HealingWell
Search Close Search
☰

Dealing with Pyoderma Gangrenosum! PART II

Support Forums
>
Crohn's Disease
✚ New Topic locked
1 2 3 4 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/11/2009 6:55 PM (GMT 0)
Hey again blush

Has anyone had any luck in sitting in the sun for a few minutes a day?  I'm going to try that now...we don't get much in the Seattle

area. It has been beautiful the past couple of weeks though.

Mark-I think I get it now.  I just googled it.  You also mentioned compression stockings.  Do you suffer with DVTs also.  I have had 3 over the last few years and my MD said there  is a link.  Are we having fun yet?!  Congrats on your many grandchildren!!! Wow...how special that you were there for the delivery of two of them. :-) :-)   Makes you know there is a God in heaven! I hope they are close by so you get to enjoy them often.

Penny- I got you a present! You are going to laugh.  It's called Smooth Away.  It is a mitt you put on your hand and gently rub the hair off your legs.  It is soft as can be and will not abraid you at all.  One of my friends swears by it! I'll bring it to lunch...if you haven't started braiding by then!HA

Feel Good

Peace--Willow

Posted 7/11/2009 9:43 PM (GMT 0)

 Hi Willow..I have been checked for DVT's but so far none  have been found,I wear the compression stockings mainly for circulation problems in my legs,I have a condition called "Chronic Venous Insuffiency".basically means blood fow going down into lower extremities is fine,but has problems coming back up.My 2 granddaughters are very special to me,and they know it,one just turned 17 and the other is 11.Will post more later.

 (((Hugs to all)))

 Mark

Posted 7/11/2009 10:56 PM (GMT 0)
OH MY GOODNESS A PRESENT ALL FOR ME?!??! Is it my birthday? (lord I hope not this year is the big 40) hahaha ...Awww Willow that was so very thoughtful of you :) Thanks so much for thinking of me! <3 (that's a sideways heart by the way if noone knows! hehe)

Wow 12 grandchildren for Grandma and Mark, you both must be broke! HAHAHA My mother has 4 and she is broke because of them, the grandchildren know if all else fails, run to grandma she will ALWAYS pull through for them! HAHA She has them all so very spoiled that its drives me and my brother crazy we both have 2 children and we both are single parents, we are actually very blessed to have such a loving mother and father who has helped us both so much with raising our children, as all knows children are not cheap by any means. Actually, we just got another generation in the family, my niece who is 21 just had her first baby and she lives a few doors down from my mother in my old house in Texas, my mom is absolutely loving this great granddaughter of hers, Im so happy that my niece decided to move from Oklahoma when the baby was born to raise it in our home town. I can tell this great granddaughter is gonna be very spoiled by my mom. But ya know whatever makes her happy :)

Well, I still feel the fatigue and upset stomach...yes I have eaten before the medication and I do not know why Im just so sleepy. I have read alot about this medication, Im not so thrilled with the side effects but to honest, I will take them over having this horrible painful wounds anyday! I'm just really sick of the wounds on my body. I want them to just go away :( Ive had them almost a year, I know that I cut my leg the day I moved last year which was Aug 15th so my year is coming up. I'm really burned out on them. Still no desire to eat at all :( I was craving Jack in the Box lastnight at 12:30am so I went, so funny I get home and can hardly get any of it down, this seems to be common with me lately too, I will crave something cook it, it smells so good when Im cooking it, I make a plate, sit down and can hardly get it down once I start eating it! I shouldnt complain I do need to lose weight Im a cute lil fatty, but I also know losing weight this way is never the right way.


