About me:

[dluke26]

SO I thought I'd just take a minute and introduce myself...I'm hoping to keep it short but no promises! I am a 36 year old mother of 2 teenage girls! If that's not stressful, umm I mean exhillarating enough I also battle with crohn's. I was diagnosed in 1995 and in March of 95 had a resection, after that i was in remission until I got pregnant with my 2nd child. In 2002 I was on remicade for 8 months, during that time I had 8 infusions and after the 8th I had a horrible reaction and lost my hair and had severe excema on my hads and feet...it took almost a year for all the skin to grow back. Luckily I can say that for about 7 years I had no trouble with crohn's. In the last year and a half I have been having trouble again but could not get my dr to listen to me and refer me to a new gastro doc because my former doctor was no longer practicing locally. I finally ended up at the er in severe pain about a month ago since then I have had a colonoscopy, small bowel follow thru, more trips to the er for fluids and several xrays. I will be going into the hospital for another resectioning on Monday and the dr told me to be prepared to be there for at least a week. I can't say I'm looking forward to it but I can't wait to feel better again!! What I guess I'm looking for by being on here is a place to talk to others who understand what life is like, I have been told by my family (not the kids) that crohn's is not really that big of a deal and neither is surgery and that if I am feeling really bad I must have done something wrong to cause it. I don't think it's meant to be harsh or unfeeling I think it's just a case of the disease being misunderstood. I really look forward to getting to know others with these same issues!

Ok...guess I didn't keep it all that short - but thanks for letting me vent!

DLL

 

[georgiegirl]

Hi, and :welcome:

You've come to the right place if you want to vent!!! Everyone here is so supportive and knowledgeable.

I have to say, your family sounds pretty harsh if they think you're not really that sick, and if they think you've done this to yourself! Of course surgery is a big deal, and of course this is a serious disease - otherwise doctors wouldn't have decided to remove a piece of you!!! Don't listen to them if they can't understand - it will only make you more stressed.

Anyway, best of luck with your op - hope you have many years of remission ahead!

 

[DustyKat]

Hi DLL and :welcome:

I'm glad you found your way here. Whoa that was some reaction to Remicade, !!! Thank goodness you eventually overcame it. Were you on any meds in those 7 years after the Remicade?

I wish you all the luck in the world with your very soon to be surgery. Sorry to hear about the reactions of some of your family and you are certainly not alone with that one! This is a fab place with loads of support and info and you will find many people here that know exactly what are you feeling and going through. Please stay around 'cause we would love to have you here. Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Welcome DLL!! I agree with georgiegirl!! If parts of your intestines are being removed, it's a big deal!!! Here's to the best outcome with your upcoming surgery!! Good luck!!

 

[Astra]

Hi DLuke
and welcome

You've got a nice family! NOT! It's this type of ignorance that we Crohnies have to put up with on a daily basis, people need to be informed, and be aware, surgery is a big deal for a kick off!
Good Luck with the surgery on Monday, hope it goes well, come back and let us know how you are!
Lotsa luv
Joan xxx

 

[rottengut91]

Hey DLL
What's that old adage, "you can't judge a book by it's cover", that so applies to us doesn't it. Probably many other people as well. Most assume because you look relatively normal on the outside, that inside you not suffering. Ignorance. That's all it boils down to. But if you think about it, were all guilty of this from time to time. This seems very common among families though. Maybe there's a bit of jealousy involved, as the focus is not always on them any longer? Who knows. I can tell you, my mother was ill for several years before her passing. I was in denial of the severity of her illness for many of those years. That allowed me to think that sometimes she was over-exaggerating her symptoms. I just always see my mom as this strong individual. It wasn't easy to see her suffering.
Our stories sound very similiar. I was dx in '91 at the age of 16. That's when I had my first resection. I went into remission until after my son's birth in '02. I was not on any meds during that time either. I suffered a terrible flare and again had to have another resection. I did pretty good until after my daughter's birth in '05, then had yet another resection. Surgery always brings about relief for me. I am now in another terrible flare. My CR surgeon is very reluctant to do another resection. I understand, but I also know the relief it brings for me. I just started Humira. I really hope it helps. I am bit skeptical because of my history of stricturing. I know that no amount of medication will reverse severe narrowing caused by scar tissue. I'm ready to live my life again. I don't want to be on this med for months, only to discover it's not helping, then have to have surgery anyway. You know. My thoughts are to remove the diseased portion of bowel, then go on the Humira for maintenance. The problem is, I also have a perianal fistula. Both my GI and CR want to get this booger healed so that they can remove the seton. The Humira is supposed to help with that. I'm trying to remain optimistic.
Anyway, I'm glad you found your way here. Suffering in silence is not necessary any longer. We all go through similiar difficulties on a day to day basis. It's relieving to have a place to come and vent, gather infor and support from those who understand. I've been on a short time now and have learned a great deal. Hope you stick around. See ya.

Oh, sorry this reply is so long, sometimes I can be a little long-winded.

 

[archie]

good luck tomorrow, keep us posted

 

[dluke26]

Thanks for all the support and well wishes! It's very appreciated!

No Dusty, I wasn't on any meds for the 8 years after the remicade so in that aspect I am pretty lucky. I will admit that I am not always commited to taking a pill every day so I'm glad I didn't have to but I would have if I needed to.

Julie, they were talking about putting me on Humira also but my GI was concerned that if I had to have surgery anyway then it's a med that I probably would have a reaction to if I started taking it then stopped for surgery and then tried to start it again. Since the med choices are so few he didn't want to take the risk of me having a reaction and having one less to choose from. Best of luck to you though...I totally understand wanting resection as opposed to months of meds that may not work! Please let me know how you do!

As far as the family thing goes, I think I understand where the harsh attitude is coming from. Part of it is ignorance (even tho he once knew someone who knew someone with crohns and is now an expert haha) and the other is fear. His dad went in for surgery for a GI problem and found how he had cancer and died a few days later so I can understand that it's probably the stress that is talking but at the same time I kinda want to act like a baby and say this is an about me moment and I shouldn't be haviing to try to make it easier for you! Yes, I know I can be a brat sometimes!


Thanks again for all the well wishes and the welcomes! I think I'm gonna like it here!