UOAA Discussion Board

OMG Fiona & Button!!!!! (((((super hugs!!!))))) I've missed you both terribly!!!

I think that both Emily and Gwen are here in spirit and probably glad that our little merry band is back together!!

I just wanted to post that first before doing a bigger post with updates

Hi Gen:

Kudos to you for re-boosting the Fickle Sisterhood thread. It feels good to see the many of us together in conversation. I think that Emily and Gwen would approve.

I always have enjoyed the artistry of your hugs ((((((((((((( hug )))))))))))))))).

I was having difficulty with my eyes and vision that made it difficult for me to see text/writing on the computer. I shied away from time on the computer and visiting this site. Trial of a new medication has had good result in shrinking my pituitary tumor (that has been pressing on the optic nerve). Now my eyes are cooperating.

I look forward to reconnecting with everyone.

Cheers,
- Karen -

Karen, fantastic news that your eyes are cooperating!!!! I am so very glad that is so.
Gen, waiting for your bigger post with updates . . .
Hugs all round, TGH
ps anyone heard from To Dream a Dream?

Roll call to the Fickle Sisterhood.

Good news for me this week. MRI of my hips shows the avascular necrosis stable, bone loss stable. Stable is good ! I take this as a win !

No . . . I have not heard from To Dream a Dream. In hearing To Dream describe the early years with her ileostomy (unreliable ostomy products, fewer surgical options), I came to admire her courage. To Dream and Terry G were my early ostomy "heroes." Maybe To Dream will see this new thread and chime in?

A woman who owns a condominium in the complex where I reside has been diagnosed recently with bladder cancer and will be having surgery to remove her bladder + urostomy. We are in a book group together. I am saddened to see cancer affecting yet another person. As Emily would say, a sneaky, nasty disease.

How is everyone?

With care to one and all,
- Karen -

Great news on the mri results karen! I thougt i posted here last week about my recent battles but i guess i missed it. Anyway i was in the hospital for the last 2 weeks with heart issues. I had chest pains which sent me to the ER then when i got there i was found to be in Afib spent the better part of 2-3 days in and out of it. They could get it to break but would soon end up back in it again so they did an ablation last week. Was in there an additional week trying to get my blood pressure stabilized as it runs very low. They finally get it stable but then i am fluid overloaded because of kidney issues. They take 10 pounds of fluid off in 24 hours and now i am home on a small dose of lasix as needed when i feel i need it i take it.

Hi everyone!

I'm sorry I've been MIA... I started to write a long message responding to everyone and I somehow deleted it while I was typing I'm going to blame the fact that I'm still getting use to my iPad which the case is a bluetooth keyboard. It's so much lighter than any laptop I could find... I've been slowly replacing my tech and the learning curve is harder than I thought =/ So I'm uber bummed I lost that post... and I feel terrible that I've been not as active as I want to be.

So before I fill y'all in on what's been keeping me away, I want to (((((((((((GROUP HUGS!!!!!)))))))))))))

Whew! I'm going to give the clift notes version of what all has happened since before I started up this thread. I can't remember if I ever got around to saying that 3 days after my 33rd birthday I got diagnosed with an extremely rare soft tissue sarcoma that started in my lower abdominal wall and grew really quickly into this thing the size of a Chipotle burrito. So from Jan 2013 to August 2014 I started on oral chemo...then I changed oncologists and cancer centers and I was started on IV chemo...when the side effects landed me in the hospital for just over a week (It turns out it was my oncologist's fault for not following the medication guidelines...) the last IV chemo was a drug called Doxil... evil stuff (I ended up getting hand-foot syndrome which causes your hands and feet to turn bright red and swell because the drug is so caustic the tiny capillaries in the hands and feet end up breaking and the drug leaks out into the surrounding tissue and causing an internal chemical burn. Like other burns... it has grades of how bad it gets.... at the time of my last infusion I had grade 4 Hand-Foot... I couldn't use my hands because they were so swollen... I had man hands and because they were so swollen I couldn't bend my fingers to do simple things like put on clothes or eat normally... Abe, my amazingly awesome other half, helped me do just about everything... although I fought to feed myself... I came up with a technique Abe called my crab hands..Anyway... I ended up in the hospital when my body had a severe allergic reaction to the drug. So my doctor gave me some time to recover from that and then it was 6 weeks of radiation... it turned into 7 when I had to take almost a week off near the end because the beam hit part of my bowel and my bowel didn't like it at all... ugh! So I finished radiation... which was the only treatment I was actually able TO finish! I will say that about 4 months after I finished, I finally saw that the torture I put myself through actually worked! The downside was with the huge tumor shrunk, they found another tumor >.> thankfully it seemed to be acting like the primary... ie responding to the treatments... but they started to grow again and I ended up doing a clinical trial up in DC at the NIH... that turned out to be and absolute NITEMARE!!! >.> Lets just say the chemo did not agree with me at all and even worse was it didn't work >.> Right now I'm on a treatment break because my body is so messed up >.>

