Scared... Any Suggestions Much Appreciated

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jandgmom
New Member


Date Joined Jul 2008
Total Posts : 9
   Posted 7/11/2008 7:49 AM (GMT -6)   
Hi everyone,
 
I just discovered this board, so please forgive me if I have repeated questions.  But, I am at a loss.  Here's my story.  I'm a 29 year female dx with UC (spec. proctosigmoiditis) when I was pregant with my first child.  My second flare-up was with my second child.  And my current flare-up, I believe is a result of being put on birth control.  After about a month on birth control, I stopped it because I feel for me I have pin pointed the times of flare-up to be consistent with hormonal changes.  However, my treatment is not working. 
 
Previously, my UC has been controlled with Colazal (3-3x a day) and Folic Acid (1mg a day) and Canasa Suppositories (1 at night, as needed).  I was doing so good until the birth control, my doctor and I discussed reducing my Colazal from 9 a day to 6.  But, that is not in my near future now.  Any time I was in a flare-up, Prednisone worked immediately and wonderfully.  This flare-up is not responding to 60mg of Prednisone.  I was on 40mg of Prednisone for over three weeks with no change, so my Prednisone was upped to 60mg for 3 days now, with no signs of improvement.  My doctor also wants me to take Cort Enemas (I hate them because of a feeling of nausea/bloating immediately after usage!).  I have also been put on Flagyl which I have been taking for 3 days now.  As far as probiotics, doctor says they can't hurt, but most likely wouldn't help.
 
I'm scared because the Prednisone isn't working like before.  Per my doctor, I went to the ER three days ago to see if I needed IV antibioitics.  After labwork and a cat scan, everything came back OK, except for active colitis.  So, no IV was given and I was sent home with the instructions to up my Prednisone to 60, take Flagyl 4 times a day, take suppositories, take enemas all along with Colazal and Folic Acid.  I have been on this treatment plan for three days and sitll have painful urgencies resulting in pencil thin stools with lots of blood.  I have gone 4 times alone this morning since I woke up at 5:30AM.   It is now 8:30AM.  It tends to taper off in the afternoon only to return in the evening with 1-2 urgencies.
 
Does anyone have any suggestions for me?  I will see my doctor on Thursday.  I'd like to be armed with information.  As many of you know, it's dibiliatating to live your life in the bathroom.  I have two young children and a husband to take care of.  It's depressing because you want to get out and do things.  I told my husband the other night when I was reading some posts, "These people online get it!.  They understand the frustration of no public restrooms, or you must have a key to enter the bathroom (because my bowels will wait for the cashier to find the key to give me!) or the frustration of sleepless nights or how you worry how any new stress with result in a flare-up."  As a side note my Father had toxic megacolon and had j-pouch surgery.  He currently is doing great.  Sometimes I wish they would just take the diseased part out!    sad
 
I got a little off my original subject - but you all understand and I'm sure have more knowledge and insight.  I would appreciate any information. 
 
Megan

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/11/2008 8:04 AM (GMT -6)   
The Flagyl can in many people cause quite a bit of D (diarrhoea) and may well be masking the effects of the Prednisone.

Be aware however that most people only respond to Prednisone a couple of times before it rapidly looses effect.

How long ago did you stop the birth control? Have your hormone levels had time to stabilise or are they still in flux?

If you are still not showing any sign of improvement, you might be able to request your GI put you into hospital and give you IV hydrocort for a week or so. If I were you I would also ask for another colonoscopy. If the UC has spread, you *NEED* to know, I can't stress that enough. Treatment changes if it has moved deeper into the colon.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/11/2008 8:22 AM (GMT -6)   
Welcome to HealingWell, Jandgmom. I'm sorry you needed to find this site, but I hope it will be as helpful to you as it has been to many of us.

Flaring can definitely be related to the estrogen/progesterone cycle in a lot of us, so I'm not at all surprised by your story. (Others actually do better when pregnant - such a fun disease, we never know what to expect.)

Severin is correct about Pred losing it's effectiveness for a lot of us.

Since you have proctosigmoiditis, enemas are a good idea. Suppositories medicate your rectum, while an enema will medicate your rectum and sigmoid colon, so may be more effective. And be really, really compliant with the rectal meds because these are likely the ones that will help you the most.

It sounds as if your doctor is pursuing all the right steps in the right order. If what he's doing doesn't work, be prepared to discuss adding in other meds such as an immunosuppressant (Imuran or 6-MP.) Give it some time, though, three days isn't really enough to know whether your current regimen will work. It can take 2-3 weeks for enough effect to see a difference in your symptoms. If nothing else, this DD teaches us patience.

Hope you're feeling better soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/11/2008 8:28 AM (GMT -6)   

Since you have rectal disease it's really important that you use the rectal enemas no matter how discomforting they can be.  This is the best medicine for disease in that lower area.  You really need to give them a chance to work because if they don't you are going to need to evaluate you next line of defense.  Managing UC with prednisone should only be left for an emergency situation and since it doesn't seem to be effective for you anymore you need to try other medications.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/11/2008 8:48 AM (GMT -6)   
use the enemas, try rowasa or hydrocortisone, both have helped me tremendously.

My first time on pred it took 2.5 months to help me (I had to quit Asacol cold turkey and was put on pred the same day and I got worse before I got better), I flared at 5mg, I think b/c of the aspirin I took, It took me a good week on 40mg of pred to really start to see a difference, though I was on 20mg for two weeks before that. I'd say give the pred a couple of weeks to help.

