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Ulcerative Colitis
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Posted 9/4/2024 8:49 PM (GMT -5)
Hi, I just need to vent! All I do is complain and people must be getting tired of it. I'm tired of it. It's been a bad summer health wise & mental health also is declining.

So here's why:
-I went on antibiotics for what seemed like a sinus infection
-I've had zero days in over a month, that my bms are "normal"
-Days usually start out with 3-5 # 6/7 on the Bristol scale, with urgent mucus, some blood, and whole vitamins and Mezavant casings visible along with gas, cramps and a burning feeling in the upper abdomen above my belly button.
-I am so tired I have 1 or 2 naps a day
-A routine Mammogram has progressed to a follow up with ultrasound tomorrow.
-FCP came back over 6060

I see my GP tomorrow also and will ask for blood work to check iron levels etc again. I recently had an Infusion of Entyvio, but that has not helped. Question: Can drinking 1 cup of decaff and an oatmeal cookie keep you flaring? That's the only thing I eat that are "no no" foods. I am craving sugar and chocolate! I have to make separate meals. Etc etc.

I don't think Entyvio is working, but I am very reluctant to try Rinvoq, because of the side effects. Not sure if Mezavant is helping either.

I'd appreciate any advice about meds etc. Sorry for the sad rant. Maybe I need another antidepressant! Lol
Sorry Sassy💩
Posted 9/5/2024 5:35 AM (GMT -5)
No need to apologize to anyone for what is going on. It sucks and I totally understand.
Posted 9/5/2024 5:51 AM (GMT -5)
Since you have been on Entyvio for some time, I would say it's time to move to a new med. All meds have a laundry list of side effects, but most people don't get them. There are a lot of options for meds these days. Not sure what all you have tried. Different people have success with different meds. Spend some time doing research. But they will ALL have a bunch of side effects listed.

Don't beat yourself up over having a cookie! There are some people who can manage their UC with diet modification. And for others diet doesn't have any effect at all. This is such a weird disease with so many different treatments and triggers. And for many there isn't a "trigger" -- we just flare because it's the nature of the disease.

The most frustrating thing is that everything is trial and error until you find something that works for YOU. Hang in there and feel free to vent any time.
Posted 9/5/2024 1:17 PM (GMT -5)
It doesn't make your flare worse or cause it...but your gut just might not like it.

q
Posted 9/6/2024 2:30 PM (GMT -5)
My Dr. Is to inform me next week about the Mammogram and ultrasound...so I believe it's fine or they would have informed me right away. My hemoglobin is still at 112 so no change. Otherwise iron etc is OK. And....wait for it....this morning I delivered a near normal BM! 1st #3 in about 6 weeks. Yes, my mood has been uplifted somewhat.
Now I will see what my GI will say about the high FCP level.
Sassy
Posted 9/6/2024 5:46 PM (GMT -5)
I totally missed that you were on antibiotics. They can cause diarrhea. Since you had a nearly normal BM today, it's probably not likely that you have cdiff. Do you take probiotics? They will help get your system balanced after the antibiotics.

It's scary when they call you back after a mammo for more imaging. It happens to me every time I go to a new imaging place. First time really scared me a lot. Now I just laugh. Sounds like you can breathe again.
Posted 9/7/2024 1:36 PM (GMT -5)
No breast cancer! Just a change of xray technicians. These old saggy b~~bs are hard to place on the Mammogram machine! 😆
I've had 2 days of # 3/4. So maybe those antibiotics did make it all worse. But I also stopped the medimucil for a few days.
It's up to my GI SPECIALIST to suggest what to do about the FCP high number. I've had a hard time deciding what to do about new meds. You have to be your own advocate regarding IBD health care, and I'm failing in that department. So I shall keep researching.
Appreciate the support..Sassy
Posted 9/8/2024 5:37 PM (GMT -5)
Midge, glad to hear I can still try something else instead of Rinvoq. But is Remicade an infusion? And can they go to 6-8 week intervals? I'll have to check it out. My ĜI started me on Entyvio without trying anything else first. I'm still on Mezavant full dose too. I like the idea that Remicade was meant for IBD...Rinvoq was for arthritis.
Back to the research...Thanks
Sassy
Posted 9/12/2024 6:24 PM (GMT -5)
Im failing entyvio almost 4 years on the medication started flaring and then I did a low carb diet basically eat meat fish and eggs and a hand full of nuts a day and some chocolate not much though and im doing much better Im starting to think that diet helps thinking about going total carnivore
Posted 9/12/2024 8:19 PM (GMT -5)
Killjoy123, how long did it take to achieve remission on Entyvio? Do I understand you were good until recently? And that diet may have much to do with failing this med?

I am tired of fish, chicken, eggs and mashed potatoes. I usually have white or sourdough toast for breakfast. I only nibble a bit from my husband's roast, or pork. I miss sauces and ice cream. And chocolate was always my crutch. I have problems sticking to a "good" UC diet!

