How is everyone doing? checking in

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iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11035
   Posted 6/14/2017 1:44 PM (GMT -7)   
I wanted to take a moment and ask how everyone's UC symptoms are: whether you're flaring, simmering, in remission and out enjoying life! A lot of us post to help others and don't often say how we're doing, ourselves. Might be encouraging to others to know that some of us are living the dream, or know others are struggling too, just like they are!

I'm 5 months post-pred and wishing I was in a true remission again (while being on a butt load of meds), and am not a patient person haha. I vary between 1 and 4 bms a day (averaging 3), all formed and early in the AM with no real urgency (I can hold it a while), but with blood on tp randomly appearing every 3 weeks or so which is a bit perplexing, with a series of really good days, followed by a series of really bad days. You know the typical UC emotional rollercoaster ride, I'm getting better, oh crap I guess I'm not afterall, oh wait things are getting better now, and mix and repeat in syndication. Call it simmering but very mild inflammation with good but not perfect CRP and FCP scores. Seeing my doctor in another month and will ask about shaking things up again to see if we can get me back into the promised land of remission. Holding tight and hoping for the best!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Lialda, and rowasa

I swore to myself that once i was off of prednisone that I'd burn both the pills and bottle with great hedonistic enjoyment: booze, food, and dance. And if I ever need a colectomy... ;-)

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3941
   Posted 6/14/2017 2:04 PM (GMT -7)   
I am in my usual semi-remission. Lots of bm, but likely due to missing part of colon. No blood. No anemia.

Going to slightly increase triple-fiber supplement
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 420
   Posted 6/14/2017 4:28 PM (GMT -7)   
Thanks for your update ipoop! I've been wondering how your UC was doing. Thanks for always being here for us with your knowledge and calming rationale.

I have a simmering lingering inflammation too. I've had my 3 loading doses of entyvio and its been 7 weeks since then. My next dose is next week and I'm really anxious to see if it pushes me into total remission I'm having 2 formed BMs a day. Some days I have a bit of mild cramping or a dull pain in my lower left but no mucus or blood. And I still have low energy and tiredness. But my appetite is good and I'm gaining weight. And I can have coffee again in moderation! Overall its good! Oh! And I'm off prednisone! Using Canada at night and uceris foam in morning.

Post Edited (FlowersGal) : 6/14/2017 10:20:03 PM (GMT-6)


Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2045
   Posted 6/14/2017 5:27 PM (GMT -7)   
I am in remission and have been for oh, over two years now since my last flare. I am dutifully taking my maintenance dose of Mezavant, so it's not the ideal because I'd rather be med-free but I have accepted it. I was having my iron checked every two months but graduated to every 6 months so as far as I know I am fine in that regard. Had my kidney & liver functions tested a couple months ago and they were fine. I am having the kidney function tested every six months along with the iron and then the liver just once a year.

That's about it!
Female, 50, Vancouver BC
Pancolitis: Currently in remission

Jan-Mar2009: Asacol HD. Resulted in severe joint pain and no discernible benefit.
May26-Sep4/2016: Mezavant 4800 mg
Sep5/2016 - : Mezavant 2400 mg

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 6/14/2017 7:12 PM (GMT -7)   
Well 3 a day doesn't sound too bad. I'd take that, so long as I am not darting to the toilet.

For me, I am the same, no meds, not focused on UC at all anymore. Going more than normal people, but it's quick, painless, not urgent. Can't complain!
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 6/15/2017 2:40 AM (GMT -7)   
Hey ipoop, sounds like you have a handle on your situation and I am sooooo jealous that you're off the pred.

