Stelara is working!!!

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U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/5/2017 10:38 AM (GMT -7)   
I think I'm in remission....maybe...don't know.....close perhaps??

Going 2-3 times a day. Normal. At times urgency but I generally go in the morning and go about my day. I do have anxiety about eating out and road trips so on those days I just take an imodium rather than risk an accident or even just the hassle of pooping in a fast food joint. Gross.

Side effect seems to be chronic yeast infections that I can't rid myself. Nausea and at times vomiting. Some days I'm weak but that's likely the disease.

Still using IVIG and I think the combo is good.

QOL is much, much better!! Back to ballet although I struggle with weakness. I sleep a lot. My hair is full, thick and curly again. Weight is good, too good. Ooops I gained back more than what I lost. I'm eating everything but severely limit salads etc.

Bad news...still dealing with perianal and RVF. Ugh.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1831
   Posted 12/5/2017 12:37 PM (GMT -7)   
I'm so glad you are having good results!!
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10098
   Posted 12/5/2017 12:53 PM (GMT -7)   
Congrats UB :p
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/5/2017 2:21 PM (GMT -7)   
Would you guys say I'm in remission? At least the bowel part?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/5/2017 7:05 PM (GMT -7)   
Oh wow! I am so happy to hear you're feeling healthy and positive.

I was upset when I saw that last line about the RVF, but everything else headed to a good place, perhaps it will all end up where you want to be with a little more time.

So happy for you!
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.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 12/5/2017 9:09 PM (GMT -7)   
It sounds like pretty good remission to me! You'd need a colonoscopy to confirm (make sure that there's no actual inflammation as opposed to no symptoms). But I would say you're good! smile

As a side note, I'm guessing the yeast infections are related to the RVF, not just the Stelara. I've found with mine I have to take about a month of Diflucan AND use the OTC cream for like a week. Take a probiotic to help with them.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 724
   Posted 12/5/2017 9:50 PM (GMT -7)   
UB,

I think you are pretty darn close to...if not in...remission.

The yeast infections...I am not on Stelera so my experience will be different. I too think they are due to the RVF. I use monistat on mine when they get too bad and it seems to help...plus calmoseptine and I use the special shower head to clean that area every day....and if it is bad...2 to 3 shower times a day...then dry the area with a hair dryer. Sometimes I will wear a little pad. Inconvenient but it seems to work for me. My CRS told me to do this...he said getting on and off the antibiotics was not good for me...it upset my tummy so much my other fistulas started acting up. So I dunno...

The fatigue is probably caused by Crohns.

You sound like you are in a good place right now. I am so very very happy for you!! I hope it gets better and better!

PS... Have not forgot. Will talk to my CRS in 3 weeks and get back to you....

Hugs!!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/6/2017 4:27 AM (GMT -7)   
Thank you everyone!! It feels good, but for the itching lady bits.

Update: I cannot be sure the RVF re-opened. No drainage, or stool (never had any). I saw the uro-gyne and she couldn't see one. It was always small, less than 2mm and really only visable through a EUA for peri anal abscess. She swabbed me for yeast. I did feel it burst open (ouch) about 10 days ago. Actually unsure if I'm passing gas through there.

Awaiting MRI date.


The Complication:
3 weeks ago I had the first yeast infection (diagnosed by her). Canesten didn't touch it so I used diflucan and it worked. (At this time the RVF was confirmed closed). The complication is that I also had a ureaplasma infection likely caused by all the peri anal drainage from the fall. So at the time of the yeast infection treatment I was also diagnosed with this AND prescribed antibiotics. As we know abx also cause yeast infections. I finished abx on Monday and itching returned on Sunday.

Current:

I used boric acid yesterday and just now when I woke to pee the itching returned. I cannot sleep it's so bad. How long does it take to get a swab back? What should I do?

I'm using florostor and another probiotic. Cotton undies etc.

I feel a bit saddened by this, given bowel is so good. Could I just feel entirely good for once??? GRRRR
This is interfering with my life!

Suggestions my wise friends?

Post Edited (U B Tough) : 12/6/2017 4:47:11 AM (GMT-7)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11050
   Posted 12/6/2017 6:54 AM (GMT -7)   
Glad your bowel symptoms are under control! Sounds darn close, if not in, a remission. I always give it a few months before declaring the R word though.

Get one issue out of the way and perhaps the others will soon fall like dominos too!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/6/2017 2:35 PM (GMT -7)   
How long did you take the diflucan? If it's a bad infection, it can take a couple weeks. They also sell different doses. I did 200mg for 2 weeks once because I had thrush and yeast from antibiotics.

I like boric acid because it's easy, otc and it can treat both yeast and bacteria, but boric acid can also take multiple doses to get things headed in the right direction. I have done those for a week straight. I am thankful, at a certain point, my yeast issues calmed and stayed calm. Hope yours do too. How many days have you used the boric acid continuously? I'd be a little careful with the acid and the fistula, or open wound.
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.

CCinPA
Veteran Member


Date Joined Dec 2014
Total Posts : 942
   Posted 12/7/2017 3:47 AM (GMT -7)   
That's good news! Glad it's working for you!!!
58 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission since 10/16, confirmed by scope in Dec 16. Current meds: Entyvio 7/22/16, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). omeprazole. OTC: Loratadine 1/day, multivitamin 1/day.

