Having a low self esteem day.

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/15/2007 12:35 PM (GMT -6)   
So, I am meeting a big group of friends after work, and I wanted to wear this cute skirt, but I felt like the stupid bag was showing. So I did the whole try on a million things and end up with all of my clothes in a heap on the floor. Poor Hubby was trying to tell me everything looked fine, but I just felt like I could see the darn thing no matter what. I finally settled on a skirt, and went to work. (I was late, because of all my hysterics in the morning.) Then, after only a little over an hour at work, I had to go home to change my stupid bag completely, because that sore/ulcer thing that no one knows what it actually is was bleeding through the wafer - AGAIN. And I got stuck in traffic. Now I am back at work, and the new wafer is itching me like crazy.
I am having an "I hate this bag" day. Please tell me everyone has these days, and I'm not alone in my craziness. Wah, wah, wah. I feel like crawling into bed and putting the covers over my head, not working and going out in public.
 
Sorry for the whine.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/15/2007 12:42 PM (GMT -6)   
sfgiants,
 
A Little Whine with your Cheese!!  You bet - I think we all have those days or we wouldn't be human!  Just being able to vent those emotions is what we are here for. 
 
So are you saying that your weeping sore is not any better at all?  When do you talk to the ET again?
 
I hope you have a good time this evening even tho your morning has sucked!!  GO, laugh, enjoy yourself!!!  And then be sure to tell us all about it.  I'll be thinking of you.
 
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/15/2007 1:02 PM (GMT -6)   
Peggy - Luckily, I go back in to see the ET nurse tomorrow. It has gotten a bit smaller, but it is still weepy. So strange. Thanks for your support. It's nice to get the whine out somewhere that people understand. My husband tries, but when I fall in to that particularly bratty mood, I can't help but think he doesn't really understand. Poor guy.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/15/2007 2:20 PM (GMT -6)   
Can someone please pass the cheese and whine my way???  I have been having many pitty parties lately for myself - they have all been internal parties but I am sure my family can tell that I am not in the best mood. 
 
I can completely relate to your situation.  ALL of my pants are tight in my tummy and they use to be loose.  My clothes feel like a confined straight-jacket.  My hubby say, "oh, just go buy larger sized pants."  Uh, NO THANK YOU!  I do not want to be a larger size!  All of my clothes fit great 3 months ago!  I try many different outfits on daily!  These are too tight, those are too low and rub my stinky stoma, others show the bag. I feel like Goldilocks...except, nothing is "just right." 
 
I normally do not complain, but you caught me at the right time!  I am having a bad day too.  To top it off, I keep gaining weight!  Not food weight, I am holding water!  My face and fingers are puffy. At first, I thought I was dehydrated from the bag, so I drank more water.  But, then I gained 3 pounds in one day in addition to the 5 I gained from the surgery.  So, I thought, maybe I am drinking too much.  I cut back on the water, and still gained.  So, now I do not know what to think.  What I do know is that if I bike 20 miles, I lose 3-4 pounds everyday.  So, I bike everyday just to keep myself from gaining water!  This is crazy! 
 
Ok, there is my whine...followed by a rant. Thanks for letting me complain.  Now, I that I have that out of my system, I feel much better.  tongue
 
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/15/2007 6:18 PM (GMT -6)   
Amy,

Have you spoiken to your docs about your concerns? If they are that much of a concern for you, then you need to talk to them and make them understand your feelings. Ask them to help you figure out what it is you can do or not do to resolve it. Do you think your body might just be recovering still from surgery? Could you be deficient in some vitamin or mineral that could be causing this? Have you had any blood work done lately? When do you see your docs again?

I did end up changing my wardrobe a bit from what I used to wear. I don't wear low cut pants. I just don't feel comfortable in them. I don't wear anything that shows my belly - never really did and no reason to start now. I like dress pants with pleats in the front of them - more comfy for me especially when my office job requires me to sit for periods of time. I still wear fitted clothes but not nearly as often as really comfy clothes.

