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Bacon Girl

HealingWell Forum
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Member Profile
Display Name
Bacon Girl
Profile Created
5/15/2011 2:35 PM
Last Seen
Yesterday 4:04 PM
Total Posts
5666

Last 50 Posts

Calprotectin over 7000!!!

Damn! It seems so weird to have mild symptoms but such a high fecal calprotectin. I think during the height of my flare, mine was 1000 and I was crapping 30x a day, all bloody. I was relying on...

Yesterday 12:16 PM

Ulcerative Colitis
Late night snack help. (Low sugar. Low dairy)

I always eat before bed and most nights it is rice cakes, meat sticks, cereal or chocolate. These typically dont make me nauseous so these are my safe foods. My bowel movements have no correlation to...

12/4/2023 8:31 AM

Ulcerative Colitis
STELARA Headaches Nausea, get better?

Hey girl. I have never taken Stelara but hope things improve. You have had a really hard year. How are your Uc symptoms? Did they get better after the starting dose? Side note but after I had covid,...

11/30/2023 4:14 AM

Ulcerative Colitis
Got a question about flares?

Any inflammation means flaring which is always bad. Symptoms also happen to most of us, too, to let us know there is inflammation like bleeding, pain and urgency. The medicine just isn’t working...

11/28/2023 1:40 PM

Ulcerative Colitis
Ketones in urine?

Every time I flare this happens. Totally normal from the weight loss. I tend to lose my period, too....

11/28/2023 1:35 PM

Ulcerative Colitis
Met with new GI

I hope you stumbled upon a good one! That can be a rarity in some towns. What is it about stool tests you don't like? I honestly like doing them to check on inflammation levels haha I have to do them...

11/26/2023 11:26 AM

Ulcerative Colitis
Rinvoq after loading phase.

Hey Isaac What symptoms do you have? Are you on prednisone, too? Rinvoq was very slow to work for me compared to Simponi and Remicade so you may just need more time. It definitely took me the 8 weeks...

11/22/2023 3:05 AM

Ulcerative Colitis
Antibiotics and probiotics?

I always take Culturelle. I have done so much research over the years and Culturelle and Florastor can survive antibiotics while you are on them but the other strains die so it is a waste of money....

11/2/2023 5:49 AM

Ulcerative Colitis
IBD in family members

That is lot of siblings Clo but how fun it must be to have so many life long friends (if you guys still talk). My mom is one of five and close with all of her siblings. I just have my sister and she...

10/23/2023 4:10 AM

Ulcerative Colitis
STELARA nausea weakness

Hey girl. Was thinking about you and wanted to see if are you feeling any better? Did the reaction die down?...

10/22/2023 5:08 AM

Ulcerative Colitis
Do you stop/ continue Rinvoq while having COVID?

D. Brasco you make a good point about covid weakening your immune system. I had been battling MRSA from Sept 2019-Feb 2020 and finally was feeling better but got Covid in March 2020. MRSA came back...

10/15/2023 5:22 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Barnsbury I hope the change to Stelara is a good one and your HPV heals. When the drug is causing such issues then it’s worth trying something else. I have been doing 30/15 mg alternating every day...

10/12/2023 10:21 AM

Ulcerative Colitis
Flaring on Entyvio

I never notice anything with Entocort. It is just too mild of a drug and I have severe UC. I think I was on it for 2 weeks before I landed in the hospital on IV steroids....

10/10/2023 2:55 AM

Ulcerative Colitis
pink and ring finger issues

I have had ulnar nerve entrapment for a long time but just live with. It goes down the back of my shoulder along the outside of my elbow and into my pinky/ring finger. Things that help it are nerve...

10/10/2023 2:52 AM

Ulcerative Colitis
In a pickle: Stelara, Rinvoq, Flaring and o/s trip coming up

Hey girl I have never responded to enemas of any kind but did ask for them again and was told no. My doctor isn't a fan and neither were the hospital doctors. They said its not good to add them when...

10/9/2023 3:05 AM

Ulcerative Colitis
In a pickle: Stelara, Rinvoq, Flaring and o/s trip coming up

Oh girl! I am sorry things have been so crappy for you. It is very confusing when doctors don’t agree on treatment plans at all. That happened to me in the hospital. The GI team couldnt understand...

10/6/2023 3:41 AM

Ulcerative Colitis
GOOD NEWS TO SHARE....

