Things Not Looking So Promising Today ... *sigh*

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CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/22/2008 2:45 PM (GMT -7)   
Well, I don't mean to be ungrateful for the 20 year remission and 10 years of mostly symptomatic remission but ..... things aren't looking too promising.
 
Since the gut settling down after the CTE in April I've done real well - except - a complete change in BMs for this ole gal who has tended to constipation her entire life, including her life w/Crohn's. No diarrhea, fortunately, but two soft formed a day and "skid marks". No matter how I try I can NOT seem to get and stay clean after a BM. At home it isn't a problem, after wiping I use a warm wash cloth for final cleaning. When out and about .... not so convenient. The couple of skin tags don't seem to be swollen or irritated in anyway altho its seems the area is almost always moist. Yeck!
 
And today, some minor twinges in the area where the small intestine is so distended above the narrowing at the old resection site. Not real painful but .... not a good sign either. I had hoped to hold off on the surgery untl late fall, early winter and then things were going so good I had high hopes I'd beat it back into remission again but ....
 
I know I should be eating six small meals a day but .... for one thing how in the devil does one eat a balanced diet divided into six small portions a day much less w/any enthusiasm? For another, it doesn't take a very big meal at all to fill me up for a good portion of the day so I'm only eating twice a day and feel full the rest of the day and evening. Ran some low grade temps a couple of different days this past week.
 
Had to do my 3 month Imuran blood draw today so stopped at my family doctor's office and picked up a script for a CRP and Sed rate too and then had the draw done.
 
Hubby almost had me talked into driving back to Maine for the family reunion - but - now I'm not so sure of the wisdom of that. Its a LOT further from ME to MN than from MI to MN! I don't mind pushing my luck a bit, I'm prone to doing that, but I'm thinking maybe I just might be pushing it too far to stray far from home and that 12 hour drive to Mayo.
 
Hopefully, this is just a passing thing and I'll be posting good news in a couple of days but just thought I'd bring everybody up to date.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/22/2008 6:13 PM (GMT -7)   
Hi Only thing I could recommend is baby wipes and sometimes I find a banana and cornflakes help solid things up . Hope you feel better soon. Sure hoping your not getting obst. Has your Dr. scheduled you yet ? Does sound like a long drive at least looking at my end of things. Keep in touch and let us know how things go. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/22/2008 8:57 PM (GMT -7)   
Wow, C2,,,,soooo sorry things are going badly for you . Hope you have a turn around soon and you can start to feel better. I'm afraid I have had my turn with not being able to clean up. I call it ,,Harold and his poopoo colored crayon time. Not fun, plus you wipe yourself raw trying to get clean. I take a spot of preparation H on some tp and wipe with it and then just paper. Does a better job than wipes and the Prep H helps the tender rear. Thats about all the good advice I can muster right now but know I'm thinking about you and hoping you feel better...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 7/22/2008 11:07 PM (GMT -7)   
C2 I sure hope things improve for you very soon! Sniper and Gail had good suggestions.... my only one is : wear brown underwear! Just joking.... I know how you feel... and hope this gets better PDQ>
Love and prayers always...
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis
 
 


Cleo
Veteran Member


Date Joined Apr 2004
Total Posts : 992
   Posted 7/23/2008 6:11 AM (GMT -7)   
Hi C2 Long time huh? about this remission thing. It is wonderful! BUt I find myself getting way too comfortable and I remind myself daily not to take it for granted! I am doing well. Been almost 2 years med free. I wonder sometimes if that is wise. But I feel good so I am just goin with it!

I don't have your prob. Still have the colostomy. Prob. always will I suppose. There are some advantages to this "thing"!

I hope things get under control with you! I miss talking to u! Maybe now that I have access to pooter again I will get a chance to get to know all the new peeps around here!

about that access! lol I found a wonderful man. I met him on th net! (better luck on here than I had in the bars! ) he lived 10 miles from me and works less than a mile from where I work. I recently moved in with him and life is good!

I asked him in the beginning of our relationship if he knew what CD was. He smiled and said yes I do! ( that was a first!) His daughter has Cd also! Nice to find someone who has some understanding of this crap!

