New to site, but not to CD

[Silvermoon]

New to site, but not to CD (aka Silver's Story)

Hi all... thought I would introduce myself, and give a bit of my story so far.

I was diagnosed in the mid 80's at the age of 11 (haha, kinda gives you an idea of how old I am now... lol), but like many of you, I suffered with the symptoms for years before a diagnosis was actually made, although most of that was my fault, as I was brought up in a family where we never complained about our aches and pains, so it wasn't until I lost a large amount of weight in a short amount of time that my parnets finally decided something was wrong......

But anyway, to date, I have tried almost all the meds (Salazopyrin, Pentasa, Mesacal, prednisone (yippy!) methotrexate, imuran, Remicade, (ummm how many did I miss.... ?:confused2: ) and am currently using Humira and Imuran. I have had three resections, and was actually prepared for a colostomy on the last one ten years ago, just after I got married, but the surgeon decided otherwise while he was messin' around in there, and I have spent the last 10 years in diapers for those days when sitting next to the toilet isn't close enough!! LOL

The last 7 or 8 years I have been dealing with these sores in my pubic/perianal area (which I SAID were fistulas, but no one else seemed to think so), and the doctors have all finally got their poop together (HAHA I said poop!!) and agreed that, OK, maybe I am right, and I do have NUMEROUS microfistulas that no amount of antibiotics or any other meds seem to be able to work on. So in the very near future, I will be getting my ostomy! (You know you are at the right site when you can tell people you are going to have a poop bag attached to the OUTSIDE of your body, and they are happy for you! lol)

But yes, there are still lots of questions in my mind, and a few scary thoughts (I am a nurse as well, btw, so I have had patients with them, but I mostly work in public health/community health in remote areas, so I haven't seen TOO many, jsut what I have researched on the 'net). But overall, I AM looking forward to it, as not only do I work out in the community a lot, but my husband and I like to be outdoors lots, putting downs trails and cutlines on the quad, out paddling down the river in the canoe, camping, fishing, and farming).

So anyway, that's a bit about me for now. Just thought I would give a bit of a story before I got too far into reading more of the forums and making posts.

Hope to see you around!!

 

[kello82]

HAH i LOL'd when you said "HAHA i said poop!"

i feel like we have really similar stories, except you have been thru many more surgeries, yikes, the ileo was my one and only.
but i was dx at 9, around the same age. tried all the meds. have lots of butt area problems, complete urgency....allll the same.
finally i was like "ok what is cooler, crapping my pants all the time or an ostomy..."
and hahah i finally felt ok with that decision to agree to the ileo.

you sound like youre excited and ready for it? thats good!

somone else, Jeff D. will be getting an ileo in like a month or so i think. i think hes got a thread somewhere round here.....http://www.crohnsforum.com/showthread.php?t=10017

lots of questions and answers in there

just so you know, my butt was a total wreck when i had the surgery, and it has healed up really well no more sores or anything, i still have the tracts left from my 2 biggest fistulas but theyre not...active? anymore. they dont drain pus and hurt or anything, theres just extra holes in my butt lol.

 

[Entchen]

Welcome! If you're a nurse, then no wonder you can say po....p...po... you know, THAT.

 

[Nyx]

Welcome!! I just had a colostomy this past December and can totally relate to being ready for it! It was the best thing that's ever happened to me....

Any questions/concerns, feel free to ask...there are a few of us on here with experience

 

[CDDad]

Hi Silvermoon,
I have a new ostomy (4 weeks) and I'm still in the "getting to know it" phase. I look forward to reading more about your upcoming surgery. And good luck!

 

[Astra]

Hi Silvermoon
and welcome

I haven't had any Crohns surgery, but lots of people on here to help you with that.
Love your sense of humour and positivity, that's what we all need to hear!
glad you found us, and see you around
lotsa luv
Joan xxx

 

[Silvermoon]

Well Thank You all so much for your warm welcome!

I try to have a sense of humor... I cried for the first ten years of this dumb disease, and got dehydrated, so I try not to do that now. Works most of the time! LOL!

And yes, I go for my consult on June 1, so I will update you on the plan as I know more about it! All the docs have mentioned "colostomy", but I am not real sure we will know the exact plan until I see the surgeon on the 1st. I'll keep you posted!

 

[Dexky]

Hi Silvermoon, my ten yr old has a recent crohn's dx. I hate to pose a question to you but I'm curious since you were similar age how it affected your growth and maturation. He has not grown noticably in the last seven months. I hope he can maintain an attitude like yours.

