Welcome girlygirl

[girlygirl]

Hello I have recently been diagnosed with IBD this month. Originally I noticed a lump in Feb 2010. Was seen by my GP and was told was a swollen lymph node. Was placed on Cipro and flagyl. The lump went down, only to return again late March. Was on and off antibiotics this year keeping the mass from getting too large. Noticed the mass had grown to possibly the size of a small lime in July. The mass ruptured internally sending me to the ER. Was put on levaquin, which made my body achy. Was referred to a specialist with a dx of perirectal abscess. Met with the specialist and was put on sulfasalazine 4x's/dy, bloodwork taken, and advised I needed surgery. The next week was told my labs came back as consistent with IBD, however the surgeon would go over additional findings later.

Had surgery on Aug 24th. At that time my surgeon advised that additional lab findings arrived and I had Crohns disease. The surgeon removed a mass and fistula and sent for biopsy. The biopsy resulsts came back ok. So no cancer, and no confirmation from the tissue sent of Crohns. Just had a followup visit. The surgeon says that I do have IBD, however not sure which one(CD or UC). I'm currently taking the sulfasalizine and cipro, and metrodonizole. Also, have had the aphthous ulcers off and on, last year had months of not being able to eat. Just couldn't keep much down. Was put on different meds for ulcers at that time. Currently I do not have the IBD that makes you "go" all the time, but the other.. I do occasionally get fatigued, although I'm not sure if it is disease related.

I internally blame myself for that - as not being driven enough at times. But really I just get tired/fatigued. I'm happy to know that there is some light at the end of the tunnel, and that I wasn't just getting sick from stress.. That there is actually something going on inside my body I could not help. Still I am only barely learning about IBD. I've never heard of this before. I'm unsure of what all will happen, and find myself feeling alone at times. Its comforting to know I'm not the only one. My problems aren't as bad as others.. And my heart goes out to you.

 

[gypsigirl28]

hi girlygirl, WELCOME ....
you sure have been through alot lately but at least you now know what is wrong with you and you can start getting yourself on the rode to feeling better..

I hope you stick around, you will find alot of nice, supportive people here. Everyone on this forum is great.

Take care and get some rest

hugs to you!!!

 

[girlygirl]

Thank you Rosemary! This forum is a breath of fresh air. Everyone is so nice and knowledgeable! I'm humbled to read so many stories of brave strong individuals who are fighting IBD. For me this was fast! Surgery almost immediately after an er visit. Thank you so much for welcoming me into the group! I look forward to hopefully being able to contribute myself.

 

[Dexky]

Hi GG, welcome!! Yes there is a tremendous amount of info and support on this forum. You'll definitely be able to contribute!! Isn't it nice to know that someone cared enough to read and comment on your post? We can all do that much!!! Even me!!

 

[DustyKat]

Hi girlygirl and :welcome:

I'm glad you found way here. Don't blame yourself for feeling tired and fatigued as this is something many people suffer from and it certainly is disease related and it certainly isn't laziness or not being driven! This is a safe and friendly place with loads of experience and knowledge and I have no doubt that you have more than enough to share with us. I look forward to seeing you around.

Welcome aboard!

Take care,
Dusty

 

[Astra]

Hi GG
and welcome

Yes fatigue is a killer alright!
Once you get familiar with IBD and how it works, you will find that everything makes sense!
Our immune system initiates inflammation then sends out a response to fight it at the same time, so it's working overtime - result - fatigue!
Stress is defo a contributing factor, so listen to your body, rest as much as you can, crucial for healing, you're not lazy, you're ill hun!
Good luck with your meds, metronidazole is horrible, have you got a metallic taste in your mouth? Chew some chewing gum.
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Brindle]

Hey Girlygirl,

IBD is crazy in that it can take on so many different faces. Different symptoms for some, all the same for others. This is a great resource and you will find much solace here. I know I have. Welcome to the forum.

 

[Jennjenn]

Welcome

 

[girlygirl]

Hi Dexky,

Hi GG, welcome!! Yes there is a tremendous amount of info and support on this forum. You'll definitely be able to contribute!! Isn't it nice to know that someone cared enough to read and comment on your post? We can all do that much!!! Even me!!

Hi Dexky,
thank you for the warm welcome! And it does feel so good to receive replys to posts!This is a whole new experience for me and I'm so glad to have you to share this with!

As well as the posts from Dusty, Joan,Astra101,JennJenn, and Brindle! Thank you all so so much!!!

Joan I'm not sure if the metrodonizole has given me the metalic taste. I'm taking so many different meds right now, and for some odd reason I just want to eat all the time. I have a really bad habbit of chewing gum. I always go for the fruity gum its pleasant to the taste buds. But guess what? Yesterday was my 1st day back at work from the surgery leave. Went home, and cracked a tooth chomping on gum.. Had to go to the dentist.. That wasn't fun. But I already had a root canal done a few months ago.. My fault for not getting the crown soon, but had the whole lump problem at the same time. So, looking forward to getting a crown soon. Has anyone had any dental problems ? I had an abscessed tooth, which turned into a bone infection recently.