I am on the roller coaster. One day lots of blood, pain, urgency and no formed stools. But then days like today where stools are mostly formed and no sign of blood (but still urgency, still not "normal" BM's). I'm anemic still--last hemoglobin was 9.5, and I have no idea what my CRP or other inflammatory markers are but I'd guess pretty high.
Currently on Humira 40mg/week + 37.5mg Prednisone + 6MP 50mg + Cortifoam + Apriso, and *still* nowhere near remission. Oh and I still have a perianal fistula. Humira isn't working so hoping start Stelara (have it work), taper off prednisone and find myself in remission. But preparing for surgery if Stelara fails. I'm as sick of the meds as I am of the disease.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Humira, Apriso, Cortifoam, Prednisone, Buproprion, Synthroid
Started Humira 2/4/17 now 40mg/week, Started 6MP 50mg 6/2/17
Previously failed Remicaid. Previously used: Asacol, Lialda, Delzicol, Pentasa, Cortenema, Rowasa, Canasa, Entocort, and Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE iron

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1866
   Posted 6/15/2017 3:51 AM (GMT -7)   
I have been going between feeling great and simmering since January. Stress seems to kick my colon into fussy mode for sure. May was a great month, no issues what so ever but the past few of days my Sigmoid has been aching and I've had mucus again. Going 1-2 times a day, although mostly 1. Going to to up my rowasa to nightly for a week and see what happens. On 4 lialda still as well.
41 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa nightly - supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 2 TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

jsanch6couv
Regular Member


Date Joined Nov 2014
Total Posts : 66
   Posted 6/15/2017 5:07 AM (GMT -7)   
Thanks for the update on your condition, and thanks for everyone who has responded. This is such a lonely disease, and it greatly improves my outlook to know that I'm really not "alone."

My current flare seems to be improving, but I'm definitely still on the roller coaster. Haven't seen blood in about 5 days (woo hoo!), between 2-5 formed bm's daily, very little liquid but still seeing some mucous, urgency not as bad as it was. Energy is still low most days, but seems to be improving. Still not sleeping through the night without toileting, but it's usually just gas. Gas has been a beast during the last few days, causing formed bm's to shoot out like a rocket LOL! Drew antibody and trough levels for Humira on Monday and still waiting for results. I like my new GI. He seems extremely knowledge, great bedside manner, and he's confident he can get me into remission. I've been told by many of the nurses and PA's in his practice (independently of one another) that he cares for some of the sickest UC patients in the southern part of our state, and that is indeed reassuring.
Jessica, 35--dx'ed proctosigmoiditis June 2014

Flaring since June 2016
Humira started 12/4/2015, upped to weekly dosage 5/18/17
Other weekly: (started 5/18/17): Methotrexate 15 mg, Folic Acid 5 mg, Zofran
Daily: Rowasa AM, Colocort PM, Lexapro 10 mg, Probiotic, Vitamin D 2000 IU (sublingual), Liquid Multivitamin
Prior meds: Lialda 4.8 mg (DC'd 5/18/17), Pred taper finished 5/24/17

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 56
   Posted 6/15/2017 8:43 AM (GMT -7)   
I am much better. Considering i was two days away from losing my colon and now i have two normal BM's a day and no blood i feel very fortunate. My only real symptoms is some urgency and nasty growling in the my lower colon. The remicade is obviously working and my trough levels are good.
My CRP has risen from below 1 to a 4 but my GI and I think that may be related to all the competitive cycling i do. The training adds to general inflammation. I was never sick prior to remicade and in the last month have had both the stomach flu and chest infection but hey, i guess it is worth it. Must say i am very grateful but still very apprehensive that the disease will return with a vengeance.
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 220
   Posted 6/15/2017 10:45 AM (GMT -7)   
I am enjoying remission! I can't believe I fought so hard against biologics. I am on Humira weekly and aside from injection site reaction I have zero side effects and feel amazing. Hoping everyone can find remission and stay there. Stay strong!
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

Diaven
New Member


Date Joined Mar 2017
Total Posts : 16
   Posted 6/15/2017 11:08 AM (GMT -7)   
Hi. Still in a flare. Have been since Feb. Some good days and some bad. Just started prednisone. Started with 30 taper to 20 etc. you all know the drill. I'm hoping this will be my magic drug to put me in remission. Third day of taking it and BMs have been fewer but still with some blood and urgency. (5 to six BMs versus the 8 to 10 so far). You're right it is a lonely disease but I have gotten over feeling sorry for myself. I sure had a few self pity parties. When I found this forum it made things so much better in my life. My husband is terrific but nothing like having others who are going through it or who have gone through it. A GREAT big THANK YOU to all of you!!!!

