HealingWell
Search Close Search
☰

**bananagirl**

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2 34 5 6
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/31/2013 12:27 AM (GMT 0)
Thanks for the update, Jennie. Hang in there, Joanna ! We are all praying for you !

-Robert
Posted 7/31/2013 12:59 AM (GMT 0)
bananagirl,

Sending LOADS of healthy healing vibes your way.  We'll be thinking of you and hoping all goes really well.  From what others have said about surgery, it'll be a lot easier afterwards and after what you've already been through, you'll be so glad!  Be well.

zucchini :)

Posted 7/31/2013 9:04 AM (GMT 0)
Thinking of you Bananagirl! You will get through this and come out fighting (and healthier!) on the other side! Best wishes! x
Posted 7/31/2013 11:51 AM (GMT 0)
Hey everyone! Its me! U are all so amazing. I cried reading ur kind words to me.

Wanted to update u all. On saturday, i was getting bad cramps and pains. I had been flaring already but usually 3-4 bms a day with cramping not like constant pain or anything. I went to the er and hey did a ct scan and i drank that stuff. I got some strong painkiller called diladid or something. Scan showed whole colon was inflamed. The doctors admitted me and wanted to start iv steroids. Well when we called my gastro to let him know, he came to the hospital to talk with me. He said he thinks i had a perforation that repaired itself and thats why it didnt show up on the scan. He is worried of it happening again though so ive been consulting with surgery team nonstop. The internal medicine team said it would be good to try high doses of iv steroids and then do another scan to see if they can see anything better. But i have consulted with the stoma nurse and have stoma spot marked and have been wearing a bag since last night to practice just in case the steroids dont help. We are giving it 24 hrs to see improvement and if not, then i will do a prep and get surgery.

So thats basically where im at right now. Still very scared. Since i had no fever or vomiting, my gastro is kind of the only one to say its a perforation. The other doctors here say there would have been air in the ct scan picture and a high wbc. I dont know who to believe so im confused! Has anyone here had a perforation?

Anyway, whatever happens, i feel like im in good hands either way. The surgeons are great here. I have been filling my bag with water and emptying it. I had a major leak walking down the hall last night. Would really suck if it was poop! The bags im wearing are coloplast so maybe they just suck.
Posted 7/31/2013 12:30 PM (GMT 0)
Hey Banana-
I sure hope the steroids work for you. I hope you are feeling a bit better. I have been thinking about you and praying for your speedy recovery. Keep us posted. Thinking about you.
Posted 7/31/2013 12:51 PM (GMT 0)
Good to hear from you!
Posted 7/31/2013 12:59 PM (GMT 0)
Hope everything turns out okay, banana girl.  I will pray that you return to good health.
Posted 7/31/2013 1:13 PM (GMT 0)
Hey, smart thinking to have a "practice" bag. Sounds like you are in good hands and have help making your decision. Take care, and it's good to hear from you!!
Posted 7/31/2013 1:24 PM (GMT 0)
Good to hear from you! Have had you in my mind.
Posted 7/31/2013 1:49 PM (GMT 0)
yay ! you still have that lovely colon ! wasn't liking the sound of Joanna Bagana ;-)

glad you're doing ok -
Posted 7/31/2013 1:50 PM (GMT 0)
I'm feeling a little better for you! I hope you heal up and they don't have to do surgery, if you don't want that. I think it's so nice and awesome (as it could be) to practice and you're not waking up to not knowing what you're in for. Sounds like you're in good hands at you hospital.

Thanks for the update, let us know how you are doing when you can!

Sending hugs and prayers to you!

Posted 7/31/2013 2:33 PM (GMT 0)
JoAnna,

Thank you for the update, what ever happens please know that it is for the best and it is great that you are comfortable with the surgery team and the hospital that is the most important thing besides your family being there to support you.

If you do have to get surgery before the weekend then request a Pain Management Plan for over the weekend; sometimes doctors and surgeons are MIA over the weekends and if you are in pain then you might not get meds that you need. I saw that happen to my roommate when I was in the hospital my last time, he had surgery on Friday and suffered all weekend long because the surgeon was away for the weekend and staff who was covering didn't want to increase his dosage because they weren't the surgeon....I would have strangled the surgeon on Monday when he came back.

I don't think anyone mentioned this yet but surgery is a cure for C.diff, no colon then no C.diff or Vanco anymore. I'm probably going for surgery in the next couple of months, "IF" you do have surgery maybe you can give me some advice from your experience.

Post Edited (ks1905) : 7/31/2013 11:18:39 PM (GMT-6)

Posted 7/31/2013 3:24 PM (GMT 0)
So great to hear from you, JoAnna!! You sound like you are handling things pretty darn well and getting prepared for whatever outcome you may end up with. It is great that you are getting to wear a practice bag too! I tried Coloplast for a while, and while there were some features I really liked about them, I didn't end up choosing them as my permanent bag option. If you have any questions as far as all that goes, don't hesitate to ask....Just in case. Hang in there and rest as much as you can!!

