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TotesMagotes

HealingWell Forum
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Member Profile
Display Name
TotesMagotes
Profile Created
3/1/2013 6:34 PM
Last Seen
11/12/2020 8:06 PM
Total Posts
771

Last 50 Posts

update

Thanks for thinking of me countess! I’m doing ok. The last flex sig I had before I got too pregnant was right before Christmas. It showed the stubborn area had gone from a 2 inch ring of moderate...

2/16/2018 12:11 PM

Ulcerative Colitis
update

Countess that’s such great news!! Congrats. Btw I saw the gi you see and really like him. He’s my specialist at penn now. So thank you!! I agree with parts of everyone’s suggestions lol. If it were...

2/16/2018 8:32 AM

Ulcerative Colitis
Surgery a sucess

Awesome to hear! Get some rest!!...

1/10/2018 2:17 PM

Ulcerative Colitis
Thank you God. Surgery set for Tuesday

So happy for you 3time! Been following you through the last couple months. So happy your scheduled and almost on the other side of UC. I wish you nothing but a smooth surgery and healthy 2018. Keep...

1/5/2018 3:37 PM

Ulcerative Colitis
Elevated Liver Enzymes

Hopefully this makes you feel better. I’ve had uc for over 5 years. My liver enzymes fluctuate on occasion. I’m currently on 6 mp and remicade and get bloodwork every 3 months. Depending on...

11/23/2017 12:17 PM

Ulcerative Colitis
Proctitis Flare Up!

There are a bunch of rectal meds you could try and get prescribed. Usually for proctitis you use suppositories- Canasa or hydrocortisone suppositories. Then there’s cortifoam or uceris foam. Then...

11/17/2017 6:05 PM

Ulcerative Colitis
Felt better on Bactrim, doing research Shigella bacteria

It’s great to hear you’re feeling better. Hopefully the stool test reveals something. I’d do the same in your position!! Keep us posted :)...

11/17/2017 6:43 AM

Ulcerative Colitis
Success with remicade but had to move to different biologic?

I started another post but I think this may answer my question better... Has anyone had success with remicade but had to stop it for side effects or lingering inflammation and move on to another...

11/17/2017 5:20 AM

Ulcerative Colitis
Possibly leaving remicade...try entyvio or humira next?

@coffee- are you using rectals as the entyvio takes full effect? Also I’ve seen drs at Jefferson over the years. They have a great ibd team as well I saw DiMarino when I was first diagnosed. I think...

11/17/2017 5:16 AM

Ulcerative Colitis
Possibly leaving remicade...try entyvio or humira next?

Thanks for the input guys!! Casey- were you able to get off the cort enemas??...

11/16/2017 5:46 AM

Ulcerative Colitis
me again-getting cold feet

From what i have read the lymphoma increase is with males in their 20-30s on combo therapy. Again the odds are very low regardless if i remember correctly. Regarding 5 asas yes I think the goal is to...

11/15/2017 7:18 PM

Ulcerative Colitis
Possibly leaving remicade...try entyvio or humira next?

Hey countess. Yes my second opinion gi is Caroline kerner at penn. I’ve met with her once this summer and see her again next month. I meant to email you her name a couple weeks ago...so sorry I’m a...

11/15/2017 7:09 PM

Ulcerative Colitis
Brand new To UC- extreme flare- Remicade question?

I’m on remicade. I’ve been on it almost 3 years. Remicade in conjunction with 6 mp was a game changer for me. I still have bumps that I’m working thru (my uc is bizarre lol). But since starting the...

11/15/2017 6:14 PM

Ulcerative Colitis
Brand new To UC- extreme flare- Remicade question?

I agree with DB that it sounds like you still have c diff. What antibiotic did you use when they diagnosed it? I also agree with her view on starting remicade. Nothing is ever written in stone but...

11/15/2017 4:41 PM

Ulcerative Colitis
Possibly leaving remicade...try entyvio or humira next?

Hey John. I’m currently on 50 mg 6 mp. Been on it since last summer. My gi doesn’t think upping the dose will do much. I’m on the max for my weight but also when i was first diagnosed i tried 75 mg...

11/15/2017 4:34 PM

Ulcerative Colitis
Possibly leaving remicade...try entyvio or humira next?

Hi guys. Some know my story. I will have been on remicade for 3 years this February. I have had some bumps but things have been controlled since starting 6 mp last summer. However I have a patch of...

