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erin.K
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Date Joined Mar 2005
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   Posted 8/31/2005 3:15 PM (GMT -7)   
okay...this will probably interest Susie, so I hope you get to read it.  and Flopsie too (nursing expertise).
so we all know i had the colonoscopy done aug. 5th.  and it was bad inflammation like everywhere specifically most of all in the small intestines.  my doc kept referencing "colitis".  but...and Flop can back me up on this....isn't inflammation in the SMALL intestines a Crohn's? right?  and colitis is the COLON??  now when he said SMALL INTESTINES i thought "crohn's"....but never questioned his answers.
 
Well.....today i had my first follow up appt with my wonderful PCP.  he asked if my ears were ringing this morning.  he and my GI were discussing me at the hospital while they were making rounds.  and then my doc said, "it's terrible i'm so sorry...i wish it wasn't you".  and i'm like what???
 
i read the pathology report and it is really bad.  i took it very lightly cause i thought everything was fine and just ulcerative colitis.
 
turns out i have fulminating Crohn's and ulcerative colitis and Crohn's colitis.
 
he said the GI is really concerned about me and to make sure i take these pills.  my doc said the GI told him it looks like a weed whacker went to town in my bowels.
 
and something else with the cecum? i didn't understand.  and para-neoplastic??  i have to look that up too i don't know what that pertains to with GI.
 
so from top to bottom is a disaster.
 
overall it's all autoimmune related.  also mentioned something about psoriatic arthritis.
 
too many things for one visit.
 
at least i got the truth.  i don't know why the GI just didn't come out and tell me the diagnoses??  unless he new i'm in nursing and took for granted that i knew what that meant?? oh well.
 
interesting stuff eh???
 
trying to not let this get me down....right when i was on a positivity streak.  i guess ignorance is bliss.  i'm just gonna take the horse pills and forget what i heard today for a while.
 
hoping i don't get hit with anything else
 
luv
 
erin   

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 8/31/2005 4:06 PM (GMT -7)   
Erin,
As a CD person, all I can say is that I'm sorry. It is most unusual to have both ulcerative colitis and Crohn's. It is very rare. Crohn's Colitis is Crohn's in the colon. Sometimes people confuse Crohn's colitis with ulcerative colitis. Crohn's can occur anywhere in the GI tract from the mouth to the anus. Ulcerative colitis is exclusively in the colon.

What meds are you taking for the CD? If you have such extensive disease in the colon and bowel, I hope they are treating aggressively enough. If you have Crohn's questions, you can get a ton of opinions on the Crohn's Forum.

Many of us with CD have other autoimmune issues. In addition to the CD, I have spondyloarthropathy with enthesopathy, asthma, and now possible lupus.

Please take care of yourself. --Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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oreo
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   Posted 8/31/2005 8:00 PM (GMT -7)   
Erin, what else can I say but...wow.!!!

You have been so strong through all of this and now you are getting hit with something that is possibly worse. I am so sorry that this has happened to you.

Now that you have a firm Dx, it is time to really take stock of everything in your life and decide what is the most important thing to aim for and accomplish and then just set out and do it. The other things that aren't that important put on the back burner to accomplish later. Hopefully there will be no more diseases thrown your way and you can work at healing from the ones you have. It is such a relief to know that you do not have cancer. My heart has been in my throat for a few weeks as you still have seemed to get worse. I so hope and pray that the road to recovery will start really soon and be very, very short.

We all care so much for you and it breaks our hearts to hear how much stuff you have going bad for you right now. Hang in there girl. We are all pulling for you.

You continue to be at the formost of my prayers.

Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 8/31/2005 9:13 PM (GMT -7)   
i still do not know how ALL of this can happen to one person. i'm thinking today...okay, what possibly else can go wrong?? every system now has been effected.
all these years i thought it would get better & better every year,only to find it got more and more complicated.
it's sad knowing that the last time i felt good was when i was 13.
and all of this came about from a tiny tiny tick. i wonder what my life would have been like if i was treated for Lyme's disease. but then again...maybe i wouldn't be on the path i am on now too.
my mom was so sweet tonite, well you know...as a parent you feel helpless when you can't "make it go away" and she was really upset about this triple fold diagnosis of GI problems. she said, "i don't know how you do it half the time. you're so brave." she went on about me with the pain and all the problems yet not wanting to give up on my goals.
right now i look at people i went to school with and they are all working and all passed their boards and are all RN's already. and if i were like them, that would be me too. it's hard having to quit leave and come back again and then have to quit again because of this disease & all the complications.
i really just want to forget all of it.
i was in drama and theater in college so maybe "acting" healthy will work.