 

[Silvermoon]

Hey Dexky!

First of all, please do not ever feel bad to ask me a question! ANY of you out there... if my advise can help anyone, either my experience as a patient or my knowledge as a nurse, I would love to help you if I can!

OK, on to being diagnosed young: as a bit of a side note, my one and only brother (2 years younger than me) was diagnosed about 18 months after I was, so we were both very young... pre-pubescent, if you will.

Your question is not an easy one to answer, but I will do my best (anyone with this kind of experience, PLEASE feel free to add your comments!!) Due to the fact that CD affects the absorption of vitamins and minerals into your body, there are definitely effects on growth and development, so supplements are pretty important. One thing I remember as a child was that, because they were hard to digest, we found reasons not to eat veggies (like kids NEED reasons not to eat veggies!! LOL ). As an adult, I have actually fouund that the fiber and roughage from veggies tends to HELP regulate bowel movements and such, so you learn they are a good thing.

Both my brother and I were delayed in puberty... stress to the body to mature at a normal rate I would imagine. CD patients find they often have joint and muscle aches and pains, so when growth spurts DO hit, it can be a bit more uncomfortable. I don't remember having too much of a problem with this myself, but I do remember my brother did... once he came off the prednisone the first time, a growth spurt hit and he grew like 8 inches in 3 months! So, yeah, he kinda ached for a bit... . The good news is, physically, we did catch up eventually. I am 5 feet 6 inches (about normal for my family), and my brother is close to 6 feet. Neither of us seems to have suffered and kind of growth retardation in those aspects.

As for maturity, are we talking physical maturity, or mental maturity? Mental maturity is a really tough one to answer. Picture yourself at age 10 - 12, and what kind of "peer pressures" and such we had to deal with at that time. Then picture yourself as an adult and being diagnosed with a chronic illness you will have for the rest of your life. Now put them together. lol. I am going to leave it at that for now, but if you would like me to discuss more on the "mental maturity" aspects of being diagnosed that young, I'd be happy to elaborate!

I hope this helps a bit. If I have missed something you particularly needed an answer for, or think of other things, just let me know!!

Silver

 

[dreamintwilight]

Welcome Silvermoon! You've come to the right place as there are many people who have had colostomies on here.

I have not had this done (or any surgery YET!), but wish you the best of luck. IT's good that you are a nurse. You probably a better understanding of infections and keeping wounds clean and all that good stuff. For everything else there's lots of info on here and people to support you through it.

 

[Silvermoon]

Thanks, Dreamintwilight!

Being a nurse I have done a lot of research into the medical aspect of this disease, and, of course all the research does talk about feelings and emotions patients will go through, but until you actually read stories from real people, you don't really feel "normal"! All these other things I have been going through, and I read through these forums and think "OMG! All these other people are going through all the same things I am!" You know you can't be the only one, but it doesn't really hit home until you see it.

I just wish I would have thought about searching out forums sooner! lol

 

[Entchen]

Hi Silvermoon:

I agree re. the knowledge of not being alone hitting home when you start hearing others' stories. Things started to become normalized after I joined CF. I had not suspected anything as serious as Crohn's, so hearing others' experiences and learning from CF members has helped with starting to adjust to the fact that one round of antibiotics isn't going to cure everything.

On another topic, my mother and I were chatting this evening about the difference in our experience of me having these symptoms. Like you, she's a nurse, and when she worked in the hospitals she saw the guts and gore every day. So now, hearing about it doesn't bother her at all (although I like my privacy and really pick and choose what I share, lol). On the other hand, I'm not a nurse, and when I see mucus and blood I want to freak out. Every time. I don't know if I'll ever get used to it (and I'd rather not have to find out!).

And last, thanks for joining CF, because it sounds like you have a huge knowledge base that you're working from, like many of the others on this site. It's very kind of you to offer to answer questions.

 

[Hedgehog]

Welcome Silvermoon,
Good to have someone with lots of experience and knowledge and a willingness to share. I'm new to Crohn's so really value the info and support on the site.

Also good to know Crohn's hasn't stopped you doing anything - paddling down the river in a canoe!!

Gail

 

[Silvermoon]

Thanks, guys! I'll offer all the help I can, and in return hope to gain a bit of "mental" support...lol

I try to be as positive and upbeat as I can, but somedays, it's just too tiring to even try, eh? (like the Canuck-ism I had to throw in there - "eh"? LMAO).

Had kind of a downer few days... could be the weather, could be PMS, with this "crappy" disease it could be anything... who knows! But reading through some of the forums and seeing that we are all in the same boat sure helps. Thank you so much to ALL the staff and members who are so willing to share what goes on in their lives.