Ever wish you had your own personal chef? I do!😋
Posted 9/16/2024 9:35 AM (GMT -5)
I achieved remission in about 8 weeks or so was doing good for about 3 years then in June this year started getting a flare which was getting worse. In July I received my infusion which I thought was going to help but it didnt. I read about a carnivore diet which helps people with auto immune issues. First I did a water fast for 3 days no eating then I ate just meat fish or eggs for about one month eating twice a day lost a lot of weight feeling better and going 0nce a twice a day to the bathroom I been adding foods this last month and doing intermitting fasting but I added a suppository which Im looking to wean off. The diet helped me you should give it a try theres nothing to lose
Posted 9/16/2024 3:08 PM (GMT -5)
So hard to kill the bread habit, and when I start feeling better I immediately start experimenting. The dumb human instinct kicks in quick on me. But I will give this diet a try.

Killjoy123 said...
Im failing entyvio almost 4 years on the medication started flaring ....... im doing much better Im starting to think that diet helps thinking about going total carnivore

By the way, what helped me get off the worst part of my current flare is VSL-4 inside my mesalamine enemas. Yup, VSL 4 in the colon through the enema. I carefully open 1 pill, empty it inside the enema, close it, shake it up well, and in 2-3 days my urgency decreased, the mucus and blood went away, frequency decreased and I was able to pass gas without having to worry about sharting. the joy of being able to fart without having to worry is liberating. my calprotecting went from 6000+ to 500. All this time I've been taking Rinvoq 45mg. Rinvoq has been very slow working for me. Rinvoq for me stops the flare from progressing but does not end it. I have to help Rinvoq with enemas and other methods otherwise I can go on for months to a year with Rinvoq just keeping the status quo.
Posted 9/22/2024 9:00 AM (GMT -5)

Sassysback said...
Hi, I just need to vent! All I do is complain and people must be getting tired of it. I'm tired of it. It's been a bad summer health wise & mental health also is declining.

So here's why:
-I went on antibiotics for what seemed like a sinus infection
-I've had zero days in over a month, that my bms are "normal"
-Days usually start out with 3-5 # 6/7 on the Bristol scale, with urgent mucus, some blood, and whole vitamins and Mezavant casings visible along with gas, cramps and a burning feeling in the upper abdomen above my belly button.
-I am so tired I have 1 or 2 naps a day
-A routine Mammogram has progressed to a follow up with ultrasound tomorrow.
-FCP came back over 6060

I see my GP tomorrow also and will ask for blood work to check iron levels etc again. I recently had an Infusion of Entyvio, but that has not helped. Question: Can drinking 1 cup of decaff and an oatmeal cookie keep you flaring? That's the only thing I eat that are "no no" foods. I am craving sugar and chocolate! I have to make separate meals. Etc etc.

I don't think Entyvio is working, but I am very reluctant to try Rinvoq, because of the side effects. Not sure if Mezavant is helping either.

I'd appreciate any advice about meds etc. Sorry for the sad rant. Maybe I need another antidepressant! Lol
Sorry Sassy💩

Sorry to hear. I use sfRowasa (sulfite-free rowasa enemas) from time to time and they seem to help quite a bit. Worth a try for a few weeks. I wish I had starting treating from below years ago - that's where the majority of my symptoms are.
Posted 9/22/2024 10:11 AM (GMT -5)
Had a consult with my GI. He is suggesting Rinvoq, but it's not covered in Canada yet. I will try something else that is. However, I've had intermittent days of constipation and # 3s for 2 weeks now, and feel better. COLONOSCOPY will help me decide. Maybe I should look into enemas again.

Lately I've eaten raw carrots and lettuce without problems. I've gained 4 lbs in 2 weeks. I'm wondering if the antibiotics really did make things worse. And I'm still drinking 1-2 cups of coffee in the morning!

Release for a 6 day cruise today...yeah--no more cooking!😁
Posted 9/23/2024 5:03 AM (GMT -5)
Enjoy the cruise! Hopefully UC behaves for you.
Posted 10/1/2024 6:20 PM (GMT -5)
Thank you! I really enjoyed the cruise. I was only constipated a bit, but had 2-4 bms daily. I pretended I did not have colitis and ate every thing I wanted..almost. Never got sick, except a cold on the day after we got home.so I had to cancel my infusion today.
My husband always says I talk myself into getting sick..or always think the worse will happen. I should be more positive. I don't want to admit he may be a tiny bit right.😒
Posted 10/1/2024 7:58 PM (GMT -5)
lol ... glad you enjoyed the cruise! Interesting that food didn't affect your UC on the cruise. Maybe you don't need to be as strict with diet as you were. Are you going to be switching to Rinvoq (or something else)? It doesn't sound like your symptoms are too bad so you have some time to decide what to do.
Posted 10/2/2024 4:42 PM (GMT -5)
CC...at this time, I will not start Rinvoq. After eating different foods on the cruise it feels like I am healing, but have rectal inflammation still. Hopefully this will reduce and the colonoscopy will show this.
On Entyvio I'm at 5 week interval from the ordinary 4 weeks. And maybe can go to 6 weeks. IDK...it's a wait and see game.
Posted 10/3/2024 1:18 PM (GMT -5)
Sassy...happy to hear you had an awesome holiday cruise! Hope your cold is short-lived. Seems a normal thing after being in different locations and with lots of people.

Re rectal inflammation, and I haven't checked if youre using them, but retention mesalamine enemas would be helpful.

q
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