Anyways, I'm rambling.. My appologies for the long post!! Just have so much to say.

Had a follow-up visit with the surgeon today. My stitches are healing well. And the doc told me that I may just need to take the sulfasalazine 4x's/day for 1 year. Well assuming I don't have any more abscesses sneak up. And have to wait 6mos for the colonoscopy. Seems like ages! And they aren't going to do the upper scope until after the colonoscopy. I know I have problems in there..

I have so much compassion for all of you! This disease takes patience for sure!!!

I feel like I'm getting chunky now.. Anyone have that problem? I want to workout but not sure how long is good enough to wait following surgery.

(Big Hugs) to all!
Lots of Love
Girly Girl

 

[DustyKat]

Hey Girly,

Thanks for the update. Sorry to hear about the tooth, ouch! Here is a link to a thread about tooth problems and crohns...............................

http://www.crohnsforum.com/showthread.php?t=10081&highlight=teeth

Good to know that you healing well after your op.

Take care,
Dusty

 

[VintageAnn]

Welcome girlygirl,

I am glad you are feeling better and receiving the care you need. Whne the IBD causes fatigue listen to your body and rest. You will thank yourself. A lot of the meds used for IBD can be very hard on your teeth. I took 6-MP for a few years and it caused all of my dental work to fail so I ended up having to have dentures at the tender age of 39.

It was hard at first but now it's no big deal. A couple of years ago I went to this dentist that specializes in making dentures the guy is an artist. He made me a new set of dentures that give me a really nice smile. I take all this stuff in stride and try not to let it get to me.

It is what it is. And here you can find some of the kindest and most compassionate people around (HUG) nice to meet you.

 

[girlygirl]

Welcome girlygirl,

I am glad you are feeling better and receiving the care you need. Whne the IBD causes fatigue listen to your body and rest. You will thank yourself. A lot of the meds used for IBD can be very hard on your teeth. I took 6-MP for a few years and it caused all of my dental work to fail so I ended up having to have dentures at the tender age of 39.

It was hard at first but now it's no big deal. A couple of years ago I went to this dentist that specializes in making dentures the guy is an artist. He made me a new set of dentures that give me a really nice smile. I take all this stuff in stride and try not to let it get to me.

It is what it is. And here you can find some of the kindest and most compassionate people around (HUG) nice to meet you.

Thank you VintageAnn! I'm very happy to be here! And it is nice to meet you as well!

I'm so sorry you've had to go through so much! And especially the dental work! My heart goes out to you. I plan on sticking around for a very long time.. I have a feeling this is only the beginning for me since already having had surgery and just diagnosed. But you're absolutely right!! It is what it is.. and I'm so thankful to not have cancer!

GirlyGirl

 

[girlygirl]

[URL="http://www.crohnsforum.com/showthread.php?t=10081&highlight=teeth"]http://www.c

Hey Girly,

Thanks for the update. Sorry to hear about the tooth, ouch! Here is a link to a thread about tooth problems and crohns...............................



Good to know that you healing well after your op.

Take care,
Dusty

Hi DustyKat,

Thank you so much for the info..! I've already began to read through the postings, and it is for sure very informative! :thumleft:

You know I seem to be learning more and more everyday about this disease, and the complications seem endless.. well I do understand they vary from person to person.. but this site has so much information to offer! And so many wonderful people! I'm so so super happy to have found my way here.

Thanks again!
GirlyGirl

 

[duck68]

Welcome GirlyGirl...I hope everything is going ok for you...this is a wonderful forum for us all...I have learnt so much about Crohn's and the different ways it affects everyone...we are all so different but suffering from the same disease - weird, hey!

Anyway, take care...

 

[girlygirl]

Welcome GirlyGirl...I hope everything is going ok for you...this is a wonderful forum for us all...I have learnt so much about Crohn's and the different ways it affects everyone...we are all so different but suffering from the same disease - weird, hey!

Anyway, take care...

Thank you for the warm welcome! I'm definately learning more and more every day! Yes, it is weird.. :sun: .. but I am surprised to find so many things that IBD, CD, and UC affects! It's awesome to be able to share what we are going through as well. Since I've been recently diagnosed I'm still learning, and this site helps me understand better of what's going on. And it feels good to know you're not alone! Thanks again for the welcome! And I hope all is going good for you as well!

 

[girlygirl]

Well here's an update..
Was reading thru my original post and have to laugh @ myself.. Oh goodness.. I've been stricken w the dreadful "D" for a while now. So, went from the C to the D.. And will prob go back again.
Finally finished the 30days of the cipro/flagyl today (yay!).. But have more to replace those.. Seems like its neverending.