You are such a role model to so many with all of your energy and your sense of humour. What can I do to help you? Please feel free to email me if you wish.... sending good vibes your way.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/15/2007 6:22 PM (GMT -6)   
sfgiants,

So how was your night out with your friends? Tell all......
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/15/2007 7:49 PM (GMT -6)   
Jo and Amey,
You are not alone. I have also gained weight since my surgery and finally ended up buying larger pants in every color and a bunch of umpire waisted tops. Now, I can get dressed quickly in the morning without trying on 10 different outfits and having them all end up on the floor in a big heap!

Here's a tip that I learned: If you wear a tight slip with a skirt, it helps hide the bag. Jo, I hope you had a really fun night out with your friends, because after the day you've had, you deserve it!!

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/15/2007 9:04 PM (GMT -6)   
Thanks Peggy and Cecilia,

Peggy I am way ahead of you...I called my surgeon last week and he wants me to come back in and see him. WHAAA! Then he said, "No, Amey go see the GI specialist first and see if he knows of any tricks and then come back and see me." However, I do not want to see anybody. I want to be cured.

I am going to make an appt to see an kidney specialist. I have had a problem urinating since my first TC 8 years ago. I always assumed the problem was related to all of the laxatives I took because of my chronic constipation. However, even while I was in the hosptial for 15 days and only able to eat jello and drink my IV through my vains, I gained 15 pounds. I told the Dr I was not peeing and they gave me a mild water pill to help me pee. So, now I am at home and I still have to take that water pill daily so I can pee. My blood work showed that my kidneys were functioning properly in the hosptial but for some reason they are not converting the fluid I drink into pee so I have to workout to sweat out the water. I have not make an appt with a kidney specialist yet. I was kinda waiting to see if my body would balance out on its own...but I guess I have to get back to the Dr.

As far as being deficient, I hope I am not! I have been thinking the same thing. I have taken some magnesium and potassium over the past several days just to give myself a boost and then when I finally get off my butt and get in to see a Dr, I will have them run some labs.

Honestly, I am doing fine. This post just caught me at a time when I was frustrated and so I decided to rant. I am still better than I was 3 months ago. Thank you so much for your concern. It is truly touching to my heart!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/16/2007 1:19 PM (GMT -6)   
My night out was fun! I got to meet my friend's newly adopted baby girl, and cuddle with the little one a bit. It was wonderful. I'm glad I went. Made me want a baby NOW!!!

Good tip about the slip - time to shop!!!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 11/17/2007 7:32 PM (GMT -6)   
I have those days too, just today I was looking at people thinking "they don't know how lucky they are that they can wear regular jeans" I can't wear any of my jeans and the ones I try on all sit too low and the top of my bag hangs out! I have been wearing sweats everywhere I go and feel "frumpy" and unattractive. Just last week I had told a co-worker (who is a nurse by the way) about my surgery and all she could say to me was "EWWW YUCK"
so I have been struggling with feeling gross on top of it all!
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 11/17/2007 9:10 PM (GMT -6)   
sfgiantsjo- That sore or ulcer under your appliance could very well be the same skin problem I had many years ago. There is a very rare and painfull skin disorder that seems to somehow be connected to Crohns and Colitis. It's called "pyoderma gangrenosum." Look it up online and then go to a good dermatologist. Mine was so bad that it eventually covered the entire area of my skin under my appliance. I went to several doctors but they couldn't figure it out. I eventually had to take some time off from work because the pain became unbearable and I had a lot of problems keeping an appliance on. I eventually had to see a surgeon because relocating my stoma was now the only option for having a good seal on my appliance. However, the surgeon knew of a very good dermatologist and suggested I see her first. After seeing 4 or 5 doctors, she was the only one that knew of Pyoderma Gangrenosum. So, after having pyoderma gangrenosum for 3 long years, it was under control within a few days!!!! She started with Kenelog injections to the skin and also put me on a regiment of Cyclosporine.
 