So glad you are finding relief, Wayne! I know we were sick around the same time and am happy Xeljanz kicked in. I know nothing about the dosage for that medicine but always check with your doctor to...

10/3/2023 10:16 AM

Ulcerative Colitis
Horrible joint pain

I think it could be Remicade. My joint pain has literally gone down by 75% or so since going on a JAK inhibitor. I had horrible joint pain since starting Remicade and then Humira and Simponi. I...

10/3/2023 10:13 AM

Ulcerative Colitis
In a pickle: Stelara, Rinvoq, Flaring and o/s trip coming up

This makes me so sad for you! I was hoping you were doing as okay as you possibly could. How bad are your symptoms on the 15 mg? I am unsure why increasing to 30 mg made you worse but it sounds like...

10/1/2023 8:14 AM

Ulcerative Colitis
Rectal administration of vitamin e in UC patients (study)

What Old Mike said. I definitely did them but it didn’t do anything. I tried both the capsules and the bottles of pure vitamin E oil. I cant remember what my carrier was if at all. It was a long time...

9/24/2023 10:21 AM

Ulcerative Colitis
What are your experiences with SCD?

I always think of SCD fondly even though it didn’t do anything to help my flare or inflammation. It gave me hope in a time when I didn’t have any. The food was healthy and nutritious but it is very...

9/24/2023 4:02 AM

Ulcerative Colitis
How many of us have flared after a scope?

If I am in remission, I have never flared from the scope. The biopsies always bother me a lot and give me pain but I recover. If I am flaring, the scope 100% of the time makes me worse. The biopsies...

8/31/2023 3:17 AM

Ulcerative Colitis
training too hard with auotimmune

Yes I cannot do cardio anymore. I was training for a half marathon on Remicade. It got me in remission and I flared after a month even though it had worked fine for several months. My GI said too...

8/31/2023 3:11 AM

Ulcerative Colitis
Is this constipation or what?

Yeah, I said most likely since Idk her scope results or inflammation markers/fecal calprotectin. My scope was great in July but I still have pain in my belly although less than before. I was actually...

8/26/2023 9:20 AM

Ulcerative Colitis
Is this constipation or what?

Heather, most likely- I know mine was still healing. My hard poops felt like a hot poker sliding through my colon. I would almost pass out on the toilet from the pain and just pray I could get...

8/26/2023 6:32 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Tonito, yeah it did happen in the trials. The rinvoq manufacturers came to the hospital this week to discuss a few cases of this with the GI team. They said my case isn’t too bad and to just monitor...

8/26/2023 6:28 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Barnsbury- wow your situation is similar to mine! I am sorry about the pain you have dealt with. Were you in drug trial for rinvoq? I didnt know it was out so long ago. Changing drugs when you feel...

8/26/2023 6:24 AM

Ulcerative Colitis
Is this constipation or what?

Minnie, are you on steroids and rinvoq? For me, when I started getting formed stool by end of May into June, they were super hard. This is always my sign that inflammation is going away since my...

8/25/2023 2:00 PM

Ulcerative Colitis
I weaned off Humira and I'm doing ok! My pharma-free almost-remission protocol.

Magicbeans, do you plan on getting a scope to see how things look? Do you have a plan if things get worse? I am curious what herbs you are trying. I have always loved natural medicine even if if is...

8/25/2023 5:28 AM

Ulcerative Colitis
Dizziness turned out to be vertigo. Does Rinvoq cause vertigo?

Minnie, I dont know if this will help but I have had vestibular migraines for ten years so its basically inner ear migraines but I get dizziness, positional change wavering/tilting, nausea and...

8/23/2023 10:20 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

SN, yeah I think this issue is more common so I am glad the Gi team is able to meet with Rinvoq about treatment options. I hope it stabilizes! I dread getting labs every month! Clo, this current test...

8/23/2023 7:08 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

My appt with Gi nurse practitioner went well. She does not agree with the PCP at all due to the success and healing I have had on rinvoq. She said this has been happening to several patients and one...

8/23/2023 4:53 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Keith, how come you are on stelara now? Is it for the pouchitis? You have been through a hard time as well to say the least. My GI doctor has crohn’s and has been on stelara for a long time. Many...

