Still bleeding since Jan. Advice?

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buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 5/4/2009 10:16 PM (GMT -6)   
I started my flare in January. Went on prednisone at 60 mg in Feb., upped the 6mp to 100 mg and the asacol to 12 pills. I started doing cortifoam two times a day about a month and a half ago. I am still bleeding, a lot. My doctor had tapered me down to 15 gradually but then brought me back up to 20 in hopes of controlling the bleeding. It didn't and his next thought was remicaide or surgery, both options I DO NOT LIKE. I am feeling much better than I did in the beginning of the flare. I am only going about 5 times a day (sometimes less) and it's not horrible when I'm in there. The bleeding is constant though and I need other ideas of what to do. Please help with any advise. I am also on carafate to "firm things up" and it helped a ton with the cramping.
Diagnosed when 13 and am now 25, female. Currently taking 100mg of 6mp, started at 60 mg of prednisone and now down to 30 mg, and 12 pills of asacol a day. I tried cortifoam for this flare and it didn't work. Previously I've tried all types of rectal meds but nothing ever helped. In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine. I was in a four year remission until the end of January.


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 5/5/2009 1:16 AM (GMT -6)   
Did you get colonoscopy. May be it is not UC flare up. It may be some infection. At times I used to get severe infection and metronidazole would help instead of Pred or Asacol. Even cortifoam was not effective during such infections. Please consult your doctors. Have a stool test done to rule out amoebises (spelling).
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 5/5/2009 1:29 AM (GMT -6)   
I'm in the same situation as you. Ive been bleeding continuously since Feb 6th and been hospitalized for two weeks during this time and was on IV hydrocortosol and then high dose oral pred, none of this stopped the bleeding (as it had done in previous flares) and even now in early May the bleeding is still going strong. Im worried all this bleeding is causing permanent structural damage in my intestine, which may never heal, and on top of the fact that it drains iron and protein etc from the body continuously. It doesn't seem to concern my GI as much as it does me strangely.

Anyway i think if you don't want surgery you really have only Remicade to try, or just try waiting it out another month or two if you think your body is up to it and see if it gets better on its own.

I myself have decided against Remicade as its not a cure and no guarantee of remission with it, and regardless it greatly reduces your immune system so surgery if it comes to that could have more complications with infection and healing etc.

I'm pretty much resigned to the fact that my current flare is the flare to end all flares and the one that puts me into surgery so im mentally preparing myself for this and have already visited a surgeon and talked about the procedure. I have been visiting sites like ucvlog.com and www.jpouch.net to get familiar with what i might have to go through. Perhaps you should mentally prepare yourself for surgery so its less of a mental adjustment if it indeed comes to that.
Male, 33yrs, Australia

Bowel problems started 04/03
Pan-colitis UC Diagnosed 08/07
Hospitalized Aug 05, Aug 07, Mar 09

Main Meds used: <del>3g</del> 4g Mesalazine (maintenance),
<del>60,50,40,30</del>,20mg Prednisone
6-MP (stopped due to liver toxicity)
150mg Imuran, (stopped due to rash)
400ml daily IV Hydrocosone (when in hospital)
2g Entocort enema (during flare-up),
4g Mesalazine Enema (medium term maintenance)

Foods I avoid: Alcohol, Chocolate, Muesli, McDonalds


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/5/2009 9:30 AM (GMT -6)   
You might look into going on a predigested liquid diet to allow the gut to rest and heal while still getting the nutrients you need. Combined with supplements to heal and reduce inflammation, that might do the trick. These types of diets have been found to be as effective as steroids in inducing remission. If you'd like to learn more, check out the book The IBD Remission Diet by Jini Patel Thompson.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/5/2009 10:31 AM (GMT -6)   
I am afraid I am in the same boat... I have a colonoscopy in 3 weeks - but I am afraid of the bad news I may be getting... I am bleeding after tapering off pred... I just started 30mg today from 20mg...hope it helps a bit... I will be getting a stool sample to check for infection - that could explain the bleeding since I have never bled this bad or long before....it is very concerning for me.

I am going to try 6mp and / or immuran, then Remicade....then I am out of options... Mentally I have not accepted surgery yet...not sure I will. I can live with the low quality of life - as long as I do not have displacia or any cancer, I am going to keep my colon as long as possible... It is my ultimate fear right now losing my colon...something that I may not be able to come to terms with....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Multivitamin.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 5/5/2009 12:22 PM (GMT -6)   
Unfortunately, I did have a colonoscopy early on to rule out any infection along with a stool sample. Both came back negative. I feel like surgery is not necessary b/c my overall symptoms have gotten better, I'm able to live my life mostly, I just still keep bleeding. Please keep posting any ideas!!!
Diagnosed when 13 and am now 25, female. Currently taking 100mg of 6mp, started at 60 mg of prednisone was down to 15 from slow taper and now back up to 20, and 12 pills of asacol a day. I was on cortifoam 2 times a day and am now going to start Canasa instead. I take Carafate 4 times a day for cramping and to firm up the "stuff."