KS1905~ Just a side note, but surgery is not actually a cure for C.diff. I had C.diff about a month before my surgery and asked my GI and surgeon if the surgery would eliminate the chance I could ever get it again. They both said the chances are MUCH smaller, but you can in fact get C.diff in your small intestine, it just doesn't happen very often.
Posted 7/31/2013 3:42 PM (GMT 0)
So glad it appears that nothing perforated and the surgery can be well planned out if that's the course instead of an emergency. Be well. We're all rooting for you.
Posted 7/31/2013 4:49 PM (GMT 0)
Hang in the joanna! Great thinking with the practice bag!! Hope you get some answers soon! Not knowing gives you too many options to think about !! Im thinking of you! Continue to be strong!!
Posted 7/31/2013 5:44 PM (GMT 0)
Joanna, you're always such an inspiration -- you see the humor and light side of everything and you have such a big heart. We're all reflecting back to you the love and comfort you have offered us, and I'm holding you in my heart and sending lots of positive energy for the best possible outcome. One thing I know about you is that whatever happens, you'll find the positive in it. Take good care, and let others take care of you, and wrap yourself in the warmth of the love that's being sent to you.

xxoo

Janey
Posted 7/31/2013 6:14 PM (GMT 0)
I think ur prayers are helping! Ive had three doses of steroids and so far so good. The doctors are shocked at how im responding to them but im on higher amounts than i was last time.

Im still nervous about what happens after but have no problems anymore about surgery if i cant get off prednisone and use imuran. The bags really arent a big deal at all. I can hardly feel that im wearing them. Ive been switching between a two piece and one piece. I honestly like both but think the two piece would be better so i could change the bag every two days and the wafer maybe every three to four days? Not sure but thats what the ostomy nurse said is the average time. I figure that uc is so hard to live with so if i can put up with that then a bag is just gravy! My stoma spot is a little high up but since they expect me to gain some weight, they said it could droop so making it lower now might not end up so good.

Ive been on bootstrap's blog all day and night reading and she is super informative! So glad u made that girl. Its been a huge help for me, especially the tip about using baby wipes after u empty the bag. Never wouldve thought of that. Also love those eakin seals because i am so prone to rashes and those seem to help some people.

If u ever think u might need surgery or even have something more than mild uc, id 100% recommend getting a sample bag from ur gi and wearing it around. It kind of makes u realize that a bag is not a pain even if u have a little bugger poking out of u. i mean, i could feel different after surgery, but i think its definitely doable. i was so shocked when i ended up in the hospital because my symptoms hadnt been that bad and my nutrition/bloodwork has been great. Just goes to show u that uc can rear its head at anytime and totally knock u on ur butt.
Posted 7/31/2013 6:19 PM (GMT 0)
Joanna, your attitude is amazing!

Are you a candidate for a j-pouch?
Posted 7/31/2013 6:23 PM (GMT 0)
Hi Joanna...happy to hear that you are improving on the higher steroid dosage. I hope you do get out of this crisis.

Getting prepared for surgery in case they don't help is a great idea...especially wearing the bag and emptying it, etc.

It sounds as though you ARE in good hands, thank you for the update.

Sending healing thoughts your way.
qxx
Posted 7/31/2013 7:59 PM (GMT 0)
Hey Joanna, sorry to be so brief but I'm posting from my phone as I just had my takedown this morning... I would recommend removing the practice bag, it isn't recommended to wear one close to surgery at the stoma location because it can irritate your skin and made it harder to heal post op.

Ps, a bag full of pure water is much more likely to leak than a real bag! And also much more of a pain. So what will be will be but sounds like if necessary you'll be golden wink
Posted 7/31/2013 8:44 PM (GMT 0)
I think your doctor has been trying to encourage you to surgery for awhile. So his assessment may be a bit of a.... dont know how to put it... possibility.... whereas the folks there do seem to be presenting very correct information that if you had a perforation you would likely have an elevated wbc and air or fluid in your adbominal cavity.

you have fought SO HARD tho and had so much pain and done so much.. so this isnt to say you shouldnt explore the surgery. Im only commenting on the perforation information.

Best of luck to you no matter what you decide. Im praying for you.
Posted 7/31/2013 8:46 PM (GMT 0)
Joanna,I am so glad you are feeling better! I will continue the prayers!!

 If you are responding well and  decide not to have surgery right now and want to try something else, I will tell you what has recently made a big difference in my disease. I was the biggest skeptic about Align but it made a liar out of me! I am taking Align probiotic in the morning and Primal Defense Ultra at night. I haven't felt this good since before I was diagnosed. I have been taking them like this for about 6 -7 weeks. In the beginning, it took a few weeks of more gas, bloating but after that it was an improvement every day. Also in the beginning, I skipped breakfast and lunch for the first day or two day or two to let my colon calm down but always ate a low carb dinner. I think it may be the combo of two different probiotics that may be helping me but who knows? Anyway, I just wanted to throw that out there, just in case you decide not to get the surgery right now. Much love you to you! Keep us posted on what you decide!!

Posted 7/31/2013 9:27 PM (GMT 0)
Hey Joanna,

Really pleased to hear that you're feeling a bit better! Hope you continue to improve and manage to get out of that hospital soon!

Joanna xxx
Posted 7/31/2013 10:09 PM (GMT 0)
Get well soon sista.
Posted 7/31/2013 10:32 PM (GMT 0)
I'm glad you're feeling better. I hope it continues.
✚ New Topic ✚ Reply
123456