Take care of yourself and I will talk to you soon!
Cindy 
 
Life isn't like a bowl of cherries, it's more like a jar of Jalapenos... What you do today, might burn your "butt" tomorrrow!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/23/2008 6:19 AM (GMT -7)   
C2 sorry to hear your not doing to well. I am with you in spirit though, as I feel something is trying real hard to cook up in me too. But I am still fighting. Hopefully maybe a med adjustment will help you??

Hopefully surgery isn't in your cards yet and you can continue to hold it off awhile longer. (((BIG HUGS)))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 7/23/2008 6:57 AM (GMT -7)   
((((((((((( hugs))))))))))))
sending you blessings
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/25/2008 11:52 AM (GMT -7)   
Thank you every one! I'm a bit embarrassed being such a big baby about this anesthesia thing. And I'm especially embarrassed because most of you have gone and are going thru so much worse than I. I've been so blessed w/such a mild form of Crohn's and so many good years ... you have no idea how much I admire and respect those of you who have gone thru and are going thru so much w/your Crohn's!!!!! You are all my heroes.

Gail Gachrons, thanks for the baby wipe tip. I've not been out to the grocery store yet to buy some. Its so nice and peaceful here at home, just hubby and I and the animals and 10 acres of peace. I'm just really in a turmoil about this surgery, not the surgery itself, but the agreeing to anesthesia and surrendering the final decision to some surgeon. THAT is such a problem for me! *sigh*

Ah, Sniper, I never thought of the Preparation H 'cause the area is always so moist. Duh. Never thought about wiping again after. (((hugs))) to you and Camilla.

Marie-Claire, I didn't find any brown underwear but I am now wearing purple, magenta and navy underwear. All nice and new.

Cleo!!! Queen of De Nial! How GOOD to hear of the turn around in your life!!!! I'm so happy for you! FINALLY someone who appreciates you! You have made my day!!! I feel better already just reading your post and knowing how much better life is for you now!

Nanners, thank you. I brought this on myself, full well knowing that it was most likely symptomatic remission rather than true remission and diddling around and NOT taking the Pentasa faithfully, and then not taking it at all. I will say in my own defense tho that I DID stay on my Imuran faithfully. I started the Pentasa again immediately after the symptoms started but it was hard to get back into the habit of faithfully downing all 16 capsules a day and now .... it may well be too late. We know most of the obstruction is due to scarring but given the response to the Pentasa some of it has to be inflammation as well. They say I am a walking time bomb now for that obstruction to take offense to something I eat and .... ah well. I've known that for some time, no surprise there. I sure hope SOMETHING works for YOU SOON so that you can put a stop to the "perking" and "activity" in your gut!!

Sugar-Marie! You are soooo right! I have now learned the hard way to NEVER trust a fart! :-)
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/2/2008 9:16 AM (GMT -7)   
C2
Just wondering how you are doing

I have faced some simuliar problems and its hard when it happens but you know we are always here to listen
You hardly ever gripe about YOUR problems
Too busy helping others.......

Take care of you plz

We ALL luvs ya tons

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/2/2008 3:43 PM (GMT -7)   
I'm going to steal a suggestion. Another poster (I'm bad with names) said that his doctor suggested a fiber supplement called Prodiem (I got some in my local drug store). It is about the only one that I would think is OK for technical reasons. He said that it helped solidify his poop and he even got clean wipes when he used it. I have been using it for the opposite reason and it doesn't give me any problems.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/2/2008 3:46 PM (GMT -7)   
Thanks, Lynn and Keeper. I'm doing okay again, thank goodness. BUT some dirty bird mailed my letter to Mayo so .... we shall see "wha hoppens".
 
Keeper, I'll check into the Prodiem - just in case.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/2/2008 10:13 PM (GMT -7)   
Can you say ,Chirp Chirp ??? of course you can...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/3/2008 5:37 AM (GMT -7)   
Dang why cannot ppl keep there noses out of other's business
Sorry C2

Hope all works out and you get back to feeling a whole lot better

Luvs
LYN


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

Post Edited (Howlyncat) : 8/3/2008 7:49:45 AM (GMT-6)


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/3/2008 6:15 AM (GMT -7)   
Hey, Sniper! I agree. I acknowledge I have a yellow streak a mile wide running down my back. So, yeah, chirp, chirp!