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 9/1/2005 5:46 AM (GMT -7)   
I'm hoping for the best for you Erin. It sucks, stay strong.
Craig

Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 9/1/2005 9:46 AM (GMT -7)   
Erin, I am so sorry to hear of the multiple problems you are facing. I pray you are on the road to recovery. I'm glad to hear that you are not suffering from cancer. I can really relate to you. I have also been hit with a lot of autoimmune diseases. My problems began in 1991 when I had Graves disease and had my thyroid removed. I then developed congestive heart failure which has been the most severe of my illnesses. Then came ulcerative and lymphocytic colitis (which resulted in a NG tube for feeding). Most recently was the RA diagnosis several months ago. I am surprised at the number of different medical diagnoses I have received too. I didn't think any of them were related until discovering the autoimmune connection. I refuse to give up on my goals also. I completed my masters degree and got licensed while sick (I'm a mental health therapist). I qualify for social security disability, but chose to work instead. Granted, I have had to make some major lifestyle changes. I now work part-time...and only the days that I feel well. Some weeks I work 15 - 20 hours a week, others none at all. I have learned to budget my time and work around the times I feel poorly. I always remind myself that things could be much worse. I am not paralyzed. I am not in the final stages of cancer. I am not blind, nor deaf. I can get out of bed most days. I can do so many things that others can't do. I feel very grateful for what I do have. I will continue to keep you in my prayers that you are feeling better soon. With love and hugs, Juliah

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/1/2005 10:00 AM (GMT -7)   
today i DID....and i failed; but at least i know i'm not a failure. i have to keep in mind that all of these things will always be there to do.....work, school, apprenticeships...but i may not be.
it's heartbreaking. will do again in the future.

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/1/2005 12:38 PM (GMT -7)   
to expand on what happened....i was up all last nite with bad pain in the shoulders and back and hands , they were throbbong & couldn't sleep. i had to be up @ 630am to get ready to take a test in order to complete specialty clinincal in October.
needless to say it was torture just sitting...but i had to run to the bathroom every 5/10 minutes with BAD pain and bloody BM's.
time ran out for the test.
if they let me i might be able to retake it next month.
just disapointing.
i thought pure will power would be enough to get me through it.
not feeling very well now. in a lot of pain.
have to make some other plans for the meantime
luv,
erin

