Hydrocorisone enemas - advice and experiences please

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Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 9/26/2007 8:58 AM (GMT -7)   
since my bm's have jumped up to now 15 times a day since last week mostly blood and mucous and I have been on pred for two weeks, I contacted my GI and he is prescribing me hydrocortisone enemas.  I did the rowasa previously and those greatly helped me my since my uc is in the lower part of my rectum.
 
I just googled it and it does say to be careful if you have kidney disorder but looks like it is from the angle of high blood pressure causing kidney problems and not the same as MCD.  Will continue to look at today.
 
GI did talk to my nephrologist and says that maybe after I get MCD into remission can possibly try the mesalamine drugs again....maybe it is a coincidence, don't know if I want to ever chance that though. 
 
Also, GI having me do a stool sample to rule out possible infection, b/c pred is not helping my UC as of yet.
 
So I will be taking even more steriods.  Awesome!  Maybe i'll turn into the Hulk!
 
Thanks in advance!
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Red_34
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Date Joined Apr 2004
Total Posts : 23549
   Posted 9/26/2007 9:54 AM (GMT -7)   
I was on them for almost a year. They did help my symptoms greatly. You only get a small amount of steroid from these that actually enter your bloodstream but if taken long enough the amount in your body build up after time. So I don't think you will turn green yet in the near future - now if you take them longer then 6 months and you notice you're getting green and hairy.........well you might want to reconsider talking to your GI ;)
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Old Hat
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Date Joined Feb 2007
Total Posts : 5135
   Posted 9/26/2007 10:16 AM (GMT -7)   
If the active UC is in the lower part of your rectum, ask GI if you can try Cortofoam (10% steroid rectal foam) instead of the hydrocortisone enemas. Dr. Daniel Present, 1 of the foremost IBD gastros in the U.S., recommends use of Cortifoam 2X daily for 7-10 days to "jump-start" healing in the rectum before proceeding to retention enemas. There are fewer chances of side effects with this med because very little is absorbed systemically. I would think that's also important since you're already taking 60 mgs of oral steroid daily, which is the maximum permissible daily dose, according to my gastro, who subspecializes in IBD treatment. Actually, if you are anywhere near NYC, you might pursue a consultation with Dr. Present. If any gastro could get to the heart of your problem, he would likely be the one. 15 bms daily while on 60 mg Pred is too much! I think your situation warrants the attention of a very experienced/saavy practitioner in IBD gastroenterology. Present is also a professor at CUNY Medical School-- he really knows his stuff. I really doubt that he would handle your case in the way it is now being managed.  / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/26/2007 11:23 AM (GMT -7)   
thanks Old Hat, I will call back today. I am near Boston about 1 hour and am seriously considering going to the chron's & colitis center there. I should start looking into Dr's. there now so I can get an appt (my GI is booked thru Nov, so those are probably the same).

He said he was going to do some reading about all the stuff I have going on........doesn't sound too good, eh?

Old Hat - what would you do in my situation about the mesalamine drugs? I don't know if I should even consider ever trying them again. I don't think there is any test that can say for sure, I think that I would have to try them again and have them monitor my urine (that's what GI suggested). Would you take that chance? I know I have to make my own decisions (in the future) but I am curious to have your view point b/c of all the other drugs out there, if there is a chance the mesalamine would be okay for me.....I just don't know if it's worth it.
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 9/26/2007 2:18 PM (GMT -7)   
At this point I don't think your main focus should be on 5-ASA drug questions. It should be on connecting with an experienced IBD subspecialist gastro. If you are within an hour's reach of Boston, then definitely look into one there ASAP. It doesn't make sense to depend on this guy who says he's going to "read up" on your kind of problem: that's a pretty outrageous statement to make! He should not be experimenting or throwing the whole medicine chest at you. A 31 yr-old woman with kidney complications needs more reliable treatment than he seems capable of giving. There have been threads on this site in the spring where some members mentioned Boston IBD gastros. One who is also an educator/researcher there is Sonia Friedmann, listed on WecareinIBD.org Website. It takes a doctor with that level of expertise to sort out complicated IBD problems. You deserve better care than you've been getting! I would not think of staying on 60 mg daily Pred indefinitely, nor would my gastro put a patient on it w/o an exit strategy. Take care-- we only get one body in this life. / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 9/26/2007 2:45 PM (GMT -7)   
FWIW, Beth, I agree wholeheartedly witheverything Old Hat has said here. From my perspective as a 51-year old woman (old enough to be your mom), if you were my child, I would ABSOLUTELY INSIST on getting with a doctor who will not do any further harm to you, your colon, or your kidneys. And I would take you to Boston myself, if that's what it took. You don't want to lose your colon -- at least not prematurely -- and you surely don't want to jeopardize your kidneys!