Please take my advice. Go to a good dermatologist and mention Pyoderma Gangrenosum. I'll bet you that's what that ulcer is. And if it is "PG", it will not clear up on it's own.

Post Edited (vette guy) : 11/17/2007 8:29:03 PM (GMT-7)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/17/2007 10:03 PM (GMT -6)   
I have had Kenalog injections into areas of psoriasi that was under the wafer. And, you are corret, VG, it clared it up right away! They even make a topical Kenalog spray - looks like WD40 when you spray it. Strong but quick working for sure. I had forgotten all about that drug til you mentioned it.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/18/2007 9:18 AM (GMT -6)   
tbraz,
When it comes to wearing jeans, you can fold the top of the wafer over, so it doesn't show from the top, and wear a tank top tucked into the jeans and another top over it that is untucked. Trust me, nobody will notice anything, except how great you look!

sfgiantsjo,
I'm glad you had a great night out with your friends! :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/18/2007 10:54 PM (GMT -6)   
tbraz, i wear normal jeans all the time, you coudl do like cece said, or you can wear a shirt that's a little longer, except for the one time which it popped out of the top, which was stupidity on my part, it has never shown, watch me jinx myself there! but i wear low rise jeans, and some regular waisted jeans, the same ones i wore before. it hasn't been that long since your surgery right, it says august in your sig, so you might need some more time for your body to get back to normal.
sfgiantsjo i am glad you had a good time too!
 
 
snaej ni tfel eht no cip


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 11/19/2007 10:17 AM (GMT -6)   
I have an appoinment with my GI doc today, maybe I'll mention Kenalog to him! Thanks for the advice, folks. The darn sore is still there - it leaked through on Saturday again. (I went BOWLING!!!!)
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 11/19/2007 3:04 PM (GMT -6)   
I guess if the jeans are too low and too snug, it's causing the bag to balloon at the top. The waist of the jeans are pressing on the stoma and the top of the bag sits about 1-1 1/2" above the top of the jeans. It's ridiculous for me to say that jeans are too snug for me because I have lost so much weight, I can't fit into my normal size 5 jeans yet! I've even tried taping the top of the bag to my skin to keep it snug against my skin, but it still feels so uncomfortable. I hope that you're right and I just need more time. It's funny because I have been wearing tank tops under shirts to help control the top of the bag. If I had the chance to do it all over again, I would have fought with the ET nurse and made her put the stoma a little lower on my stomach!
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 11/19/2007 7:03 PM (GMT -6)   
Amey:
I too have been plagued with hydration issues. I see the kidney doctor (nephrologist?) regularly. My kidney function has tested to be normal yet I have had yhe dickens of a time staying hydrated. My urine output is very low (like yours) but my ileo output is very watery, unless, I have a high activity day (Physical therapy & gym). I take a liter a day of IV fluid ( I have a PICC line) and my bloodwork has been good. I also take a potassium supplement. This has helped me feel a lot better.

The kidney doc has been an excellent compliment to my other docs. Did you go to see one? Was he able to help you?

Sorry I can't add to the discussion re clothes. As a guy, pleated pants a size bigger have worked well for me.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/19/2007 8:43 PM (GMT -6)   
Thanks for your reply Richard. I have Potassium supplements and Magnesium as well. I have not scheduled an appt with a nepherologist. I have been hesitating to make an appt. I feel like every time I go to the Drs I always come out more confused than when I went in. Drs are like car mechanics! Every time you go see one, you always find that something else needs repairing and it's ganna cost you a mint to fix it! I thought my body would balance out after my surgery since I am still in recovery. But I think it is time that I make the needed appt to see the nepherology specialist. Boo Hoo!

Thank for your input. It is nice to know that I am not alone.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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