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Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 8/29/2017 9:53 AM (GMT -7)   
Hey Clo, Haven't noticed any posts from you within the last few days. I know you're in Texas but not sure which part. Did you get affected by the storm? If so, I hope you are safe and sound!

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 8/29/2017 8:15 PM (GMT -7)   
Hey Lab!

Thanks for thinking of me. We were having anything and everything moved out of Harvey's path.

In 2012 we bought a lot one block from the beach in Port Aransas so we could build and retire there. Lol....wow.... Then Crohns kicked in so we found a little place up by Dallas Baylor to use until I got better....thinking we would sell later....... and now this..

I sure am glad I have a colostomy- otherwise I would be sitting on the toilet every five minutes. Instead I am just popping Zophran and praying....

But I am grateful.....and so very very thankful. My friend who also lives in Port A. lost everything and she had forgotten to pay her insurance. She was kind enough to check our place and they said there is nominal damage. They are now staying in our place. No water or electricity or sewer....but a dry place to lay her head.

Some of the houses on our street were destroyed by the storm surge....others by the winds... Right now it looks like we may have gotten lucky. Although our insurance premium will go up, property value down and the chances of selling the Port A property now are looking kind of bleak...life's still good.

We are safe and we are together. The rest is just one moment at a time.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 8/30/2017 1:06 PM (GMT -7)   
Wow, I'm glad you are okay! What a horrible horrible catastrophe

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 8/31/2017 7:25 AM (GMT -7)   
Hi Clo,

Just wanted to send my best wishes to you and your family. It's good of you to open up your home to others. I hope you all remain safe and protected.

xo
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 9/4/2017 6:53 PM (GMT -7)   
Thinking of you Clo! My husband worked in Port Aurthur last year before he took this job and we moved to Louisiana--we are only 4 hours away from you! Our area flooded last year, but we were lucky and ours didn't flood...instead it caught fire! Lol. We still haven't been able to move back in (it took for-ev-er to find and hire contractors *beware* of crooked contractors, probably 75% of them will leave you worse off either by straight-up stealing or negligence) a lot of people are still working on their homes or living in FEMA trailers, but it doesn't look sad anymore. Icm so sorry you're going through this! I swear moving to Louisiana, not knowing a soul, right after our house caught fire, then the floods--this insanity andvthe stress has everything to do with this flare I'm in. It's heartbreaking. XOXO
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 9/7/2017 6:55 AM (GMT -7)   
Hi Clo,
Are you ok?

Recovery very slow & painful. Penrose drain gets caught between butt cheeks & im sure you can here my screams down to you!!
Heard from fistula repair clinic in LA, but will be looking at Cleveland clinic. I'm terrified of yet another abscess

Write more later.

Be safe
Xo

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 9/8/2017 10:42 PM (GMT -7)   
Hey guys...

Well have been having issues. I knew I was heat intolerant but now when it gets over 85 and I go outside...even to walk to the car....I vomit. As long as I stay inside I am able to control it with Zophran. I have not been able to sleep at night cause I feel hot even with the thermostat turned down to 73. So....when we go to the store we park the car right by the front door. I walk 5 feet to the car and then dry heave for 10 minutes or so.. Then I take another Zophran and it turns me into a zombie. Then there is the going in to the stores.....lol... New experiences....yea!!!

And I broke out in spots! I was scared they were PG but they are on my upper thighs. They look like little pimples, develop a head and then they cave in and have this discharge/mucus stuff in the center... They look like fire ant bites but I have not been outside. So I started putting hydrogen peroxide on them and then alcohol to dry them out and then....I had to use the old left over dreaded steroid cream. Now they have hard scabs on them and are crusted over....AND...my uveitis is back in both freaking eyes!! So used my old left over eye drops for that too.

Thank Goodness my infusion is on Tuesday!!!

We had to go to the pharmacy to pick up my meds-I had to sign for them-and I about cleared the building when I hobbled in with my arthretic knees, shuffle shuffle foot slaps down, gag gag, deap breath, red eyes tear up and it rolls down my cheeks, sniffle cough, gag..."I'm here to pick up my prescriptions" and they are running out of the back of the building or frantically trying to put on those little masks.......while I am trying not to laugh so I won't gag.....and I realize my shorts have ridden up and you can see some of those spots... OMG...so then I started laughing and had to yank the green hospital puke bag out of my giant purse..... But their faces......priceless!!! And our pharmacist-who is a personal friend-is running around with his hands out saying she's not contagious she's immune compromised....and the other half of his employees were heading for the back room and breaking out the Lysol. It was a comedy for sure. Next time I am using the drive thru even if it is backed up!!