11/15/2017 4:22 PM

Ulcerative Colitis
me again-getting cold feet

Rip off the bandaid :) I started remicade when I was 30 weeks pregnant. I was terrified of going into preterm labor. I was in a terrible flare and stuck at 25 mg of pred. Within 6 weeks I was in...

11/15/2017 4:07 PM

Ulcerative Colitis
had my sig scope today/humira people feel free to give only positive vibes

Good luck countess. I understand your fears. I’ve been on remicade for almost 3 years and haven’t had any issues with infections or colds. I also had a c section and will have another in march with...

11/10/2017 7:21 AM

Ulcerative Colitis
blood is back ?about pred ? about biologics

I didn’t get that pain either until my last flare. I never had any pain before that. Well except when going with cramps tenemys etc. It’s not really about what the doctor wants. It’s about what you...

11/8/2017 11:29 AM

Ulcerative Colitis
Bactrim ,generic, they gave me for bla

Did they give you a list of the abx that will kill the specific bacteria? I get the list and send to my gi (if he didn’t do the test). This way we work together on which one will be the least evil. I...

11/8/2017 10:01 AM

Ulcerative Colitis
blood is back ?about pred ? about biologics

I agree with iPoop. Bumps are par for the course with a pred taper. Also the location of your inflammation is when stool can be on its way out so as you heal and stool rubs you may see some...

11/8/2017 9:57 AM

Ulcerative Colitis
Share something positive about UC

Do you want to start a new thread with this as the subject? Do you know the extent of your inflammation from when you were dx’ed via c scope? Uc starts from the rectum and spreads up. It heals down...

11/5/2017 7:47 PM

Ulcerative Colitis
Share something positive about UC

I have two little boys too :) Poop machines is pretty spot on!! Pooooop for days. Haha. IF you ever poop in public and that’s a big IF but try not to dwell on it. You sound like you’re responding to...

11/5/2017 5:56 PM

Ulcerative Colitis
Recommended Protein Powders for Ulcerative Colitis

I second iPoop and Mom. Natural proteins are best and on top I add in orgain protein shakes - the vegan version with pea protein. There’s no carageenan and a ton of whole food vitamins and nutrients....

11/5/2017 4:30 PM

Ulcerative Colitis
Share something positive about UC

Chikin- I didn’t mean to upset you in anyway. Some don’t have accidents. I had a really rough patch after my second baby where my meds weren’t helping at all. But I never had accidents before that...

11/5/2017 4:13 PM

Ulcerative Colitis
Started Xeljanz today

Maybe instead of prednisone you want to try a steroid enema? They go as far as rowasa but have some steroid power. They are much safer and much less side effects if any. I've been following your...

11/5/2017 1:36 PM

Ulcerative Colitis
Share something positive about UC

Empathy for others and realizing we all have issues behind closed doors. Patience. Patience. Patience. Living in the moment and appreciating the day. Like mom said - being grateful for the normal...

11/5/2017 1:29 PM

Ulcerative Colitis
update, hello

Congrats dikid!!!!!! It's sounds like you have so much awesome stuff going on. So glad you are feeling good :)...

10/30/2017 4:47 PM

Ulcerative Colitis
Apriso Side Effects

That's how I felt on asacol hd. It was bizarre and scary. It stopped after I ceased the med. I was fine in lialda. However now I seem to be intolerant to mesalamine meds. Hopefully you hear back from...

10/28/2017 6:18 AM

Ulcerative Colitis
Gym and flare association

The gym activity even for people who don't have ibd can cause gi stuff. My husband who has an iron stomach and could eat rocks marinated in gluten, pasta sauce and dairy gets "runners d" or poops...

10/27/2017 12:31 PM

Ulcerative Colitis
Hair Loss Humira

I lose my hair around 3 months post a bad flare that requires a pred taper. It usually lasts 3-6 months. It's horrible horrible horrible. I feel for you. On top of all the stuff we have to deal with...

10/23/2017 3:30 PM

Ulcerative Colitis
No pain, urgency, blood, or diarrhea!!!- Effective alternative to medicine

I live in NJ and have a MMJ card for UC. Unfortunately it doesn't have an impact on my inflammation but it does help a GREAT deal with other symptoms- nausea, cramps, headaches, anxiety, stress,...

10/23/2017 10:08 AM

Ulcerative Colitis
Abdominal tenderness

I know. It totally sucks when one thing stops and something else pops up. It's most likely a sign of healing. Things feel different as you heal. Talk with your gi too. And the gyn that did the...