So the whole time I was having to deal with the scar tissue that formed around my stoma after my original surgery. I was using a dilator set I found on Amazon because the ones my surgeon found were WAAAAAAAY too big for my stoma. This past December I ended up having to have surgery because the scar tissue had choked off the opening for my poor Rosie which meant that I wasn't able to pass anything other than liquids. So she got a little nip & tuck... my new GI surgeon was able to remove the scar tissue, but he couldn't change the fact that she's flush/recessed... a true revision surgery would be uber dangerous and even if he moved her, he'd hve to remove a foot of bowel to get the right amount of blood supply (my messentary artery is apparently extremely short and not very surgeon friendly >.<) I've got to say that even though I'm still trying to find the best system for me.. I changed again from Hollister to Coloplast... I must admit that my skin is much happier and despite the frequent leaks... even if I have a blow out, my skin is less beat up than with previous stuff... So right now I'm about to try yet another type, but it's all good.. I'm happy to have a totally functional stoma that doesn't require torturing myself every other day >.> My dilators have been retired and I couldn't be happier!

Now last week I did a HUUUUUUGE no-no... which not just landed my unhappy ass in the ER... but I was in the hospital for a week >.> I broke a huge dietary rule... ie don't eat lots of uber fibery foods... as in I ate half a canister of the kosher for passover macarron cookies (the coconut cookies... literally I think they're just made of coconut!) So that was a really horrible lesson to learn from... I've had Rosie my ileostomy now for 4 years now and until now I'd been obstruction free... not any more >.> OMG I never EVER want to experience that again!!! Now I'm not sure if this contributed to the suck fest of abominal pain and suffering... but my Endocinologist tested me for Cushings because I have the fat hump between my shoulders and at the base of my neck which is suppose tobe a positive sign for Cushings... only instead of having too much Cortisol... I'm totally deficient...so I may have Addison's which has a bunch of symptoms that if I'm having an adrenal crisis it mimics a bowel obstruction.... yeah I'm pretty certain the few times I've landed in the hospital for bowel pain... I think it was my adrenal issues and not my GI track which makes things that much more complicated!

UGH!!! Sorry for this extremely long and extremely overdue post! I'm going to do my best to check in at least once week. One of the crappy side effects from my adrenal glands crapping out on me is the fact that I have even less energy than before!!!

Bleh!!! Despite it all... I'm enjoying my good days and even the bad days aren't that bad I'm really trying to live life to the fullest that I can

I love you guys

Thanks for the update you have certaintly been thru alot lately. I am again in the hospital, was discharged last thursday and came back in yesterday. This time i am in for severe dehydration and acute kidney failure. The kidney is back working again but not where it should be despite 6 liter's of fluids. The doc said that once i am hydrated again and my numbers are better they can then get a better idea of how bad the failure is. But they are hoping that once i am hydrated. My numbers will be better. They think this is all dehydration that caused it as i have stopped getting sick since the fluids. Still am very weak but i feel a bit better.

Gen:
Wow ! And double Wow-za ! Reading your post had my head spinning.

I hope that your health challenges are easing. I hold an image of a smooth/level Arizona plateau.

Welcome to a small corner of my world. I, too, have Addison's disease. It is a relatively rare endocrine disorder with broad effects on the body, as cortisol is life essential.

Treatment of Addison's involves the replacement of glucocorticosteroids and aldosterone.

Beware: It is not as simple as "take X mg tablets 2 times a day." Be prepared for a significant, and on-going, learning curve. I am still learning and adapting/adjusting. There is a resourceful on-line forum that I frequent if you are interested. It is a very small group of participants (as Addison's is rare), but the members are knowledgeable and caring. I have learned more from the Addison's forum than from any MD or clinician.