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/1/2005 3:53 PM (GMT -7)   
Erin,
Many people with Crohn's find that stress can really aggrevate a CD flare. Sounds to me like you have more stress than your body can handle. My concern is your bloody D and the pain. I can't recall if you mentioned what meds your GI gave you. I know you started them only recently. If you are taking either Pentasa or Asacol, it can take some time to work. If you are at the 3 week mark with the meds and are still having multiple bloody stools per day, you might need something else. I suggest that you try to limit your diet with regards to fiber. Fresh fruits and vegetables, nuts, and other difficult to digest foods can further aggrevate the inflamed colon. My GI explained that eating something like lettuce when I was flaring was like rubbing a SOS or Brillo pad on the inflamed areas of my intestine. The gut then responds by trying to quickly expel the offending food. Soft, easy to digest foods for a time might get you some relief from the pain.
I hope you can get control of this soon,
Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/1/2005 7:42 PM (GMT -7)   
dear Ides,
thank you for your advise. i am greatful & in need of it as well for this is all foreign and new and kind of scary for me. i am on Pentasa, 16 X's a day but will get the 500mg 8 pills a day soon. also on prednisone when needed and Humira. i am thinking the docs might want to put me on Imuran, but have not heard anything since they mentioned it.
you're right...veggies hurt. all of the things i love hurt. salads, peppers, artichokes, romain, spinach.... i am pretty much a vegatarian despite eggs and cheese! over the weekend i felt better just having mashed potatos and italian bread with olive oil. pretty bland. i am tolerating the pentasa better. i was getting that acute intolerance with bad cramps, fever and headache but i took them all today and so far it's ok.
i just can't believe this disease is completely systemic now. joints, eyes, lungs, heart and now GI. i honestly feel on the verge of a breakdown...but i think i already had one. been trembling and shaking all day...it's better now.
what also really sucks is that this disease also effects my ovaries...they fill with blood and fail to break (had surgery to remove tumor from one ovary in 2001) and i know i have a cyst again cause i can feel it. having an ultrasound as soon as i can get an appt.
this disease is relentless in the severe state.
the good news is that i am not just going to be "lost" since i had to leave school. the foundation where i was positioned welcomed me back to help out as soon as i see fit. at least i know i have a place where i can be of use...because i am sure you and everyone at some point knows and feels the sense of worthlessness and failure and disapointment. so i am grateful for that.
who knows what the future will bring. i'm all cried out for today.
all i can do is keep my good references and all from work and school and get back into the motions in the future....all i know is that i will accomplics all i set out for; but perhaps this is just not my time.
you have been great and i thank you. believe me, i used to be much better at coping. but you know when things just keep piling up and piling up...a person can do only so much.
hopefully what i am going through now, i will be able to help someone in the future who has to go through the same thing.
take good good care & a peaceful nite
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/2/2005 12:16 AM (GMT -7)   
i decided i am getting a second opinion on the diagnosis for the CD and UC. not to appeal the diagnosis...i just want a "better" GI doc to check out the slides and path and make "sure" it is a definite & that i'm on the right meds.
i have it for october 17th. he's a real cut n dry GI doc. the best in my county. he found my grandmothers colon CA fast! she kicked it's butt!!! go granma!!!!
nothing like those WWII teens. they're fighters.
i feel i did the right thing since my GI gave me half a** information over the phone.

Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 9/2/2005 7:03 AM (GMT -7)   
Erin, the more I read your posts...the more I find we have in common. I also have been having a lot of trouble with my ovaries and have had several surgeries to remove cysts that would grow and grow and grow. I'm just starting to find that their is a connection with all of the things that I've been through medically. I also had surgery for melanoma last year, but not sure if that is related in any way or not...not sure how it could be. I also have restrictive lung disease as my chest wall caves in a bit (doc says it is can happen with tall, thin women). I never considered if the lung problems were related to anything else. Hmmm. I wonder what kind of doctor can connect the links for me? Any idea????

I'm also a vegetarian and have been since I was about 18.

Take care Erin! Love and hugs, Juliah

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/2/2005 10:50 AM (GMT -7)   
Wow Wow Wow, Juliah....we've gotta find our family tree!
what i can explain about the ovaries and all is that many theorists do believe that endometriosis is an autoimmune disorder & that women with RA and other AI diseases are likely to get inflammation and scar tissue on ovaries...sometimes called a "chocolate cyst". it's all from fast cell growth. these cysts develope from inflammation and the tissue responds by the cysts filling with blood. then leading to great pain or abcsess if they do not break. (that's what my surgery was).

so is this flail chest?? the lung disorder. i have emphysema from a failed diaphragm nerve (inflammation) and rheumatoid lungs. the constant pleuritis state caused chronic hyperventalation just to get enough air in...and therefor emphysema. peole are like...so you're a smoker! never smoked once in my life!!

many rheummies don't make the connection with the lungs. but the super rheummies do!! it does exist and many people suffer from it.

just goes to show how everything is connected.

i'm bummed about having to change the way i eat! not fair!! i hate meat!! what i'm a to do without my veggies that i devour?? i probably can keep a lot more veggies than i know of...just have to check out a diet.

take good care,
i hope you found some of this ovary stuff interersting!
erin

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 9/2/2005 8:43 PM (GMT -7)   

Oy, Juliah and Erin - my heart is killing me reading your posts! Big hugs to you both, I cannot BELIEVE what you are both going through!

Erin I am SO glad you are getting a second opinon - your doctor sounds a little fishy to me not giving you the full diagnosis from the get go. I am concerned about the fact you are still having bloody BM's - did you call the doctor today re: that?

