My mom ... Havnt been here for awhile

[cutecats2]

Hi
well my mom is in for yet another problem . she had intestinal involvement is there anyone else that has? anyway now there is a fast growing tumor . turns out that she has a symbiotic twin and those cells are building along with leasions from wegners . either way she has a colostomy bag and notthing it coming otu of that the tumor attatched to what is left of her bowels and linked it to her cervix that is left from the last surgery and never guess what is coming out of her cervix . its soo hard .. but now they actually have her on morphine . she never said anything abotu pain and will never tell you she is because she will end up back at the hospital i am assuming .. she is tired and i cant blame her .
either way i have a question how many out there with this have A positive blood . just curious ..
also .. please watch the abdomine area and also .. no matter who you have for a doctor .. always tell them everything that is going on . .. always !!!!
thanks for listening and I know i will loose mom soon . but at least she can be compfortable ...
take care all of you and treasure all you have around you .
Diane

[elephant]

I'm so sorry to hear that Diane, my heart goes out to you and your mom. You absolety right....I had abdominal pain for years, finally the gyne did a lap and found out I had endometriosis and precancerous cells...so I had a total hysterectomy. So glad I did. Please keep us updated. I heard the intestines can be involved, but very rare.

[cutecats2]

Thanks hun .. so far so good she seems to be well getting checked out so with luck she will be with us for a while longer .
I hope soo ... i miss her definately miss her ..
i am abotu 3 hours away right now . and well if it wasnt for my brother i would be going crazy .
he is keeping me informed while my son finishes school .
ill keep posting ..
as i said she is at least on pain meds .
and compfortable

[Sangye]

I hope your mom continues to get better, Diane. Wegs can affect any part of the body. You sure gave us a good reminder of that.

[cutecats2]

Thanks all .. its hard to find support out there for families and the patients .. so I am here if anyone wants to just chat you are more than welcome to emailll just ask . I hoep all of you are well ... but please pay attention to even the little things ..
Hugs to all !!!
Diane

[Col 23]

Hi cutecats2
Im A positive, it is actually quite a common blood group.
Sorry to hear about your mum, its hard watching someone in so much pain and to watch the deterioration. She is a very lucky lady
to have such a supportive and caring daughter. Thanks for the reminder about letting the docs know about everything. Thanks to this group I
have been empowered to speak up and ask a few more questions. Finally getting some good quality care. Didnt know before about the abdominal area, havent
heard much about that with WG.
cheers Col 23

[cutecats2]

Hi well there is intestinal involvment but rare .. of course my mom has everything rare .
anyway they are just going with cancer at this point . but wont test for any wegeners tissue .
so really i doubt the doctors know what they are doing with it .. they have never seen her case .
now the tumor that is fast growing is attached to her intestine and ehat is left of her cervix and now attachng to her bladder . there is a chance they can clean everything out and attach bags ..if they miss a cell it will come back . but waiting for the conference call . my father and brother seem to think i shouldnt go up to see hr yet . my son is still in school and my husband is trying to arrange time off from work .
we are heading out on friday morning . only abotu 3 hours to where she is . by then you never know they may move her . she is refusing surgery and really i cant blameher but the death is long and hard .. i really dont know i still think the wegeners has a hand in it but again the docs dont want to even learn .. or see ..
either way the tumor has made its own tube and i know this isnt what i should say on a forum but her fecies is coming out her woo hoo .. its terrible and a horrible way to go . this is extemely rare the doctors really do not know they again have never saw this and she is in one of the best hospitals ..
oregon health and science university . hospital . anyway .. this is extremely hard and thanks soo much for the replies .. again take care of yourselves !!!
Diane

[cutecats2]

Hi all thanks for listening to me for these past few months ..
Mom passed away on July 1st .
she had wegeners and a teratoma ( symbiotic twin ) and the thing that finally got her was
squamicell cancer. a tumor took her entire abdomine .
she tried soo hard to survive this .. and it finally got her .
Today is her Birthday and i am having a hard time .. like i told all of you .. Make sure all the symptoms you have are checked and double checked .
huggs and take care all of you !!!
Diane

[Lola]

Oh, Diane. I am so very sorry for your family's loss, as well as the suffering your poor dear Mother had to endure. Thank you for sharing. I know that she is in a better place.

[Jack]

So sorry to hear about your Mom's passing Diane. I suppose it could have been connected to Wegener's or the drugs used to treat, but maybe it was just another of those tragic happenings. Your Mom certainly had her share of bad luck towards the end.
With all my sympathy,
Jack.