I'll try to keep up, but between work and Crohn's, some days I may fall behind, so just bear with me... lol :redface:

(PS. One more week until consult with the surgeon... hurry up, week!!)

 

[Silvermoon]

Well, only 6 more days until I see the surgeon. Reading some of your guys' stories (like Jeff and so on) has definitely reassured me that my decision has been the right one... now just waiting to see WHEN it can happen... only 6 more days....

*Silver starts to fidget...*

It's weird, though. Maybe I am a bit stressed over it and not really aware, or maybe just the anxiousness, but I kinda feel like some symptoms are getting worse as the day draws closer (kinda like when you are travelling: the closer you get to your next rest stop, the more you have to pee... lol). But like today, had to come home from work early, 'cause I went to the bathroom just after lunch and there was lots of red blood in my stool... haven't had that happen in a while, and it kinda freaked me out a bit and made me all depressed. (I get a little panicky now whenever I see blood in my stool... last two times it happened seriously, I kind of ignored it, it got worse, and I ended up being flown to hospital after passing out ). So I came home to just try and relax a bit and not stress my colon too much. the bleeding seems to have stopped, but has left me a bit down in the mood.

And of course, there is still the unknown... what if I have this surgery and I still have sores all over the place? I could be having surgery for nothing. Well not really for nothing, per se... would still make quality of life a bit better as I wouldn't have to worry about where the toilets are when I go out in public... but still.... Surgery is never a cure, and has it's own complications in patients like us....so what if....?

lol Bah! Gotta snap out of the grumpys... so I think I am going to go find some comfort food and chillax in front of the TV a bit. Thanks for listening, guys, and sharing your lives and stories with the rest of us. Makes it all just a bit more tolerable at the end of the day.... :redface:

 

[Silvermoon]

OK, so I had my consult with the surgeon the first of June. He wants me to see a gyne (apparently I have an endometrioma on my uterous, and a couple of ovarian cysts) and then he wants to do an "exploratory" exam before he actually books surgery.

So tomorrow I am off to see the gyne. yay. Still waiting to hear about the exploratory thing. I guess what he is going to do there is probe one of the sores below my waist and see if the probe comes out in the intestine. Sounds simple enough I guess. Thank goodness for anesthetics!!

In the mean time, I am feeling worse and worse. I had quit taking Imuran for a bit cause I thought it was messing with my eyes. My vision is all blurry and one eyeball is actually all red and a little swollen (anyone else get anything like this?). Then, about 4 weeks ago, I started having problems with major diarrhea... like pretty much straight water coming out, and no control over it whatsoever. I asked my family doctor if he thought some of my problems might be Accutane (one dermatologist wanted me to try it to see if it would help with some of the sores). He said "no way", yet I stopped taking it anyway, and whattayaknow? The diarrhea cleared up!

So at the moment, I am back on the Imuran, off Accutane, on doxycycline and still taking Humira. And getting so very sick and tired of being so sick and tired (aren't we all!?!?) The surgeon is now on holidays for three weeks, so it's gonna be at least the end of July before I can get the exploratory done. And in the mean time, I am so miserable and bitchy I am sure my hubby is working out in the yard so much just to get the hell away from me! LOL! Oh well, at least the yard looks awesome!

I am still trying to be positive, carry on working as much as I can and trying to continue with my on-line University courses, but like Jerman, some days I just want to pack it all in and say "the hell with it!", ya know?

I am reading through the posts on the forums, catchin up a bit on some of the older ones now (more like procrastinating from doing my paper! HA!! :redface: ), and reading the posts of support you guys have made to others on here going through tough times. Some of you have been through more crap than I can even begin to imagine... kinda feel like a bit of a wuss when I think about my own issues...lol. But, anyway, even though the support is not directed towards me specifically, I read what some of you guys have been through, and the support offered by others, and it helps lift my spirits a bit. It helps me think... "Hey, if they can make it through this mess, so can I!".

So I just wanted to say thanks to you... you guys have given me more support and/or peace of mind than you can ever know or imagine. I just hope in some way, any advise or support I have given to anyone else has helped even half as much.

HUGS to you all.

 

[Dexky]

Hey Silver, you know I have no experience from a physical standpoint but you helped me a great deal emotionally with your advice about EJ. I wish there was more I could do other than say hang in there and know that I care. If it helps you to rant on here or in private, I'll be there for you. Thanks for your help Silver. Hope in some small way I can help you. Just let me know.