But Remicade is Tuesday. Methotrexate was today so that will help too.... So life is good....take the hiccups in stride.

Clo

UB,

I am so sorry you are going thru this!! Maybe the Mayo Clinic can figure out why you are having recurring issues? You are in my thoughts and prayers.

Sorry--Zophran and methotrexate kicking in. Will check back later.

Hang in there!!-

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 9/9/2017 2:23 PM (GMT -7)   
Oh how awful!! I wanted to laugh and cry at the same time!!
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 9/12/2017 10:03 AM (GMT -7)   
Hey Clo, How horrendous!! Im so sorry that you are having such a terrible time. It is better to laugh than to cry though! I hope our infusion today helps!

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 9/12/2017 4:43 PM (GMT -7)   
Left my house at 530 am to get to rummy at 815. She prescribed a walker with wheels and a seat...advised me to make apt. for physical therapy, lose weight (thanks prednisone!) and continue to take turmeric and omega oil. If those things don't help then its shots in knees and plaqenal??? Spelling is wrong....sorry guys I was still.half asleep. (I can't sleep the night before an infusion...too much anxiety.) Anyone have experience with those things?

My blood pressure was sky high....probably from road rage....AND a little two seater drove by a parking space....I put on my blinker and waited for the guy in the space to back up...and that little two seater backed up half a block while I was waiting for Grandma to back out.....aaaaaagh....and stole my spot!!!parked right in the middle of two spaces!!!

Then it was on to my 4 hour infusion. The benedryl really messes me up....and that was after the new nurse "fished" to access my port for 10 minutes.... But finally the magic elexor was flowing into my veins....and I got restless leg syndrome...and then it was like I was dizzy, and then.....cramps in my lower colon by my bikini line. I think it was my left in sigmoid/rectum.... Whaaaaaat?

Am now at home. Brain dead, loopy, vocab gone and tired but can't sleep. Cramping...knock on wood... is getting better. And get this....my uveitis....bump and redness gone by the Time infusion ended. It was way weird......I could feel my eyeball pressure deflating....like a party balloon. WOW!!! It's amazing what we get to experience because of Crohns...lol

Gotta go....still loopy...

Will check in later.

Clo

I try to tell you all about things that happen that I think is just funny. If we don't laugh we sometimes take the little things too serious.
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 9/12/2017 9:42 PM (GMT -7)   
ah geez what a rough day!
My experience with physical therapy is its great if you can keep up with it and you have the right therapists. I've had some good ones and it does usually help. (I just had issues with consistency since its hard to keep up with that along with all the other things going on in my life) Its worth trying. it also used to help some of my body aches temporarily. That may help with the weight loss too. The Plaquenil I've been on since last December. Im not sure if its working or not but so far this past eight weeks between Remicade infusions I had the least joint pain since starting it. Its also worth trying since its relatively low risk.

As for the shots in the knee I had last December...... Its worth it but let me warn you it falls near or at the top of "Most Uncomfortable Procedure" list for me. Maybe if I had been prepared for it to hurt it wouldn't have been as bad. They told me I would feel a little pressure but no pain since they put some numbing spray on it. The nurse just kept yelling at me to breath but it was just nasty painful. It was the only thing I've had trouble holding still for. it wasn't long but long enough.Sorry it this sounds gruesome, I hope it doesn't scare you away from it, you may not have the same experience, the needle being there felt like someone had their finger or hand inside my knee. Afterwards the PA who did the procedure was like "So what does it feel like cause I tell patients its going to be a little pressure but Ive never actually experienced it myself so I don't know if thats accurate" -_- the pain was intense for several days to week or so after the shot, it actually gets worse before better. However once it is gone, its all gone. they don't say how long it will work because everyone is different but since I went last December I'd say I was good until about a month or two ago. Now I will get occasional pain but nothing like what I had pre-shot so in the end it was definitely worth it.

Glad the remicade helped! I get the restless leg issues from the benadryl too. I also end up passed out with my mouth gaping open and drool running down my face, which is frequently when my GI walks over to talk to me in my dazed state. Always makes me feel great about myself lolz. I've got my life juice coming this week too. Cheers!
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