I would post on the Chron's forum to get as much advice you can get in regards to diets and dealing with this. I went there for Remicade advice a while back, everyone was very nice.

Take care = I hope everyone has a relaxing, PAIN FREE holiday weekend!

**


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/2/2005 10:13 PM (GMT -7)   
eyes  my GI doc redeemed himself today.  something tells me & i have a gut feeling that the GI doc and my PCP were in each others company today at the hospital.  i think my PCP spilt the beans and told screwy GI that i did not appreciate NOT being tols i have CD, colitis, and UC!
needless to say, at 2pm this afternoon GI guy calls and says, "ok i need to go over the pathology and biopsies with you."  this is like out of the blue!
 
no lie...he talked for 45 minutes!  he explained EVERYTHING in depth.  he was definitely doing a CYA (covering your a**).  he also gave a little apology as well as to not informing me about the seriousness of all of this further.
 
many people had to view the path slides and it was a very complicated case.  he explained all the stuff with the funny looking cells, lymphocytic stuff.  that's why it took a long time for path to come in.
 
so i am dealing with an intricate case of GI problems it seems.  he recommended i see a specialty hospital in NY that deals specific with autoimmune stuffs.
 
he was happy to hand over my med records too.
 
i really think my PCP said something to him.  at least it is good to know that some docs actually look out for ya and watch your back!
 
been taking the pentasa alright.  up to 8 pills a day.  lots of stomach discomfort and pains.
 
and that's the story.
 
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/6/2005 5:23 PM (GMT -7)   
hey all,
just wanted to give an update on how things are going.  my pharmacy filled the wrong dose for the Crohn's/Colitis med.  so i got that straightened out just now.  i will be refunded and credited towards my next refill.  thank God.
the BM's have been pretty bad, especially on the meds.  living off mashed potatos during the week.
 
    yeah  i did have a VERY NICE WEEKEND!!!  it was very encouraging too!  i made breakfast for my honey Sunday morning, dinner sunday nite, lunch monday and dinner monday nite....and i planted a new house plant too!  yeah
 
this is like a major accomplishment compaired to other wekends.  i did run into some trouble here and there...but it was nice at least to do a few "normal" things for a change.
 
my Joey was soooo HAPPY!  he ate the WHOLE tray of sausage and peppers i made!  and ya know i have competition since he's got an Italian mother!!! LOL.  but he was really really happy for me.  and it made me feel good to see him that way.
 
in a good deal of pain...but this weekend was priceless.  it felt so good just to do a few things.
 
very greatful for the small things.
 
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/6/2005 7:59 PM (GMT -7)   
confused  i'm confused.  i left the house saturday at 95 pounds.  ate a good bit...more than usual over the weekend...and i came home @ 92 lb?  i guess that's just how it's going to be now with the CD on top of the RA.
when people flare with RA...does anyone fluctaute in weight due to swelling??  just thinking of why it yo yo's like this all the time.

CaMama
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Date Joined Mar 2005
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   Posted 9/6/2005 10:56 PM (GMT -7)   

As well with me too.

**


 


erin.K
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Date Joined Mar 2005
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   Posted 9/7/2005 9:29 AM (GMT -7)   
this really is torture...being petrified to eat now! going to take it easy. maybe just a few non dairy liquid shakes today. solid foods hurt. such a bad squeezing painful feeling in the same spot all the time. and then ya usually "go".
i did a fair amount of walking yesterday...legs hurt quite a bit.
just hoping it doesn't get any worse.
erin

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 9/7/2005 12:23 PM (GMT -7)   

ow! that sounds awful, of course, walking pushes it out as well...doh!

Well, when the kids are sick with the big D - the doctor tells me to keep them on the BRAT diet = Banana's Rice Applesause and Toast. No dairy, no roughage, no nothing else except pedialyte...I wonder with chron's if that'll (brat diet) help calm the bowels down as well during a flare?

I hope you feel better soon.....that is a horrible disease you are enduring...I hope you find some relief very soon.