 

[Astra]

Hiya Silver

Aw, sorry you're feeling blue at the mo, also glad you're seeing the gynae tho, gotta get that looked at. Think everyone knows now my feelings about the importance of seeing a gynae and nippin it in the bud, so to speak! hope that works out for you, any advice, I'm here for you, PM me, I've also stuck some links up about endos and crohns related thingymebobs!
About the eyeball thang, yeah, all the time, I can wake up bloodshot and sore and itchy.
good luck and let us know how you get on
lotsa luv
Joan xxx

 

[Crohn's 35]

Silver you are a wonderful asset to the forum, and I have enjoyed reading your posts. We have our crabby days..:crab:

I am feeling ok for now but who knows... one minute I could be fine and the next, could be whole new ballgame. I try to cope when I can, and my husband goes in the garage on my crabby days, just best to stay away from me on my crabby days. Then when I feel good I go, go go. Not a lifestyle no one wants but we do what we have to when we have to.

Venting and pity parties are allow, no one understands like the rest of us. We all get sick and tired of being sick and tired. Don't worry your relief is coming soon, :hang:

We are family here and we are not going away. :ghug:

 

[donna martinez]

Silver, You are a very strong and inspiring to me. Any little symptom i get i run to the hospital. I hope and pray that you will get relief soon.

 

[Silvermoon]

Thank you so much Mark, Joan, Pen and Donna :blush: I know it will get better... just hard to "suck it up" sometimes, eh? lol

Joan, I have read quite a few of your posts on endo and such... found it very interesting, so I am curious what all the gyne is going to say...I may have a ton of questions for you later! LOL!

OK, time to put on my "big girl panties and deal with it!" I'll keep you guys posted!

 

[Silvermoon]

Update

So it looks like I go for surgery August 17, although I am not REAL clear on what surgery I am going for...I will find that out on August 6 at the pre-admission clinic....

One thing I know they ARE going to do is a tubal ligation and oophorectomy... remove one of my ovaries...as THAT is the spot that has the mass on it...so they are just gonna take that sucker out....

It's funny...the ligation decision I made on my own, but once they said they were going to remove an ovary, I got kinda teary...like it is no longer in my hands...lol. But with removing only one, I should be able to stay off the hormones, so I guess we will see how it all goes.....

So now I just gotta make it to the 17th....one day at a time.....

Hope the rest of you either hanging in or doing well.....

hugs

 

[DustyKat]

Hi Silver, :bigwave:

:hang: buddy. I so wish I could be there to give you a big squishy hug! but since I can't I will be here for you whenever you need. I know I've said it before but you are an incredible lady Silver and we are blessed to have you. I understand what you mean about things being out of your hands, sort of makes it final and leaves you feeling a bit vulnerable.

Sending MEGA HUGS your way................

:hug::ghug::hug::ghug::hug::ghug::hug:

We are all here for you Silver.

Thinking about you always,
Dusty

 

[Astra]

Hiya Silver

hope you're ok? bit of a shock hey? glad it's only one ovary tho. I had it all removed, but no regrets there!
I'm here for you, any questions just PM me, I know you're a nurse, don't wanna teach grandma to suck eggs!! lol
love lots
xxxx

 

[Crohns08]

Aww Silver, that's a bummer about the surgery! At least you get to keep one though so you can hopefully stay off the hormones! Good luck to you and I hope postop goes well!

 

[Silvermoon]

Awww thanks guys.... :redface:

Yes, I am OK with it...just like Joan said, bit of a shocker at first.... but it will all go well.... and if it doesn't, well I will use the other ovary to smack the surgeon upside the head....

You guys are the best....:ghug:

 

[gypsigirl28]

Silver you are funny to say the least.. that was a cute statement. I am praying for you that all goes well.
I to have had a complete hysterectomy with no regrets at all. Mine was due to endometreosis. I have not been on hormones for 6 years now.
lots of hugs to you

 

[Dexky]

Hey Silver, sorry you are going through so much. I wouldn't know ligation from litigation but I know you are one special lady and I wish you the best my friend. Take care of you first!! We all need you back 100% or whatever % they leave you. All the best Silver!!!

 

[Dallies]

Sending you a big squeezy hug >>>>>>>>>>>>>>>>>>>>>>>>>>>>> ((((((((((((((((silvermoon))))))))))))))))))) :shifty-t: Hope I've not squashed you xxxxxxxxx

 

[silver]

Hey hope all goes well with the op Silver! Sending you many :hug: we'll see you the other side when you're fine and dandy

I'll be thinking of you