Previously I've tried all types of rectal meds but nothing ever helped. In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine. I was in a four year remission until the end of January.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/5/2009 12:31 PM (GMT -6)   

about same situation here.  I just talked to my NP who is conferring with the doctor this afternoon about continuing 6 MP plus the 25mg. of prednisone.  My symptoms are so much better, I feel better, but still have mucous/blood/loose BM sometimes. The NP said as long as I have bleeding the ulcer is open and could easily spread further (it is 30 cm up left side) and I would be in "trouble" and needing surgery or ? I will avoid surgery at all costs until they say I have to have it to save my life.  But that is just me!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 5/5/2009 1:08 PM (GMT -6)   
I have no real advice but I was bleeding for well over a year straight. If your only symptom is bleeding, I don't think that is too bad, as long as it is not seriously heavy bleeding. If you have bleeding, D, urgency, cramping and you're running to the toilet, that's a real problem. I don't think you should consider surgery until you're ready. If you want to wait and try some other treatments, you should. You can have surgery any time. If you're losing tons of blood and feel like hell, you may want to consider it sooner than later. I have seen a lot of people here on Remicade that are doing incredibly well.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/5/2009 1:17 PM (GMT -6)   
     A few questions.  Where exactly are your ulcerations?  I have ulcerative proctitis and was hospitalized for ten days last year.  For most of my hospital stay I was fed through a PIC line.  When dischared I still was flaring but followed a strict low-residue diet.  I am not familiar with carafate, but I do know that anything which contains fiber is a big no no for me while flaring.  It makes my symptoms much, much worse.  If your ulcerations are confined mostly to the rectum, I would ask the doctor if you could switch from Asacol to Colazal.  Just suggestions.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 5/5/2009 1:31 PM (GMT -6)   
Can't remicade possibly cause infertility??
Diagnosed when 13 and am now 25, female. Currently taking 100mg of 6mp, started at 60 mg of prednisone was down to 15 from slow taper and now back up to 20, and 12 pills of asacol a day. I was on cortifoam 2 times a day and am now going to start Canasa instead. I take Carafate 4 times a day for cramping and to firm up the "stuff."

Previously I've tried all types of rectal meds but nothing ever helped. In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine. I was in a four year remission until the end of January.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16732
   Posted 5/5/2009 1:52 PM (GMT -6)   
I think I have seen people on here who are pregnant and on remicade but not too sure. I do know if I were planning to get pregnant, I wouldn't want to be on any major drugs but I guess if you don't have a choice, you don't have a choice. I personally never wanted any children so for me, it's not a decision I worry too much about. I do know I have seen people say that if you begin remicade, it's not a good idea to stop because it may not help you when you try to take it again. It is definitely something you need to think long and hard about if you're plannign to start a family. Are you married? Planning a family soon? If the inflammation doesn't stop, you may be in worse shape in a few years and not have any options besides remicade, humira and surgery. All of which may impair your ability to conceive. I don't know much about this, as I said, I've never intended on having kids. I hope you can find the answers to your questions and a solution to subside your inflammation. I've seen a lot of people say that pregnancy has caused them bad flares. You could always adopt or take some eggs so you can use a surrogate or something in the future.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/5/2009 2:24 PM (GMT -6)   
I haven't heard anything about Remicade causing infertility.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/5/2009 10:11 PM (GMT -6)   
If you are unsure, take your time to decide. I have bled daily and gone 8 time a day or more, for decades! That was my normal. And to look at me you would have thought I was very healthy.

I'm doing Remicade in hopes of experiencing what normal is. I don't worry about the risks, they are worth it. UC has disrupted my life long enough.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 5/6/2009 12:05 AM (GMT -6)   
buckeyeinchicago said...
I started my flare in January. Went on prednisone at 60 mg in Feb., upped the 6mp to 100 mg and the asacol to 12 pills. I started doing cortifoam two times a day about a month and a half ago. I am still bleeding, a lot. My doctor had tapered me down to 15 gradually but then brought me back up to 20 in hopes of controlling the bleeding. It didn't and his next thought was remicaide or surgery, both options I DO NOT LIKE. I am feeling much better than I did in the beginning of the flare. I am only going about 5 times a day (sometimes less) and it's not horrible when I'm in there. The bleeding is constant though and I need other ideas of what to do. Please help with any advise. I am also on carafate to "firm things up" and it helped a ton with the cramping.

Hi buckeyeinchicago
 
The best method of of stopping bleeding is doing Sheldon's vitamin E enema
 
 
 
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