Much Love <3
Penny
Posted 7/11/2009 11:01 PM (GMT 0)
Ive noticed again this thread like the first one is getting pretty huge as far as the posts we have had on it, I would assume the mods will be asking us to start a part III soon :)

<3
Penny
Posted 7/12/2009 2:16 AM (GMT 0)
smilewinkgrin  Hi Everyone -  One common theme I've noticed on this "thread" is that even though we endure this painful and life changing disease, we maintain our senses of humor.  Willow, you crack me up, and you too Penny.  The bit about braiding the hair - I can relate.  With my wound being on my abdomen between my navel and pubic area, it hurt like crazy to bend over to shave...so I let it go.  But once the warm weather came, that wasn't really an option.  I asked my daughter if she would shave them and let's just say she wasn't really thrilled with that idea (she's ADHD so I probably would have been cut to pieces with her rushing to get done).  So, hairy legs it is....but my dear sweet mother, age 75, got down on her hands and knees and gave me a mini-pedicure for summer sandals.  So, I am humbled....and that's always a good thing too.  It has been a journey for us, hasn't it.  I can remember before I got a firm diagnosis and treatment and a doctor who knew what the heck he was doing, just echoing what you've all said:  I just want to have these darn things gone!  I felt so icky and unclean.  Like a leper.  I even asked the infectious disease doc I was seeing if I had leprosy and he said he wasn't ruling it out - he has seen patients with it.  But I don't want to go on about sickness, illness, wounds, etc., I want to give hope.  I went back to work this week and although I am tired, I actually wore a pair of pants with a zipper in the front (haven't done that in ages - had to buy pants with flat front due to the location of the main wound)...anyway, God bless you all and keep the faith and keep the giggles going.....it's contagious....Warmly, Miss Camper wink
Posted 7/12/2009 2:30 AM (GMT 0)
Hey--

I sat in the sun with my wounds fully exposed for about 15 glorious minutes!  I love being out in the sun!  We moved here from GA and I so miss the extended summers.  I swam probably 300 days a year outside! (yes, the pool was heated!)  I'm still curious if sun and water might help.  Mark, you mentioned whirlpool therapy helping as well as sitting at the oceans' edge.  What do you think?  It is probably good that we were only stationed there for two years or I would have looked like a leather handbag real soon!Ha!  I'm glad you don't suffer from DVTs. :-)   They are no walk in the park.  I feel fortunate that I suffered no PEs.  I am having a venous study done soon.  I already know the answer, though:(  I have had problems for many years.  Sounds like you have had similar experiences:(  Sorry!!!  I'm glad to hear that you spoil your granddaughters shamelessly!  Good on you!!!  Girls today so need that kind of love and attention from the strong men in their lives.  They will pick men just like the strongest most loving men that influenced them!!! Well done!

Penny-- Do you have an underlying digestive D/O?  Do you think you may have caught a bug?  Is anyone in your house sick?  I'm so sorry to hear that you still feel ill:(  Is someone there to help you?  How old are your kids?  Do they help out?  Is your mom with you?  If you stop eating, the meds you currently take will tear your digestive system apart.  You are right, this is not a good weight loss system.  Try broth and unbuttered toast with tea for starters. So sorry!  Remember... I can help...you have my # just call!  I will keep you in my prayers.

Happy dreams redface

Peace---Willow

Posted 7/12/2009 5:18 AM (GMT 0)
Hello My friends,

Willow, as of right now I have no underlying diseases. Ive been tested for many, hell theres so many I have no idea if I have been tested for all but I believe all the blood work thats been done on me lately would come up with some crazy numbers if we missed anything. I did the entire wonderful GI stuff, which isnt fun by any means. Noone else in the house is sick. Amber helps alot thats my 17 almost 18 yr old daughter, my Son Austin is 16. My mom is not with me, but wants to be badly. She is currently in my little home town in Texas and is waiting on word from me if my company doesnt hold my job I will be moving back home. I have never just stopped eating completely, I wont allow it :) I will force down if I have to :)

I seem to be feeling a tad better, now my sleep is all messed up its 10pm and to me it feels like its 2pm. Aww Willow thanks for the offer on helping :) thats really kind of you! And, thanks so much for the prayers, can never get enough of those can we? :)