Know that I am here for you . . . to answer questions, to share experiences, to extend support.


Smashms:
Sorry to hear that you are in the "Big House." Sending you healing wishes in the days ahead.

Cheers,
- Karen -

Yeah thanks karen i am back in yet again going to be here for awhile too as i seem to have lost function of my entire left side. Having a MRI at somepoint tonight. I am looking at another inpatient rehab stay i think. But we will see. Both my left leg and atm feel like a ton of bricks and i have no feeling in either one again.

Smashms:
How frightening this must be for you . . . .

Are you coping OK for the time being? How can the Fickle Sisters be of aide to you?

Did the recent atrial fibrillation possibly cause a stroke?

I hope that the MRI sheds some light/answers.

Gentle prayers heading your direction,
- Karen -

Gen, thanks for bringing us up to date with your cliff notes version. I totally empathize with you typing out a long post and then : wosh! it disappears - so frustrating. The hand-foot syndrome sounds dreadful and on top of that, the treatment didn't work. I pray that after this 'break', the right treatment can be found.
So many things that you have to contend with at once. Now possibly Addisons as well. I never knew a bowel obstruction and an Addisons crisis could have similar symptoms. Yes coconut is pretty much a no-no for me as well as corn, mushrooms, pineapple. Fibrous foods don't get along with my adhesions and hernias. Good luck with finding an appliance system that works and doesn't leak. It's a plus that your skin is doing better.

smashms, you are going through the wringer too. I hope you get the best care in the hospital and that you quickly get the very best treatment.

Button, it is SO GREAT to have you back posting and cheering us along. You have so much knowledge and hardwon experience too.

I want to share some good news. I've had rectal bleeding for several months. Had flexible sigmoidoscopy today and yippee! no sign of recurring rectal cancer. I have "diffuse radiation proctitis" which is do-able. If you're wondering why I waited so long: I told my primary physician in Feb. but I didn't remind him that I'd had rectal cancer until last week. Then things moved quickly!

Hugs to all
(((((((((((((((((((((((((((((((((((((((((((((((((((((( FNSD Sisterhood))))))))))))))))))))))))))))))))))))))))))
TGH

Thanks everyone the MRI didn't show anything new so this is most likely ms excerbation. This is the best news because it means hopefully i will get all function back or at least most of it. Right now is the most frusterating because i am just laying here in bed doing nothing not able to move by myself. And thinking of everything that i should be doing and used to do. Hell i am supposed to be at a wedding shower on sunday taking pictures for my best friend. And next week at my baby cousins birthday party in ct. Both of which i will now miss. Sorry for the rant just feeling sorry for myself. And it really gets bad when the food trays come and i am not able to open or butter a simple corn muffin.

Hi smashms - glad to hear that the mri didn't show anything new. Hopefully you will get 99% of function back on your left side. How disappointing to miss the wedding shower and baby birthday party. Frustrating when you cannot 'feed' yourself. I hope there is always someone there willing and able to help. All the best for your progress, TGH

Smashms: I am so sorry to read that you are facing an exacerbation of MS. Hopefully, your MDs will place you on high-dose steroids or an auto-immune suppressant to quiet the flare. I hope that you begin to see glimmers of muscle recovery day-to-day.

Your Fickle Sisters are here for you.

To Good Health: You are ever gracious in giving of support and kindness to others.

I think that I read in another post (General Section) that you had a sigmoidoscopy the other day. I hope that all went well with the procedure. Were you spared having to take a bowel prep?

Gen: Sending you healing energy.

Today I visited a local tulip farm with my family. Although it is nearing the end of the tulip blossom season, it was a beautiful site to behold. Row upon row of tulips. A rainbow of colors.

Thinking of all of you,
- Karen -

Started iv steroids tonight which means i should be moving to rehab by weeks end. Walked with pt today almost to my room's doorway before my leg completely gave out was in total about 20 steps maybe. Took alot out of me as well. They are doing a much lower dose of steroids this time as well it is only 250 mg iv push instead of the 1gram hour long infusion. Not sure why will have to ask the attending tomorrow when i see him. Not complaining because i hate them but i am not sure why they would do a much lower dose than normal.