8/22/2023 7:23 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

I will update here once I talk to GI tomorrow. I do all my lipid tests fasting in the morning since that is what my doctor tells me to do. I am hoping they will reduce me to 15 and monitor me after...

8/21/2023 3:39 PM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Oh guys. I had such a depressing appt with my PCP. I had a physical scheduled for today anyway and we went over my labs. She recommends stopping Rinvoq immediately because the increase in cholesterol...

8/21/2023 12:19 PM

Ulcerative Colitis
food avoidance/food missed..

I seem to react only to fiber rich foods so as long as I keep those low, then I am fine. I have to avoid the cruciferous veggies totally and beans and corn. Basically, anything gas inducing but small...

8/20/2023 6:50 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Thanks Serenity. That is always the hard part of our medications. It was my GI who ordered the bloodwork again based on the numbers being high last time. The rinvoq website says adding a statin is...

8/20/2023 6:24 AM

Ulcerative Colitis
Rinvoq causing very high lipid numbers

Has this happened to any of you on rinvoq? They have been going up ever since I started rinvoq in April and my nurse said they would most likely go down once the acute phase reaction was over. Well,...

8/20/2023 4:31 AM

Ulcerative Colitis
Rinvoq and dizziness

I haven’t noticed any dizziness on rinvoq. My main starting side effects were chest heaviness/tightness, hard to walk uphill/upstairs, out of breath, severe lethargy. It was hard to do anything those...

8/19/2023 10:06 AM

Ulcerative Colitis
Rinvoq dose

I dont think it matters how you take the 45 mg. Maybe he thought it would upset your stomach taking it all at once. I took the one 45 mg pill in the morning without food. I would most likely take...

8/16/2023 3:24 AM

Ulcerative Colitis
Discharged today from VA Hospital

Hope this new meds makes a noticeable difference for you, Wayne! Getting sick from the hospital is so common so I hope you can get that under control. Doesn't help that you are on all drugs go...

8/13/2023 4:17 AM

Ulcerative Colitis
Off Rinvoq for now...determining next steps

Haha I am well aware poopydoop. What do you prefer the third class to be called? I put it in that group because thats how my doctor and state does it. There are the 5asa’s, immunosuppressants and...

8/13/2023 4:15 AM

Ulcerative Colitis
Off Rinvoq for now...determining next steps

Rinvoq was the slowest biologic/JAK I have tried. Remicade and Simponi worked immediately overnight for me. Rinvoq took 8-10 weeks to work for me so it might be worth it to stick it out and start it...

8/12/2023 3:07 AM

Ulcerative Colitis
Nausea meds that don't cause constipation?

Omg please get help you insane woman!!! You sound completely unstable and should seek better therapy for whatever the heck is wrong with you because whatever you are doing is not working. I was just...

8/5/2023 12:17 PM

Ulcerative Colitis
Nausea meds that don't cause constipation?

Have you tried the pills/chewable tabs? They do not taste good at all because they are so spicy but they work 1000x better than tea or ginger chews/suckable candy. They can burn quite a bit at first...

8/5/2023 2:05 AM

Ulcerative Colitis
Nausea meds that don't cause constipation?

Marinol and ginger pills work awesome for me. I use 5 mg Marinol (2x daily) and then 3 ginger pills a day when nausea is bad. My prednisone nausea was horrible and I could barely eat so the ginger...

8/4/2023 1:50 PM

Ulcerative Colitis
Can’t catch a break

I made an appt for Friday to go over stuff with my nurse and ask if any biopsies were taken. If they weren’t, I assume he didn’t think they were necessary and I just have to go with his expert...

7/17/2023 11:57 AM

Ulcerative Colitis
Humira or Skyrizi?

My doctor also loves Skyrizi and said that would be my next try if Rinvoq does not work (but it has worked very well so far- just very slow at symptomatic relief compared to the other meds I have...

7/16/2023 2:26 AM

Ulcerative Colitis
Colonoscopy prep

Faith, I had this problem too and did not take my sleep meds the night before the scope because I knew I would be getting anesthesia in the morning. I regretted it the next morning but was worried...

7/15/2023 9:10 AM

Ulcerative Colitis
Can’t catch a break

Thanks quincy! I dont think any were taken this time. It doesn’t say on the paper he gave me and I dont remember what he said after I woke up. My bf doesn’t recall anything besides “your colon looks...

7/15/2023 8:59 AM

Ulcerative Colitis
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