MissCamper, you crack me up too....Ya know I believe that laughter is so very good for the soul w/out it life would be so dull and boring to me. And I know what you mean too about feeling so yucky with them, I do totally relate to that one. I hate when they remove my wrappings at the wound clinic and say "Ohhhhhh they look so good" they do it every week, and everytime I say....please dont say that ..there is NOTHING about them that look good to me >.> you can say wow they look smaller in size, but these wounds are NEVER going to "look good" to me until I see some actual healing ...lol they would say that when they were growing an inch per week too, it would just annoy me to no end and back. I know they are trying to lift spirits, but what would lift my spirit is to know that they are taking the time to learn about PG ...instead of just "assuming" this is why I will no longer be allowing them to scrap my wounds. :)

I will be checking in later!
<3
Penny
Posted 7/12/2009 11:24 AM (GMT 0)

Penny......Thanks for the pain medicine information. I might just ask about the patch.

Glad you got some sleep, it is hard to deal with everything, without losing sleep as well.

Hope you enjoy a nice Sunday.

Jan

Posted 7/12/2009 1:41 PM (GMT 0)
I have been trying to find any of the pictures that were posted in the past of their PG wounds, but no success! Can anyone help me to find them, thanks.

Jan
Posted 7/12/2009 6:20 PM (GMT 0)

 Hello everyone...Willow I went through whirlpool therapy back in the 70's when I was having the initial outbreaks while I was stationed in Germany,haven't done it since.I believe the the wave action whether by whirlpool or just sitting along the shore at the beach helps with circulation and also is relaxing. Iv'e been in swimming pools,and after awhile I notice my feet get red and become itchy, I have wondered if the chlorine in pool water has anything to do with it.I live quite a ways from the beach,in fact last time was down there was in 2007.The chronic venous insuffiency that also can cause "venous stasis ulcers" is one of those conditions that often mimics PG,so if say providers just treat the ulcers as venous stasis instead of 'digging a little deeper"to the real problem in the autoimmune system then healing time could be shortened.I have found doctors treat what they see on the surface,rather than looking for underlying problems.That is part of the unknown of PG,it is so rare,even more experienced providers will miss it.When I had the outbreaks initally in the 70's,the military doctor right away referred me to an Internal Medicine doctor,and together came up with diagnosis of PG.Being dark complected the Internal Medicine doctor I recall asked me "if I had ever been tested for Addison's Disease?",told him no and after the testing(which was negative)they arrived at the diagnosis of PG.I have a good PCP now through the V.A.,if I asked for a referral to Internal Medicine,usually not a problem.I have an appointment with my PCP the 29th,and am already working on some questions to ask him.It's no longer a matter of "if" there is a reoccurence but "when" the next time comes.My grandaughters are very special to me(they are the only ones who live close).Trisha,the oldest(now 17)her daddy was killed in a car accident 6 months before she was born,he was stationed with the Army in Germany at the time of his death.Well enough for now will post more later...

Posted 7/12/2009 11:15 PM (GMT 0)
This thread has become TOO long. Will the next person that wishes to post to it please start a new thread. You can use the same title and add Part III if you wish. Thank you for your cooperation.
Ides
Posted 7/13/2009 12:27 AM (GMT 0)

 Well I guess you all are ready for PART III..who would have thought we'd get to this point?.Must be some real chatter boxes..that's o.k. a dirty job,but somebody has to do it.What say we keep it going????.

Posted 7/13/2009 2:24 AM (GMT 0)
Ok guys I started a new thread for us :) since this one is too big https://www.healingwell.com/community/default.aspx?f=17&m=1531009 Part III :)
Posted 7/13/2009 6:16 AM (GMT 0)
Well here I am its 215 in the morning and I cant sleep due to the constant stabbing pain in my ulcer!! God I hate PG and this ulcer I have is the size of a half dollar, I am going to the doctor on tue and waiting for the insurance comp to approve remicade so I have a ques does anyone elses ulcer smell horrible my other one didnt that is healed now, This one is much bigger I clean it daily its just soooo gross!!!
Posted 7/13/2009 1:17 PM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=17&m=1531009


Sarah we had to start a new thread this one is too big to post on anymore please go to this other thread :) I answered your questions there dear <3



Love,

Penny
✚ New Topic locked
12345