Lynn, the only ones who could have mailed that letter are my family so I guess I can make allowances for their worries. IF I TRULY didn't want it mailed I shouldn't have left it sitting out for them to see. I just am reluctant to agree to surgery until I feel bad enough. And just couldn't tell if things were gonna get better - or worse.
 
When the doctors keep telling you you are a walking time bomb its hard not to get spooked at minor symptoms when you're not used to having any symptoms at all. That's part of what makes the decision so difficult. In most things I'm quite conservative and not one to gamble.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 8/3/2008 7:18:04 AM (GMT-6)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/3/2008 6:54 AM (GMT -7)   
Well in that case I guess it is the family that loves you enough to worry so much that they felt it was needed and yep leaving it out ....lol

I do understand your way of thinking
I have been facing my own mortality as of late with losing Mom and then Dad not too long ago it is hard when they say that too you.... the docs I mean and for sure it scares the Crap ( pun not intended but ok)

I hope all DOES work out I truly do
You are in my thoughts and prayers
Plz keep us posted we are always here for you too ya know

LYN

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/3/2008 4:49 PM (GMT -7)   
Thanks, Lynn. Yes, I so know you are all here for me - and for each other whenever we need each other. That's what makes this HealingWell Crohn's forum the GREAT forum that it is. Its memebers.
 
And, you know, its NOT that they are telling me I am a walking time bomb. Heck, they've been telling me that since 1999. Its that I could see for myself the additional distention above the stricture above the anastomosis myself. I didn't need anyone to point out the difference between last year's CTE and this recent one. It was distended as large as my full stomach. A good third larger than last year. I have the CDs of both.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 8/3/2008 5:52:57 PM (GMT-6)


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/3/2008 8:42 PM (GMT -7)   
C2,,I was not suggesting that you were chicken. You said a little bird mailed the letter. I thought you were refering to yourself. I would never be in a hurry to let them cut on me either. Anyway birds go chirp chirp,,,chickens go,, PADOCK !!!
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/4/2008 6:36 AM (GMT -7)   
Hey, Sniper. I've got NO PROBLEM w/admitting I'm a chicken pooh-pooh when it comes to surgery!! What they take out they can't put back in and every surgery causes some scarring. Besides there's the darn anesthesia bit which is my biggest hangup. Just call me a control freak. I don't care. Just DO NOT call me later for dinner!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/4/2008 9:12 PM (GMT -7)   
I have quite a few scars C2. Not all were given to me by people trying to help. Those were the scary ones and they did not come with anesthesia. I know your not fond of what you may have to do, but I know you have a good head on those sholders and you will do what is best for you. Thats all anyone can do. Just know that we are behind you all the way.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/5/2008 7:53 AM (GMT -7)   
Thanks, Sniper. Yeah, I sure do know our members are there for me and anyone else who needs some empathy due to this DD. That's what makes this forum such a wonderful refuge as well as source of advice and knowledge. Things are still going good again. Thank goodness! Some of the problem MUST still be inflammation that is responding to the Pentasa.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/5/2008 7:02 PM (GMT -7)   

C2, I hope you are feeling better.... I also hope you ca skip the surgery. I hate the idea of surgery myself and I am going to fight as long as I can not to have it. However, If I have to, I will.

As for anesthesia, I guess I should worry but am I the only one that likes it? I get the best sleep ever cool

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/5/2008 7:38 PM (GMT -7)   
Hey C2 - not sure where in Maine your reunion is but I have a great GI if you needed to see one while here. That wouldn't help much w/ your surgery situation. How long of a flight do you have to mayo vs. flying from Maine to Mayo. A flight is a flight in my book. If the difference was a drive vs. a flight than Id have to weigh it. But the way you are feeling I doubt you want to drive all the way to Maine. Flying sucks and is stressful but at least its quick.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

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