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 472
   Posted 12/7/2017 4:52 AM (GMT -7)   
Hey there. That is great! I just had my first stelara infusion about 10days ago. I am feeling better now. Blood work taken yesterday show Crp and sed rate were normal range! First time since Jan. So hopefully it’s the stelara and not coming out of a flare on my own. I am still anemic, but one more iron infusion to fix that.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/7/2017 10:17 AM (GMT -7)   
miro- I've been on in since May and while things weren't bad they were bad enough if that makes sense. I think it worked rather quickly, although I have had a couple of "blips." Still steady progress and am doing very well!

NSSG-- perhaps you understand my distress. I spent yesterday in a ball on the couch. I finally ran out to the drug store to get Difulcan in the afternoon. By the evening things were a bit better but had a massive headache and just feel extremely gross and lethargic. (I also re-started my anti depressant so I feel loopy and can't really see!)

Peeing makes me itch and burn. My pelvis is swollen.

I think I've been dealing with this for a month now. I took Diflucan 2 weeks ago along with canesten and that really helped and I thought the infection was gone. It's come back with a vengence (although I haven't had confirmation from swab). I took boric acid for 2 days and didn't feel it did anything, so last night I switched to canesten cream. I think the diflucan is 150mg and a one dose pill. So, in short this is my 2nd dose in 2 weeks.

I'm going nuts and cancelled a xmas market trip today because of it! I don't think I could put jeans on. It's very upsetting dealing with this. It seems I'm either dealing with peri anal disease and the effects on my lady bits. Trying not to cry here but it makes me mad especially when bowel is so good.

Any suggestions? I don't know what else I can do. The pain really hasn't eased.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/7/2017 10:34 AM (GMT -7)   
I took 200mg every day for well over a week to rid myself of the most terrible yeast infection ever. We can't buy it OTC, I had to go to a DR. My regular doctor, or OB, would give me one tablet, but this was an ID dr, and I had a really bad yeast infection, so he gave me enough to combat it. I was on antibiotics at a high dose for a long time for sepsis, so it wasn't a surprise I ended up with yeast, and I don't think one or two tables would have helped. Have you tried regular cortisone cream for the bits? Monistat sells one that's at the drugstores. Also, stay dry and airy. Wear skirts. I have a prescription Clotrimazole-Betamethasone cream here that works wonders for my butt. Might be helpful for you.
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.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3321
   Posted 12/7/2017 10:57 AM (GMT -7)   
Sometimes when yeast infections are really bad, it takes like a week of diflucan pills to get rid of it. I've even been on them as long as two weeks before.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/7/2017 7:05 PM (GMT -7)   
Holy smokes!! I'll be seriously broke if I took it everyday for 2 weeks. As it is I skipped ballet tonight because my $ went to yeast and probioticssad

When I look back on this 18 months....I've been on abx for a good portion of it. And this last bout I was on doxyclycin while using yeast cream.

Hmmm. I don't know what to do. I had no idea you could take it every day. The web site says differently.

https://diflucan.ca/about-diflucan

I used a bit of monistat and it helped the outer portion enough that I could go to the store and thought about wearing tights......but things are getting bad again after I showered.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/7/2017 7:55 PM (GMT -7)   
Yeah, I guess normally people take one dose for a standard yeast infection and it's 150mg. I definitely took 200mg for 10 days or two weeks to get rid of the one I had. I had thrush and everything, my throat was covered in white spots. I think you should consider it if you don't improve, but I know money is a consideration. isn't medical covered up there? I wish you could get the diflucan covered at least. You need it.

I took generic fluconazole, btw.
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.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/8/2017 6:42 AM (GMT -7)   
Holy geez, that sounds purely awful. Sorry you had to go through that.

I need to get on another dose. I'm bad again this morning. Meds aren't covered heresad

Thanks.


Update: Just heard from gyne---swab from Monday came back negative. But I wasn't itching as badly then. Going back to see her this afternoon. I'm going mental. I really hope this is yeast and not my problems with the RVF. I've struggled for over a year to get a nerve block or botox but no one will listen.

Post Edited (U B Tough) : 12/8/2017 7:26:28 AM (GMT-7)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/8/2017 9:13 AM (GMT -7)   
hmm, negative swab. That's interesting. I really hope it's not to do with your RVF too. I am so thankful you're seeing improvement in your IBD symptoms, but having this other stuff going on is not going to allow you to really start feeling well. Let me know how it goes with the recheck today. Hoping for something simple.
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.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/10/2017 6:34 AM (GMT -7)   
'update: it's not going well. Uro-gyne didn't really take me seriously and had no answer or suggestions. My urine was very cloudy so they are testing it. That's it. Out of desperation, yesterday I took another diflucan and once it kicked in I got about 6 hours relief. But this morning it's back.....I've taken a benedryl to see if that helps. I have to sit through a b'day dinner and tomorrow 8 hours of !VIG. I don't know how I'm going to do this and have to figure out what I'm going to wearsad


It's been a month of this.

Post Edited (U B Tough) : 12/10/2017 7:24:47 AM (GMT-7)


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4819
   Posted 12/10/2017 8:10 AM (GMT -7)   
I get yeast infections whenever I go on antibiotics. I’ve taken Flucolanzole for 2 months straight. I don’t have an issue now that I’m off antibiotics since Stelara is working for me.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1548
   Posted 12/10/2017 3:35 PM (GMT -7)   
Research the strain bacillus coagulans, its the best probiotic for yeast. Diflucan is just treating /killing the yeast but not fixing the problem in your gut.

I had horrible yeast infections after my RVF and antibiotics for months for all my surgeries. The only thing that stopped them from coming back was that probiotic plus garlic.

I take one probiotic a day and one garlic a day and I haven't had any issues in 18 months
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!
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