel the light at the end of the tunnel again as far as losing her is concerned. It's not easy not having her to talk about my CD problems with though. She was always there with all my other surgeries and hospitalizations, so doing it w/o her is quite a different experience. She was my rock, the best mother a daughter could ask for.
Boy, I can sure ramble on. You can sure tell I haven't had anyone to talk to for a long time. It feels great to get these thoughts and feelings out. Thanks for listening. :sun:

 

[acg101]

Hi and welcome to our forum. Sorry to hear about your bout with Crohn's. As you will see, there are many of us here who experienced similar journey and hopefuly could be of help to you.

Like you, I have suffered for many years and had severe pain, all the meds you can think of, natural remedies, you name it.
Finally I had enough, and in January 2010 I decided to have a total procto collectomy (TPC) which I had done in July. I was nervous at first, but with help of people here and tons of research to find the right surgeon and hospital, I did it.

Now I have a life. no more pain, no more meds, no more bathroom runs and I can eat whatever I want. I execise, travel and have fun.
Yes, it took me few weeks to get use to the stoma, I I had few leaks, but the benefit is so great.
Sorry about your mother.
Good luck.

 

[rottengut91]

Thanks Dan,
No more pain, no more meds, no more bathroom runs...sounds like a dream come true. Being able to eat anything and exercise again sounds amazing too. Things have probably changed since I had my ileostomy (1991-1992). If my future includes another one, hopefully my experience is better. Now that I am older and married, of course I have fears about intimacy. What are your thoughts on that issue.

 

[acg101]

Yes, I am sure things changed in the past 20 years. Basically - one needs to adjust to the new reality but as long as you are open and have an open minded partner there are no problems. of course male/female deal with somewhat different challenges. Please dont hesitate to PM me if you have specific question .

 

[Astra]

Hi Julie
and welcome

I'm so sorry for all the stuff that's happening to you, things must be tough. I lost my mum 4 months ago too, I can totally relate.
I also hate Pred, I'm on my second round of it, but it's the only thing that has worked so far this year after a stint in hospital back in Jan.
It does feel great to get all this stuff out, that much is true! So let it out sister! We're all here for you! Glad you found us, hope you stick around.
lotsa luv
Joan xxx

 

[rottengut91]

Thanks Joan!! Everyone on here is amazing. I feel a kinship with so many of you already.
Sorry to hear about your mum. I hope you were lucky like me and had a wonderful relationship with your mother. Mine was the best. I miss her dearly.