Medical Forum / Diseases and Disorders / Arthritis / August 2005
Whew, a bit of a rough patch!
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Newsgroup Spambuster - 06 Aug 2005 01:41 GMT Well, it has been a bit of a rough patch these last 2 days.
Got an email this morning from my aunt that my cousin has just been diagnosed with cancer. She is only about 50 years old. So young! She has a large mass on her upper abdomen and also on her liver. Thus far, the doctors prognosis has been quite grim for her. My aunt emailed me about it and ask me to let my parents and the rest of my family know as she just didn't have it in her to tell them. This is the same cousins of mine who lost their brother, Mike, to a severe astthma attack back in 2001. I don't know what my aunt and uncle will do if they lose another of their children! What a heavy weight they carry! Uggggh!
In any case, I spent most of last night and today being very ill and spent a good portion of today at the ER. Have been passing nothing but blood for the last 2 days with lots of cramping and pain. The diagnosis they gave me in the ER is ulcerative colitis. Anyone here ever deal with this at all? I am hoping to be able to stay home and out of the hospital, but we'll see. I was so dehydrated from all the fluid loss and I have absolutely no desire to drink or eat. Hopefully I can push fluids this weekend and hopefully this stuff will settle down soon! Am more than likely facing a bunch of testing and a colonoscopy in my near future, but for now am just wondering if any of you have dealt with this condition before???
Yuck! Somebody please stop the rollercoaster.....I want to get off!!!
Hugs to you all!
Donna G
Rosemarie Shiver - 06 Aug 2005 02:13 GMT Dang, Donna,
Sorry your cousin has such a bad Dx. And sorry 2 that you had a bout of colitis. Unfortunately, it does tend to recur. The very best place to know all about it is alt.support.crohns-colitis where you can ask anything about it from those who know best. Lots of good ppl. there, Hon.
Hugs from Rosie
-- "If you wanna get it done, you gotta fight for yourself." -- Meat Loaf, Bat Outta Hell II
> Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G Gwen Love - 06 Aug 2005 02:29 GMT Donna, enough already! You really have been having much more than your share and I pray it stops very quickly. Maybe you need to go to hospital to get this taken care of. You know we will be praying for you. So sorry about your cousin; prayers for all the family. Gwen
> Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G Carole - 06 Aug 2005 03:48 GMT Sending prayers for your cousin and for you, Donna. My Mom had ulcerative enteritis, but I don't know what the difference is between that and what you have. Did the hospital rehydrate you? When my Mom was alive, I used to have to take her to the hospital to be rehydrated with an IV. She had a few colonoscopies but they gave her something that semi knocked her out so she didn't feel anything. It was probably the same thing I had when I had my heart catheterization. The anesthetist called it my "happy hour" and I have to admit I felt good :-))))
Carole
> Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G Brad Clarke - 06 Aug 2005 04:01 GMT >>In any case, I spent most of last night and today being very ill and >>spent a good portion of today at the ER. Have been passing nothing but >>blood for the last 2 days with lots of cramping and pain. The >>diagnosis they gave me in the ER is ulcerative colitis. Anyone here >>ever deal with this at all?
>>Am more than likely facing a bunch of testing and a colonoscopy >>in my near future, but for now am just wondering if any of you have >>dealt with this condition before??? The guy I work with has it.
He is on medication for it, and it is under control for the most part.
He had a colonoscopy (which he refers to as the butt-cam), and that's how it was diagnosed. He has to go annually now for check-ups.
Sarah L - 06 Aug 2005 06:58 GMT Now watch it Donna, you are over your limit of bad stuff too. I want off the roller-coaster too. Here, lets go sit in the shade over there. {{{{{hugs for you and for your family}}}}}
Sarah L.
Harvey R. Stone - 06 Aug 2005 14:11 GMT > Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G May God bless you with a time of peace and quiet. May your doctors do their best to get this all well. They deal with this all the time. I have not. I think that shaaady spot over there is a good idea and I can just squeeeze in. Please let someone else pass the bad news. Some of you guys move over. I want to give my Donna G. a hug.... (((((((hugggg)))))))
Harv
Joan Carter - 06 Aug 2005 16:50 GMT >May God bless you with a time of peace and quiet. May your doctors do their >best to get this all well. They deal with this all the time. I have not. >I think that shaaady spot over there is a good idea and I can just squeeeze >in. Please let someone else pass the bad news. Some of you guys move >over. I want to give my Donna G. a hug.... (((((((hugggg))))))) Sending chocolate for all you shade-sitters. You'll have to eat it quickly so it doesn't melt. Can you handle that? It is my very best healing chocolate. :-) --- Joan
Diane - 06 Aug 2005 16:20 GMT donna, my boyfriend has ulcerative colitis, although they've recently changed the diagnosis to "crohns colitis". he had it for many many years, then it went into remission for nearly a decade and came back this year. you might remember me talking about it on this list. they couldn't diagnose him at first, misdiagnosed etc. finally was diagnosed by cat scan. you want to be cautious with colonscopies if you are still inflamed--they can do damage.