**


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/7/2005 3:36 PM (GMT -7)   
hey Camama,
lots of people swear by a liquid diet while flaring. from what i am reading that is. i might as well be a campfire!!  devil Crohn's flare, RA flare!! a flaring as*hole!!  devil LOL. quick...someone get the fire extinguisher! devil

i'm wondering if i should call the claims adjucator for SSI and tell him the diagnosis???  confused i would hate for them to have to make me WAIT even longer...but maybe it will help my case?? hmmm. confused
what do you think?? should i call?? i wonder if they know?? i did report going in for a colonoscopy...but i wonder if they would obtain the med records??

only have 4 more pills to go then i'm done for the day with the Pentasa. supposed to take my HUMIRA shot this week...but my tummy's so sore...i'de hate to get a stick there too! mad

something about Pedialyte makes me nauseated! don't know why.

have been craving rice though.

are your knees screaming today?? mine are.

talk to you later
erin

Post Edited (erin kachmar) : 9/7/2005 4:39:15 PM (GMT-6)


CaMama
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Date Joined Mar 2005
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   Posted 9/7/2005 7:28 PM (GMT -7)   
I would call and say something to the effect of, "I'd like to discuss some additional diagnosis' I've received since my claim and have some questions regarding them, please call me back....."
 
I'm sure someone who's dealt with them more than me might have somethign better to suggest, but I think personally you should call - but don't leave them a message telling them what you need to say, keep it vauge but important enough to make them HAVE to call you.
 
My biggest complaints right now are my feet have been hurting as well as that side/burning/liver(?) pain is really acting up.  sad Been just feeling slow and blah (not right) since about last Thursday.  Fall is always my worst season with general all-around problems, followed by early Spring....it's strange......
 
Have a good evening.
***
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/8/2005 8:07 PM (GMT -7)   
nono  i did a BIG no no!  i caved!  after a week of bland bland bland food to rest my gut...i went in for the big guns.  had a bowl of cookies n cream with cool whip and cookies.  oy....yuck!  learned my lesson!  it was fun going down....now i feel like i'm about to barf.
 
and to boot...the goodies didn't make my knees feel any better either. sad hurtin something awful.
 
the Valerian didn't work last nite.  up still @4 am mad .  not liking the looks of tonite...hope the pain doesn't keep me up.
 
oh no!...my honey wants me to cook again sunday!  i've created a monster!  i pray i'm well enough to do it...makes him so happy.
 
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 9/9/2005 7:31 PM (GMT -7)   
eyes  Whoa....i don't know if i am getting sick or what.  or maybe it's from the Humira.  but boy am i WHITE! eyes    and pasty ....god awful pale.  also feeling lightheaded.
 
hoping it's just from zero sleep last nite.
 
or maybe it's a combo of the meds?
 
my skin doesn't look right.  and i lose some vision when i get up from sitting and lying down.  wonder if it's BP?
 
anyone get this???
 
strange.
 
oh....potato salad poisoning! tongue see....sheer exhaustion from slaving over the onions.
 
no really, i look bad. 
 
hope it goes away.  don't need anymore hospital stays.
 
here's to a better tomorrow.
 
erin

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 9/9/2005 8:55 PM (GMT -7)   
Oy, Erin!
 
First off, what the HECK were you THINKING eating ICE CREAM!????? Along with the other things mentioned!!!!  nono WHat, you hopin' to push out the innner lining of your bowels or something???? tongue
 
Secondly, yes, those same symptoms I have dealt with when my sleep is non-existent like your have, but in your condition these days, I would not risk it!!!! Call the doctor! 
 
I wish I could offer suggestions for sleep, but I have nothing much more than what has been suggested. My dad always had me lie down and take a deep breath and let it out slowly. Then he'd say in a low soft voice, 'your feet are getting heavy...all the way down....now, your calfs are getting very heavy and your knees are getting heavier and heavier...." and just focus on that. I came up with a breathing thing that sometimes helps as well - take a DEEP SLOW breath through your nose and imagine that breath moving all the way down to your toes, then SLOWLY exhale imagining something in your toes pushing that air all the way back up and out of your body - kind of like a circle.
 
I know when you are in such horrid pain, really nothing can help other than somethign blocking that pain.....I know you are not big on depression meds - but those SSI inhibitors, I know are also great for chronic pain because they help block the pain signal to your brain. They keep you up at first, but after 2 weeks your body adjusts and you can rest.
 
Wishing you a good night's sleep and better health!
**
 

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