Also, we are not supposed to take any kind of ibuprofen, aleve or aspirin they can cause flares, so not sure if maybe you took any of those, if you already know this then please disregard.

we are here for you, this place has given me so much, it feels good not to be alone.

Wishing you a speedy remission!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/11/2008 2:50 PM (GMT 0)   
I have no input on your current situation other than to wish you the best and pray for a speedy recovery, I've never gotten that bad.

I can suggest that once you have stabilized yourself if you are still looking for birth control I would suggest talking alternatives with your doc. I had similar issues, not as severe as yours, when I started birth control after my son was born. After I got the UC back under control which isn't easy when you are nursing because options are VERY limited. . . I sat with my OB/GYN and we talked for a long time about the different delivery mechanisms and hormone levels now available. It seemed that the least invasive and lowest dose around at this point is the NuvoRing so we tried it. Personally I love it. It delivers the hormones right into the designated organs because of where it's placed so there's nothing going through your digestive tract like pills do. I haven't had any reactions to it, not even the dreaded weight gain from some pills, no unexplained mood swings and best of all no ticking off of the UC. . . oh yeah no bloating/cramping all the time. . . only on the dreaded "visitor" days. I've been using it for 9 months now so I would call that a fair test.
Kim
========================
~ Mom of Nathaniel aka "Peanut" 18m (6/08)
~ Married ~ 36

"The List "

- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (good folic acid level and the only iron supplement I can manage to take)Colozal from 6/2001-7/2007 Asacol 8/2000 -5/2001 no effect - (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) dx 9/2007 with FSGS - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV bi-weekly for now (re-evaluated every 16 weeks)
- Allergies - Zyrtec 10mg  - skin hives when exposed to water (not kidding)(haven't been tested officially but pine alergy is also suspected)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 7/11/2008 9:54 AM (GMT -6)   
I second what PeanutMom said.. If you are still wishing to try birth control later, I would definitely ask about the NuvaRing. I've been using it for almost two years now and it's wonderful. It's a vaginal ring that you keep in for three weeks and you really can't feel it at all, and then you take it out on the fourth week to have your period. Previously I was on OrthoTriCyclen and then Yasmin and both pills caused my face to break out and my colitis to flare and made me all sorts of moody. But that part could just have been because I was a teenager, haha. Another thing to think about is if you're on the pill and flaring, there's always the chance that you might not absorb the pill because you are going to the bathroom too much and you basically expel it before it can be effective.


Anyway, I think if you've been on prednisone for almost four weeks now at that high of a dose and it hasn't done anything, then you might want to talk to your doctor about something like Imuran/6-MP as a previous poster suggested; prednisone should by no means ever be used as a long term maintenance drug.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar region of the spine from long term prednisone use. 

Currently unmedicated and flaring :(
Waiting for my appointment with the new GI on July 18th. Insurance finally kicked in, hooray!

 
 
 


MNBeachgal
Veteran Member


Date Joined Jun 2008
Total Posts : 867
   Posted 7/11/2008 10:27 AM (GMT -6)   
I've actually found that birth control pills help keep my UC under control. I was constantly getting flare-ups during my period. I started taking my birth control pills 4 packs in a row without a week off and magic - the flare-ups stopped. I had remission for about 6 years then only a few small flares after that.
I've been taking the birth control pills this way for over 10 years now.
Just now I'm having a large flare (it was bound to happen at some point) and it did start during the week of my period.

For me, I really think taking the pills helps keep your hormones in a contstant state of balance, therefore doesn't upset the UC as much. Might not be the same for everybody, but that's how it seems to work for me.

jandgmom
New Member


Date Joined Jul 2008
Total Posts : 9
   Posted 7/11/2008 8:00 PM (GMT -6)   
THANK YOU everyone for your immediate and thoughtful replies.  I have already learned some things.  I didn't realize that Flagyl can cause diarrhea or that Prednisone loses its effect after a while.  That's not good news :(  It worked so good and so fast before that I just expected it to do the same thing and it didn't.  Plus, Flagyl is leaving an AWFUL taste in my mouth!  To answer some previous questions, I'm not sure about my hormone levels.  The labwork at the hospital came back fine - just a BMP, Liver, Lipase and CBC w/ Diff.  I'm surprised everything came back normal considering the meds and blood loss.  I will say I haven't lost my appetite through all of this.  I'm just awaiting the moon face.  It hasn't popped out yet, but the stomach is starting to get bloated - so any day now. 
 
I did stop the birth control about three weeks ago after being on it only little over a month.  When I went to the ER, I was hoping something would have been done interveneoulsy since I was there.  I'm jumping around in this paragraph, but I just wanted to highlight somethings everyone said.  I do have to be more compliant with the enemas.  I just get this very nauseated feeling after administering them where I have to lay still for about 10 minutes.  But, what I'm noticing on this thread is that they really work for proctosigmoiditis. 
 
Can I ask how bad it has to get to be put on an immunosuppressant?  Does anyone know how long I would be kept at 60mg of Prednisone?  I'm sending my husband to get a vasectomy because pregnancy just exasterbates my colitis.  But, I have heard positive things about the NuvoRing.  Thank you everyone for your replies and taking the time to respond.
 
Megan
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