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1970
   Posted 6/15/2017 12:37 PM (GMT -7)   
I'm in remission. Loving it!!
MODERATOR-UC FORUM
58, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

zarch
Regular Member


Date Joined Apr 2015
Total Posts : 40
   Posted 6/15/2017 1:01 PM (GMT -7)   
The past year has been such a roller coaster for me.

Last July I was hospitalized for the first time due to a flare. Over the next 2 months I was hospitalized 3 more times due to not being correctly treated at first, and later due to tapering too quickly on pred.

I went from 155 lbs. to 130 lbs, and then shot up to 177 lbs. The pred. kept me out of the hospital, but I looked terrible, felt terrible, and became depressed. I got oral thrush, folliculitis, and c-diff between August and October.

I started Remicade last October and responded very well to it. I was able to come off pred., and I considered myself in remission since I had 0 UC symptoms. I began working out and bettering myself. By January of this year I had lost all the pred. weight, and began training to run my first 5K.

In March I noticed some blood returning in my stool. This terrified me, but my doctor just thought it was a small hiccup, and thought it would correct itself.

By May I was into a full flare symptom-wise, and eventually went to the ER near the end of the month. Back on pred. for me! I also lost a lot of energy, so no more 5k. I'm still running when I can though. Don't want to lose what progress I have made.

I'm on a much lower dosage of pred. this time, so hopefully the side effects won't be as bad. I had a flex sig. done which confirmed I am in an active flare (no surprise) with moderate to severe inflammation. I've been waiting for 3 weeks to get my Remicade antibodies test back because my doctor and I have been playing phone tag. We just can't seem to get in touch!

If it turns out I have built up antibodies to Remicade, I'm considering trying Simponi next. If anyone reading this has tried it, let me know your results. In the mean time, I've began taking Isatis Cooling supplements. It seems to be helping reduce my bleeding and number of BM's, but I don't think it's effective enough for me to go without pred. completely.

I'm hoping to get all this behind me because I've had to quit 2 jobs, and drop out of grad school due to this year long ordeal. If another biologic fails me, I will highly consider a colectomy if my doctor thinks it will solve everything. I'm only 24 and don't want to play this game with UC for the rest of my life.

Thanks for reading. smile

KCFLY
Regular Member


Date Joined Jun 2017
Total Posts : 46
   Posted 6/15/2017 3:36 PM (GMT -7)   
I am at the beginning of this journey.

I have been having multiple urgent trips the bathroom daily since early January of this year. I am averaging 8-12 trips a day. I don't believe I have had a formed BM since 2016. I have lots of aches and pains, fevers, chills, low energy, etc.

Things are pretty bleak in my world right now.

Today I am doing the wonderful prep for a colonoscopy tomorrow. Perhaps I will get better information and a better plan of action this time.

I am getting sick and tired of being sick and tired. It's good to know that this can be beaten back and that a "normal" life may be within reach again. It's harder to imagine each day that goes by.

So far I have failed on Apriso and a round of Prednisone. I am taking budesonide now in addition to Lialda and feel the same as before I started taking all the meds. Super frustrating 6 months.

BlueSun
New Member


Date Joined Jun 2017
Total Posts : 9
   Posted 6/16/2017 7:46 AM (GMT -7)   
Last few years my UC has become unresponsive. I am on that roller coaster too. Last year was REALLY BAD. I had adverse drug rxns to Anacort and prednisone, which has NEVER happened with pred. I think something else was going on b/c now I tolerate pred.

Wow, what is a formed BM like???? That is a very long ago memory for me LOL

I go 10-15+/day.

Doc just put me on 40 mg pred and took me off Lialda, and wants me to contact him in a week. Had liquid and an accident this morning. I have been up 2 hours and gone 5 times, with the accident.

He wants me to try entyvio infusions. Now my insurance has to be encouraged to allow this. if not, I will have to pay out of pocket. :-(

Used to be I would get on pred and it would miraculously "cure" it right away. Does this mean pred is also becoming useless?