My CR Surgeon said my incision looks good. He doesn't know why I've had the D problem for so long. Told me to eat block cheddar cheese. Then I reminded him that I just had a yeast infection. Anywho, he put something up my arse today.. I really DONOT like anything going in there. OMG it hurt like a #@?@!!! He took out some stitches the rest he said would eventually work away on its own. He said the fatigue is normal. Oh, and I have the weird tongue thing.. Think its thrush coming on again.. So get to take more Nystatin, also starting Xifaxan. And a few samples of probiotic (florastor.) So, 2 RX's down today, bt 2 other pills.. Argh..
But he did say we could do the colonoscopy before the end of the year so my deductible will already be paid for. He won't do it soon though. Said my body needs to recover from what's going on now before we move on. And he doesn't want me to do the upper gi until the colonoscopy is done. Ah, and the highlight of my day.. I get to give my first poo sample to a lab so they can run tests on that. Oh the joy of CD, its the gift that keeps on giving. And I've also been back on the Phenergan for a few days.. Helps with the nausea, and for some reason seems has helped with the D today. Maybe it stops you up. Idk. Oh almost forgot, have another aptholic ulcer on the side of my tongue. So fitting the triamcinolone paste back in.

Ah and have been thinking about food all day. Went wild after my apt, had McDonalds quarter pounder w cheese no onions, fries, diet coke, Fpiece chicken nuget, and a m&m mcflurry. My stomaches been a little pissy about it.. But I just had to . Lol.. After the thing up the bum.. Just had to. Do you suppose they ever have to deal with that? That's really quite painfull! Guess I just got use to them poking @ the wound.. And forgot about the invasive bologne! Yowzers!!

 

[DustyKat]

Thanks for the update Girly!

Ouch, ouch, ouch!!! no wonder you splashed out afterwards!!!

Is the diarrhoea related to being on the antibiotics or do you have it when you aren't on them?

Dusty.

 

[gypsigirl28]

thanks for update... Sounds like it was not a fun visit. I think I would have went and ate like that to just to forget about the apointment. lol Hope things calm down for you.

 

[Dexky]

Hey M, thanks for the update!! Glad you are still about it all!!

Where did you get the term "aptholic ulcer"?? I just googled it and it only links to genital ulcers!!! Sorry to question ya on it, but EJ had tongue issues a couple months back so I'm hyper-sensitive to it I guess!!

 

[Crohn's 35]

Hey Girlygirl so sorry about the butt thing..damn near takes your breath away, ouch! The ulcers in the mouth are from the Flagyl, I just got back on it and the next day boom...got one.

Xanifax (sp) and high probiotics is the new combo that is suppose to really help. WE can't get that here in Canada,because I would be on it in a heartbeat. I use VSL and it is very expensive. But what you are taking is fine. :hang:

 

[girlygirl]

Thanks Everyone!

@Dusty - I usually have more of the C than D. But, I've gotten it before off & on, use to think that was normal. I think the doc is checking the sample to see if the D is related to the medication I've been on. :shifty-t:

@Gypsy - he he.. yea.. :ylol:I had to! couldn't resist.. those visits seem traumatizing sometimes.. But it wasn't that bad. Just hurt like hell!! I do like my CR doc. He seems to be good.

@ Dexky - the ulcers i get are only in the mouth. I spelled it wrong.. it's aphthous ulcers oops.. lol.. the RX is Triamcinolone Dental Paste. It's a steroid by RX only (i think) ** I sure hope the paste helps Ej! It's worked for me. I've had some inside my mouth before that seemed to last months. And my Prim Care Physician only gave me RX's for lidocane mouth rinse. It only masks the problem and allows you to eat. I added a few places that mention the ulcers below
Wikipedia Online: http://en.wikipedia.org/wiki/Crohn's_disease - "At the opposite end of the GI tract, the mouth may be affected by non-healing sores (aphthous ulcers).
Everyday Health: http://www.everydayhealth.com/crohns-disease/specialists/mouth-ulcers.aspx - This one said the ulcers can occur anywhere in the digestive tract, and can occur in the mouth and is a common thing for Crohn's sufferes

@ Pen - Lady you are so super cool! - I've gotten them quite a bit over the past few yrs when I had Tummy problems. i was on Med's for stomach ulcers only. IDK.

The leaflet of the probiotic sample (florastor) from the doc, said it's a type of yeast. And not to take any antifungal med (which the nystatin is - for thrush) or the organisms die. Doesn't make sense to me.??

?? - Yesterday the doc was poking @ my tummy asking if it hurt.. yada yada.. it was a little sensitive @ the area above the bellybutton and sort of to the left.. not untolerable

Well, this morning i had pain @ my upper abdomen, just under the breast bone, in the middle, and another sort of to the left. nagging pain, sort of sharp. Kinda felt like it was a contracted muscle when i would move. achy.. For a minute I thought it was my heart because of where it was coming from, but i've never had heart problems before.

has anyone had anything similar? Thank you all so so much!!! :ghug:

 

[Dexky]

Thanks for clearing that up for me M!!! None of EJ's were ever as bad as the images Mr. Google has for aphthous ulcers...thank goodness!! Thanks for the links as well!!

I hope you get your pain sorted soon M!!

 

[girlygirl]

Thanks Dexky. Ya the images are quite graphic. Mine didn't look like that either. Mine were just the same as usual description of the ulcers on the tonge. And they did come when I would have digetive problems, that prob w a combo of stress.. IMO - they originated in muy stomach and eventually had me feeling sick enough that I would get them in my mouth @ tongue. I'm so sorry Ej has to deal with this or something similar! No fun at all..