Hi From Debbie

Hi All
I am new to the forum, but have 31 years of UC/Crohns "under my belt".
I was dx 31 years ago with UC, after 13 years of high dose pred and no real remission I had a colectomy/j-pouch (two stage surgery, ilio for 5 months before takedown). I was very lucky that my pouch was great, almost "normal" again, for about 14 years. Started getting sick again and dx with pouchitis. Cipro worked ok, but then stopped and got really bad again...diarhe many many times/day. Dx crohn's about 2 years ago and I feel like I have been living in Hell.

Been on so many meds I give up remembering them. Nothing helps the diahrea, not immodium, levbid, or even codeine! My lfe is revolving around bathrooms again, and my world is getting smaller and smaller. I feel like I am becoming my disease as it is never far from my mind. I am a mental health counselor, and it is sometimes very difficult to practice because on the really bad days my concentration is so off. It doesn't help that my sleep is so fragmented with bathroom trips every 90 minutes or so all night. I really wonder how I can function at all! It is amazing how we can adapt to almost anything.

I have just started on 6MP and I am really hoping that I may have improvement, though it is a really scary drug. I have already battled breast cancer and kidney cancer so I really worry. My family and friends are quite supportive, but, as you know, they can't REALLY understand. I am so glad to have found this forum! I can really be with folks who KNOW.

I am also fighting some awful hemmies. Seeing my surgeon next week about them, and hoping that the "thing" sticking out this past month is only a prolapsed one and not something really terrible. Keep your fingers crossed for me please.

Well, this was just going to be a "brief" intro! Sorry for the long post. See you in the forums!
Debbie

Hi, Debbie, and welcome to the forum!

I'm so sorry to hear that things have been so challenging. You've gotten yourself through so much -- and then each time, something new has come along. I'm confident that you will find ways to thrive even as the world around seems to shrink. (If it helps, one of my workarounds has been to have friends over to my place, and get them to help cook, when I'm too sick to go out and socialize...they get supper and one of my fun desserts, and I get help with cooking, and some company to boot.)

You will absolutely find people here who have had similar experiences to you, and I'm with you that it's so nice having people who just GET IT without you needing to say anything. Ex: Don't get me started on hemmies (ouch!). That said, I love that our friends and family don't need to understand - they can simply support us as we are. I wouldn't want them to know many of the gory details!!!! *blushes* (Maybe that's just me, lol.)

Hi Debbie

Welcome to the forum. :welcome: In your life you have coped with a lot. It's great that you have found us, I'm sure you'll make some great new friends.

Good morning and welcome x

Hi Debbie and :welcome:

Wow you have been through a lot and I'm sorry to hear that you are in another rough patch. I'm glad you found us and there are loads of friendly and experienced people hanging out here. I hope you stick around as you have loads of experience yourself, so we could use you too! :ybiggrin:

Welcome aboard!

Take care,
Dusty

Hi and Welcome! You've been through the mill a lot! Everything crossed for you that you get sorted quickly!!! :hug:

Hi Deb, welcome!! My little boy has been on 6mp since early this year and has had no ill effects from it. I agree that the possible side effects are very scary. He had a blood test to determine his body's ability to metabolize 6mp before he was started on it. Have you been tested for that? You've got a lot of experience, I hope you stick around.

Hi Debbie,

Welcome to the Forum!

Lucinda x

Hi Debbie
and welcome
where are you from?

You sound like you've been thro quite a lot! really hope the 6MP works for you after exhausting all other meds. have they considered the biologics too?
stick with us, lots of friends here who really understand! Enjoy the forum
lotsa luv
Joan xxx

Dexky said:

Hi Deb, welcome!! My little boy has been on 6mp since early this year and has had no ill effects from it. I agree that the possible side effects are very scary. He had a blood test to determine his body's ability to metabolize 6mp before he was started on it. Have you been tested for that? You've got a lot of experience, I hope you stick around.

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Yes, I had the Prometheus genetic tests before starting the 6mp. Thanks for the encouragement!

Hi Debbie - Just wanted to give you an official welcome!

Welcome to the small but lovely "J Pouchers with Crohn's Club!"

xo - Amy

Debccmhc said:

Yes, I had the Prometheus genetic tests before starting the 6mp. Thanks for the encouragement!

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I'm already learning from you Deb I knew it had to have a name besides "that blood test to determine if his body could metabolize 6mp". Thanks.

Oh my gosh Deb, it really sounds like you've been through the mill! There's a few stories on here from people who are also very experienced and have been through so much so I'm sure you'll be able to find some comfort in the fact they can empathize with you Welcome to the forum

Debbie, wow! Two cancer battles on top of all of your IBD events? You must be an incredibly tough person and all that turmoil you've been through probably has helped you be a pretty darned good counselor. I hope the the new medicine does the trick for you! Welcome to our little slice of heaven and :hang:

Thanks everyone!

Hi There and Welcome.

God what a nightmare you have, certainly been through it. With regards to your toilet trips through the night, maybe mention to your doc/Gi about Amitriptyline, or look up on net. Basically I take this to relax me at night and is meant to stop lots of bowel movements through the night. A lot of stuff you read states it is an anit-depressant (which it is) but it is also used for Crohns. It may not work for you but might be worth mentioning.

Hope you get some answers next week.

Jo xx