I feel good though. I love the way pred makes me feel haha lots of energy and all

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11035
   Posted 6/16/2017 8:50 AM (GMT -7)   
Unfortunately insurance decides what meds we take and in what order. You might need to try remicade or humira 1st, and they do have much, much quicker response times than entyvio does. All of those meds do have patient-copay assistance cards from the manufacturer. Our uc severity determines what meds work and at what doses not work, I'd wager this flare is just a whole lot more severe than past ones for you were. IV steroids are sometimes needed. Just make sure you're tested recently for pathogenic causes like c diff, as not responding to steroids often is red flag to verify it's not an infection (infections are worsened by steroids, not helped). Hang in there, it does get better.

Post Edited (iPoop) : 6/16/2017 9:54:07 AM (GMT-6)


Hampy
Regular Member


Date Joined Feb 2017
Total Posts : 45
   Posted 6/16/2017 9:37 AM (GMT -7)   
With the masses of help and support I have received from this forum and in particular ipoop (who managed to guess my exact diagnosis and likely meds again exactly ) I am now in remission and back to my own self again apart from a strange experience of purple Urine today which now believe to be pentassa reacting with bleach.

This forum is a life saver
Diagnosed with proctitis Jan 2013 was given pentasa suppositories 1g
14/02/2017 first flare up diagnosed with ulcerative colitis currently in remission 4g of oral pentasa and 1g pentasa suppository at night

BlueSun
New Member


Date Joined Jun 2017
Total Posts : 9
   Posted 6/16/2017 11:23 AM (GMT -7)   
iPoop said...
Unfortunately insurance decides what meds we take and in what order. You might need to try remicade or humira 1st, and they do have much, much quicker response times than entyvio does. .... Just make sure you're tested recently for pathogenic causes like c diff, as not responding to steroids often is red flag to verify it's not an infection (infections are worsened by steroids, not helped). Hang in there, it does get better.


Nope, I am a cancer patient; I am not going with TNF antagonists. None of my docs think this is wise. More imporatntly, I do not think this is wise. And that will be the approach towards insurance company.

yes, neg for c diff and all the pathogens - been tested 3 times in a year - haha - no one believes me LOL

Kulinarykidz
Regular Member


Date Joined Aug 2015
Total Posts : 439
   Posted 6/16/2017 7:41 PM (GMT -7)   
I've been enjoying a little ovet a year of solid remission with only some lower left side pain and light blood when wiping from what my dr thinks is a nasty little hemorrhoid.

BUT today, after closing on a new house We left for vacation and wouldn't you know...6 hours into the trip I've had a few pretty urgent emergencies. I'm hopeful it's a fluke and I just over indulged on salad. I can't seem to digest roughage lately.

Always love to hear from everyone and offer/get support as needed.
Female 45 years old- uc diagnosed 7/13
Remicade every 6 weeks since 8/15
Imuran 150 mg, viramin d, probiotic, estrogen, pepcid ac
*hysterectomy, endometriosis and ovarian cysts removed---made a world of difference with uc symptoms!!

zarch
Regular Member


Date Joined Apr 2015
Total Posts : 40
   Posted 6/16/2017 8:28 PM (GMT -7)   
Kulinarykidz said...
I've been enjoying a little ovet a year of solid remission with only some lower left side pain and light blood when wiping from what my dr thinks is a nasty little hemorrhoid.

BUT today, after closing on a new house We left for vacation and wouldn't you know...6 hours into the trip I've had a few pretty urgent emergencies. I'm hopeful it's a fluke and I just over indulged on salad. I can't seem to digest roughage lately.

Always love to hear from everyone and offer/get support as needed.


Traveling always seemed to aggravate my UC when in remission, but it usually calmed down after a day or two. Hopefully that's the case for you! I also have to watch my salad intake.