anyhow, they put john on massive doses of prednisone, a drug called asecol, and a couple of antibiotics specific to UC/crohns. he did much better on the prednisone. they tapered him off the last five mg too quickly in my opinion (he started at 60, tapered down 5 mg/week, and when he got to 5mg, they just stopped him the next week!!!). he flared and had to go back up to 40mg. this time he's promised to taper off that last 5mg more slowly. he'll be on the maintenance drug asecol for the rest of his life. when he stopped it the last time is when he went out of remission.
you will be amazed to discover how many people have UC (it's autoimmune, by the way). i have several other friends with it. it usually strikes young adults, but two of my friends are in their sixties.
one thing: john was initially misdiagnosed in january as having c.difficile, an opportunistic infection from having had too many antibiotics. it's something to consider if you've been on a lot of antibiotics lately.
also, he lost 20 pounds in under a month. he lived on ensure and learned to love it, so you might consider that to keep your strength up. he also ran a constant fever. do you have a fever?
hope this gets under control quickly. please keep us posted.
diane
Kelly - 06 Aug 2005 18:07 GMT Too much happening Donna. Sending good thoughts.
My girlfriend had c.difficile from a strong antibiotic Diane. Wouldn't wish that on my worst enemy. She was pretty sick. The ulcerative colitis is almost under control for him is it? Would be nice to have it under control before the move. Hopefully he has found a good doctor in the new place.Tapering on prednisone is such a touchy thing but boy what a wonder drug.
Hope this move goes okay and Donna - please stop the train you are on! You need a break. Will be praying for that.
Kelly
Newsgroup Spambuster - 06 Aug 2005 23:41 GMT Hi Guys,
Thanks you ALL so very much for your prayers and for your concern.
Just got another email from my aunt and the news is definitely not good. My cousin saw the doctor yesterday and the cancer is now in her lungs as well as her liver and upper abdomen. She was told she has a 1 in 4 chance of surviving this all. Monday they will do some bloodwork I guess to see if her body will even tolerate the large doses of chemo that they would have to give her to try and treat this all. It is so sad and sure leaves one feel so helpless as you realize there is nothing you can do to make this all better. Many, many prayers are going out to her and this is our one hope for healing!!!
I am plugging along. Carole---yes, they did hydrate me when I was at the hospital and then again yesterday when I was at the doctors office. Keeping hydrated seems to be the biggest challenge especially when you have so much cramping and such. Doesn't make one overly eager to put anything in their gut at all. They did put me on an antibiotic as well and I'm not sure what the next step will be----probably a visit to the GI docs. They told me not t eat anything for at least 2-3 days and told me to drink lots of clear fluids. Also told me to buy some gatorade and mix it half and half with water and drink at least one full glass per hour. Yuck---I hate the taste of gatorade! This sure is a miserable thing and I pray it is not going to become a constant to have to deal with! Uggggh.........its also a bit scary to see nothing but blood!
Harv and Sarah, thanks.....I will definitely join you under that shade tree! Sounds so peaceful and relaxing!!! Harv, thanks soooooo much for that heartfelt hug----you'll never know how much that means! Joan----thanks for sharing your best chocolate!!! That is so generous of you! Harv----I did tell my entire family about my cousin, but they know I am not feeling all that well, so one of my brothers has taken the ball now and will notify family of updates and such. He is also sending my cousin some flowers from all of us and a care package from us to let her know we are there with her and pulling for her! I am thankful that my brother is taking care of this all and is willing to do so!
Diane, maybe when you get more settled, you or John could share a bit more with me about this colitis stuff. I hope it heals and never comes back, but my doctors don't seem to think that is going to happen. Sure don't want or need another autoimmune disease and especially this type of thing! I know, I know, things could be so much worse and I should quit my complaining!
Thanks Kelly and Gwen for your prayers and encouragement as well.
Lots of hugs to you all and wishes for a lovely weekend for everyone!!!
I gotta go lie down for a bit again. Phew, I am tired!
Hugs everyone!
Donna G
Diane - 07 Aug 2005 00:52 GMT donna, what antibiotic are you on? of course john and i will give you more info when you have a firmer diagnosis. i know how scary all that blood can be. john was very sick with the fever etc first, and then he had the cramping and massive amounts of blood. MASSIVE. it can make you incredibly weak. take it easy this weekend and hold your nose when you drink that gatorade.
diane
Adelle - 09 Aug 2005 19:40 GMT Sending hugs and virtual raspberry leaf tea (good for abdominal cramping) and chicken broth. Hope this gets figured out soon.
We just lost Doug's uncle to stomach cancer. Hope your cousin's prognosis and treatment go far better than his. Bur his was an especially aggressive one that tripled in just a month or so. There really wasn't a lot that could be done.
Adelle
Alex - 07 Aug 2005 03:26 GMT Sending Good Thoughts, {{{{ Donna & family }}}}
GramPaHugs, Alex,
> Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G --
**************************************************** * Love radiating from 45.10n x 93.30w M/SP Mn * <a href="http://home.mn.rr.com/apbiii">AOL Click</a> * <a href="http://grampahugs.ath.cx/">AOL Click</a> ****************************************************
KJ - 07 Aug 2005 05:15 GMT UGH Donna!! Sending healing thoughts to both of you!!!