That said, I have been on the hydrocortisone enemas and they were absolutely REMARKABLE in stopping a flare dead in its tracks. And that first day, I had so much energy -- it was incredible. They continued to keep the flare in remission, but the energy boost dwindled shortly thereafter.

Wish I was closer. I'd drive you to Boston myself! Please seek out a more competent, more informed healthcare provider, Beth.

Mitz
Sporadic proctitis since about 1985. Mother had UC, then J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Prednisone, two courses of Flagyl, then Vancomycin finally got rid of it. Symptomatic with UC after that.
Colonoscopy in 2001 dx'd left-sided UC. Was pretty darn ill at that time. Treated with prednisone, Rowasa, Asacol. Asacol not working so switched to Imuran. Three small flares since in 2002, 2005, and 2007.
Gall bladder attack 6/13; ultrasound showed stones; surgery before end of 2007.
100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression) daily.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/26/2007 3:15 PM (GMT -7)   
Beth- I just saw an awesome doctor at Beth Israel Deaconess in Boston- Dr. Mark Peppercorn. He's the head of the GI Department at the hospital & a Harvard Medical Professor. I went to him for a 2nd opinion consult- my own GI recommended him. It went so well.... For me, he just basically backed up what my own GI has been doing, but it was nice to hear it from him. We spent almost 2 hours going over my history, he did an exam, & we discussed any & all treatment options- everything from surgery to aloe vera juice! I have never met with a more thorough guy. He only sees peole who have a confirmed diagnosis. My GI also recommended Dr. Sands at Mass. General, but he didn't have any appointments until December. Either of those 2 doctors have been highly recommended, not only by my GI but by other people on boards I've come across. Definitely call- you have nothing to lose & everything to gain!

PS- oh yeah, I've used the hydrocortisone enemas too- when I first started to flare on Remicade I used one nightly to try to stave it off. I was able to retain them ok for about a week or so, all the while my symptoms getting slowly more severe. Then I just was not able to hold them in any longer. I've used all kinds of enemas for UC, & that's generally how it goes- once the inflammation reaches a certain point, I just can't hold them in. So I usually stop using 'em after 3-4 nights of hopping right onto the toilet after I insert it. I know a lot of people have had great luck with rectal meds, but I'm not one of them.


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day

Post Edited (Eva Lou) : 9/26/2007 4:22:55 PM (GMT-6)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/26/2007 3:21 PM (GMT -7)   
Thank you very much Old Hat & Mitz for your advice, I am going to start to look for a new Dr. I have a friend who works at MA General and also, her father goes to the Chrons and Colitis center in Boston as of recently and he has had UC for a long time and he is on immuran right now.

I had talked to one of my Aunts about going into Boston and she is near to the city and very familiar with the city and she offered to go in with me. I'll drive and have her come with me so that way I can get used to doing it myself. With the 'big dig' that has been going on for 10 years and the poor labeling of streets it can be such a nightmare to drive.

GI's plan for me was the prednisone for now and then talk in Nov as I am tapering to discuss exit strategy. You are right, I don't want to be his guinea pig.
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/26/2007 3:25 PM (GMT -7)   
Thanks Eva!! I was responding to the other posts before yours was up. I am going to check out all the Doc's.

I know this is stupid but I how do I get a 2nd opinion consult and get my HMO to pay for it. Every time I call my HMO I don't know if they give the right info or not (I have BCBS) and they told me my copay for my biopsy was $250 but I just got the bill and it is $20.67 (much better).

I have had a PPO until a two years ago when it became so much more expensive than the HMO and now it is really high priced. I guess I will just call my primary tomorrow and tell her that is what I want and if she wont do it, I'll find another primary that will.
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/26/2007 4:21 PM (GMT -7)   
I have an HMO too, Harvard Pilgrim. I know in my schedule of benefits it tells you what's covered & what's not- I'm pretty sure all 2nd opinion consults are covered in full, but you have to pay the office visit co-pay. I'd call your insurer & tell them what you want to do, tell them who you want to see, & if he's in their network you should be all set. That's another good thing about the big guys in Boston- they seem to be in EVERY insurance network! And your own GI or primary care doctor can give you a referral for a 2nd opinion consult if they have to. I did have to get a referral from my primary care doctor, come to think of it, but lucky for me he's really easygoing with the referrals. I just had to call his office & they gave me the number. Your clueless insurance customer service rep. probably figured a biopsy was like a day surgery procedure, giving you that high a co-pay figure! Talk to a supervisor if they seem unsure or anything- you wouldn't believe the hoops I jumped thru with Harvard Pilgrim just verifying that remicade was covered in full! And it is, although about 6 "member service reps" told me it wasn't. Which probably sent my stress thru the roof, causing the huge flare! eyes
diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day

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