BlueSun
New Member


Date Joined Jun 2017
Total Posts : 9
   Posted 6/17/2017 9:39 AM (GMT -7)   
That sucks, Kulinarykidz. I love my salads, so I feel ya. It is so hard at times having UC and people don't understand. I have people saying to me - eat more fiber, eat more plants - they just do not get it that fiber can be the enemy during a flare. One friend sent me a layman's article that said he went with all plant-base diet and it "cured" UC. She said...you can cure it!I am sure glad to have found this place of fellow UCers.
Dx UC pancolitis 1988

jkingfrt
Regular Member


Date Joined Jan 2010
Total Posts : 54
   Posted 6/17/2017 10:55 AM (GMT -7)   
Currently in a flare that started in May 2017 with mucous and bleeding (I had been in remission for 2 years on Mezvant and Salofalk Enemas). Been on around 40mg of Prednisone since then along with the Mesalamines.

Had two scopes which showed severe inflammation for 20cm of sigmoid colon. Rest of colon was normal. CRP and bloodwork have been normal for most of flare.

BMs start mucousy and bleedy and then normal. I was going about 2-3 times a day for most of the flare until the last week or so.

Started Entyvio and Cortenema last week and started tapering prednisone from 35mg down 5mg each week. So far bleeding and mucous are reduced and BMs are trending down to 2 a day.

Next Entyvio infusion is end of next week.

Feel ok most days. Sad I have to escalate to such powerful drugs. Considering doing the Briggs protocol to see if I can get some mucousal healing done and become less dependent on immune suppression.

Hope everyone else is doing ok.

j.
Diagnosed 2002 w/ proctosigmoiditis
Diagnosed 2015 w/ pancolitis
In remission from 2015 to 2017 on 2.4g Mezavant (Lialda) Daily
Status: Flaring since early May 2017 - Trying to get into remission
Meds: 40mg Prednisone daily, 4.8g Mezavant (Lialda) Daily, 2g Salofalk Enema in morning and again at nigh
Vitamins/Minerals Daily : Curcumin 750mcg, Vitamin D - 1000 IU; Calcium-1300mcg

Post Edited (jkingfrt) : 6/17/2017 11:59:12 AM (GMT-6)


limey
New Member


Date Joined Sep 2016
Total Posts : 18
   Posted 6/17/2017 12:48 PM (GMT -7)   
Been flailing for quite some time with 20 plus BM per 24 hr period.
Sure felt very depressed not being able to go far unless close to a bathroom.
Just spent a week in the hospital where they started me on Humira and it sure has made a huge difference.
So far down to about 4 Bm per day.
Hope things continue

Aba
Regular Member


Date Joined Apr 2016
Total Posts : 51
   Posted 6/18/2017 5:27 AM (GMT -7)   
I'm now 2 months post surgery. I feel much better. Though I seem to have diversion colitis. I'm seeing the surgeon this week. We'll see what her advice is. It's wonderful not having urgency and not worrying about what I eat. So far I've had salad, beans, different cheeses, food with gravy, and some moderately spiced food. I did get some gas from cheeses and beans, however no cramping. Life with an ostomy is a tremendous improvement. I'm tapering off prednisone again, currently down to 10mg.
Male 33
Diagnosed ulcerative colitis April 2016, symptoms on and off since Jan 2016.
Current meds: Prednisone (tapering), Magnesium, Iron, lomitol as needed, morphine as needed
Past medications: Lialda, 6mp, cyclosporine, remicade, solumedrol
Supplements: Ferro-sequels iron
Total colectomy April 2017

Kulinarykidz
Regular Member


Date Joined Aug 2015
Total Posts : 439
   Posted 6/18/2017 5:02 PM (GMT -7)   
zarch said...
Kulinarykidz said...
I've been enjoying a little ovet a year of solid remission with only some lower left side pain and light blood when wiping from what my dr thinks is a nasty little hemorrhoid.

BUT today, after closing on a new house We left for vacation and wouldn't you know...6 hours into the trip I've had a few pretty urgent emergencies. I'm hopeful it's a fluke and I just over indulged on salad. I can't seem to digest roughage lately.

Always love to hear from everyone and offer/get support as needed.[/quo

Traveling always seemed to aggravate my UC when in remission, but it usually calmed down after a day or two. Hopefully that's the case for you! I also have to watch my salad intake.


I think it was definitely the salad! Getting back to normal now and enjoying some island time. Thank you!
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