~KJ
Charrlygrl1 - 07 Aug 2005 14:54 GMT Donna G, I am so sorry to hear about your cousin. Sending prayers and good vibes to you and your cousin both. Regarding the ulcerative colitis-do you also have arthritis?? I've read where certain types of arthritis can also come with Crohn's, IBD or UC. Reactive arthritis, I believe it's called. It is one of the spondyloarthopathies-so is ankylosing spondylitis, which I have. In fact, one of the drugs I am on-Azulfidine-it's primary treatment use is for UC. My mom has IBD, which is a much milder deal, and I know what she goes through. I soooo feel for you. How are you doing today, is the gatorade helping? When will you be able to eat again?? Char
Newsgroup Spambuster - 07 Aug 2005 17:14 GMT Diane --- I am on an antibiotic called levaquin which is a sister drug, I am told, to cipro.
Char2 --- I am hanging in there. The cramping is pretty bad and makes you just want to lay in bed curled up in a ball. Yes, I do have arthritis. I have RA. I can not take the med you mentioned (azulfidine) as I believe it is a sulfa based med and I am allergic to sulfa meds. As far as when I can eat, the doctors only said not to eat anything for at least 3-4 days, and then I guess it is up to me if I want to try to eat, but honestly, I don't feel like eating or drinking, but am trying to drink to keep ahead of the dehydration issue. The cramping is hideous and makes you totally uninterested in putting anything in your gut, not to mention exhausting. I get so shaky feeling when I am up and in the bathroom, that I immediately go back and lay down as soon as I can. I am hanging in there though and just praying lots for my cousin and for anyone else that needs them. And of course, sleeping a lot as well.
Thanks for sharing with me about your mom. Glad to hear she is doing ok and has not too much problem with the colitis.
Haven't seen you around much lately. Hope that means you are doing better and out enjoying yourself!
Donna G
Squirrely - 07 Aug 2005 21:39 GMT Donna,
You and your family have my prayers, good thoughts, healing vibes, and just hoping and wishing all turns out well for all.
I feel so much for all you are going thru. It is kind of what I told Jim the other night, about it would be easier to handle if it was just one thing at a time, now a bakers dozen at one time. ;-)
Wishing the best.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G Charrlygrl1 - 10 Aug 2005 15:01 GMT DonnaG, Are you feeling any better? Hope so : ) Char2
Newsgroup Spambuster - 11 Aug 2005 06:25 GMT Hi Char2,
Thanks for asking. Yes, I am feeling some better. Finally got the bleeding to stop and am just today starting to add back in a few solid items such as soups, banana's, etc. My PCP says to add things back very slowly as it will still take the cramping a while to completely clear. The GI docs says they will do some additional testing, but not until the colon lining has had a chance to heal more thoroughly. I'm not sure how they will be able to test anything once things heal up, but then, I really don't have a good grasp or knowledge about colitis at all. The GI doc doesn't even want to see me for at least a month. Weird! The PCP wants things looked at right away, but the GI doc says no, so what do you do? Guess my PCP will help me along until it is time to see the GI doc. The GI doc approved the antibiotic I was put on, so guess that is a good thing. Still have a fair amount of cramping and bloating and such, but otherwise doing much better.
Have been spending most of my time this week talking with my cousins and praying with them as they struggle to come to terms with the fact that it looks like their sister will not survive this cancer. It is spreading very rapidly. She started chemo today and they will recheck her in 21 days. If the chemo looks like it is working they will continue her on it, but if it doesn't look like it is doing anything for her, they will then stop the chemo and just work at keeping her comfortable during what time she has left. Such a difficult situation and very emotional talking with my cousins and my aunt and uncle. Ugggh.
Anyways, thanks for asking and thanks to all of you for the continued prayers and thoughts!!!
Hugs!
Donna G
Charrlygrl1 - 12 Aug 2005 16:25 GMT I know this is going to sound crazy, but try not to get too stressed out. I don't know a lot about colitis either, but I do know that with IBD (which my Mom has). Stress really kicks it into high gear. And I guess we already know what stress does for arthritis. I know, I know, much easier said than done, right? My thoughts and prayers are with you and your family, Char2
Harvey R. Stone - 12 Aug 2005 18:42 GMT >I know this is going to sound crazy, but try not to get too stressed > out. [quoted text clipped - 4 lines] > My thoughts and prayers are with you and your family, > Char2 Well said and I agree with you about stress. It is a battle we all fight. against and have trouble keeping control. Harv
Squirrely - 15 Aug 2005 03:31 GMT Donna,
Glad to hear that the bleeding finally stopped. I hope it is working out with you starting to eat again. I know how that one goes. Keep us posted to what you find out about what they are going to do about it all.
Always thinking of you.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Hi Char2, > [quoted text clipped - 30 lines] > > Donna G Duckie - 08 Aug 2005 01:37 GMT {{{{{{{{{{{{Donna}}}}}}}} Duckie
> Well, it has been a bit of a rough patch these last 2 days. > [quoted text clipped - 26 lines] > > Donna G
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