10/21/2017 11:00 PM

Ulcerative Colitis
Abdominal tenderness

I'd highly suggest not stopping lialda especially if it's working for you. I started on lialda and eventually had to move up the med ladder. Uc can spread and increase in severity during the early...

10/21/2017 10:09 AM

Ulcerative Colitis
Halting a flare (techniques)

Steroid enemas (I can't handle rowasa anymore). I'm the same as you. Once the freight train starts there's no stopping it. So I hit my colon with rectals. I haven't been hospitalized in 3 years ;)...

10/21/2017 10:01 AM

Ulcerative Colitis
Colorful poop

Curcumin can make your stool look orange. And it may contribute the other colors you are seeing when mixed with regular stool type colors. My transit and colors are different than pre-uc as well. But...

10/19/2017 7:36 AM

Ulcerative Colitis
Upper endo and c-scope tomorrow

Good luck Quincy!!...

10/19/2017 7:33 AM

Ulcerative Colitis
Abdominal tenderness

iPoop and TTurds are right that's it's never linear and second the rowasa. You may need help healing the lower area. I've had 2 c sections and always think the same you do about the pain being my...

10/18/2017 11:03 AM

Ulcerative Colitis
Rowasa- the morning after...

Good to know on probiotics. I'll start taking them at night. Thank you. I have learned a decent amount and I'm grateful that I know my options without second guessing things right now. I am on...

10/16/2017 1:19 PM

Ulcerative Colitis
Rowasa- the morning after...

Thanks Quincy! I've got 2 months worth of the visbiome left and then was thinking of switching. So I will def try what you suggested. I've been taking them in the morning. Is bedtime better? I did...

10/15/2017 2:41 PM

Ulcerative Colitis
Rowasa- the morning after...

It's 1 pm where I am and I've still only gone once. Just ate lunch so waiting if that triggers anything. It's bizarre for sure Quincy!!!! I'm going to do a couple consecutive nights of the cort e and...

10/15/2017 10:16 AM

Ulcerative Colitis
Rowasa- the morning after...

I was just scoped 9 days ago. I will go again in mid November. Sooner if things don't calm down. I've done cortifoam before but it doesn't reach the area. Cort enemas are pretty much all I have left...

10/15/2017 4:39 AM

Ulcerative Colitis
Rowasa- the morning after...

This makes me so sad. I feel like I am succumbing to being steroid dependent...I guess I should be grateful that its only cort enemas and not pred...and hopefully stays that way. Thanks Q. Yes I am...

10/14/2017 11:06 AM

Ulcerative Colitis
Rowasa- the morning after...

Another night of rowasa and another morning with terrible symptoms. Retained it all night. Woke up to cramping and d and blood and frequency. My first bm was basically the enema liquid. Yesterday I...

10/14/2017 9:42 AM

Ulcerative Colitis
Rowasa- the morning after...

Thanks Connor. I'm going to swap a couple more nights. I felt so much better today after a cort enema. I think I just don't mix with 5asa anymore. It sucks. I get flexed in November. See another gi...

10/13/2017 11:20 AM

Ulcerative Colitis
Rowasa- the morning after...

Thanks for the tips. I'll give the pillow barricade a try :) I put the enema in about an hour before sleep time. So I put it in and lay on my left side for at least an hour. I do toss and turn so I...

10/13/2017 7:50 AM

Ulcerative Colitis
Rowasa- the morning after...

Thanks John. I feel the same. It's such a tough decision. And an awful spot to be in. I hate steroids if any kind. I'm making an appt with a gi at upenn that I met with once before. Hopefully she has...

10/13/2017 7:10 AM

Ulcerative Colitis
Rowasa- the morning after...

Yea that's exactly what my gi means by mild. He doesn't think it's too bad (right now) because it's cort enemas. It was biopsied during my colonoscopy in January 2016 which is 6 months after it...

10/13/2017 4:16 AM

Ulcerative Colitis
Rowasa- the morning after...

Does it sound like a med refractory, steroid dependent type of situation? My gi is making me feel crazy by thinking it is....

10/12/2017 3:49 PM

Ulcerative Colitis
Rowasa- the morning after...

Quincy - I really think I have issues with the 5ASA which is why I stopped it 2 years ago. I rarely ever have diarrhea (maybe twice in 2 years) because of the location of the patch of inflammation....

10/12/2017 11:51 AM

Ulcerative Colitis



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