Still having alot of problems

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bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/18/2008 6:02 AM (GMT -6)   
Lately I've still been having alot of problems. The worst of it is gone but I'm still not near 100% has my GI says I am. I still have anal leakage, Cramping, bloody stools and they smell like a odd chemical. My doctor says the anal leakage is easy to deal with but in reality when you have to goto the bathroom forty times a day to wipe isn't...Are there any other options for me? The only other GI in my area is my current GI's brother so I can't really switch...And the nearest from there is a five hour drive.

I'm on prednisone still, 25mg a week and my doctor wants me to stay on that. I don't know why I cannot stand it I get so many side effects from it already I'm ready to just quit it cold turkey.

I've been on methotrexe for 12 weeks as well, And lately in the summer days I've noticed at night I've been getting very very very dizzy. My pharmacist this last visit when I went to pick up my new vial said to stay out of the sun, When I asked why she just said cause it's not good for you on this medication. So could that be the reason?

I'm also on asacol (8x400mg daily) and prozac.

A few questions as well, Can I take Beno while having this? My GI said not to take anything such as pepto bismol cause it stops the natural movement of the colon and I may clog and rupture because of it.

Can anyone suggest any options for me? I really need it urgently, School starts in a few weeks and I honestly don't think I'm ready to go back (I was given a doctors note to leave for the rest of the year in march because of my UC) And I'm still having alot of problems :-/...Any help thanks.

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/18/2008 6:32 AM (GMT -6)   
I have trouble believing there's not another GI except for 4 o5 hours away... if you have hospitals.. you have more GIs.
Diagnosed>
<FONT color=#b0e0b0>Medications</B>

Lialda - 4 pills in the morning w/ food.
Steroid Enemas


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/18/2008 6:44 AM (GMT -6)   
I have on hospital in my area, I live in a very rural area :-/ There are only two GI's at the hospital here and there brothers so I cannot really switch...

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/18/2008 6:45 AM (GMT -6)   
man.. that sucks!

move? LOL jk
Diagnosed>
<FONT color=#b0e0b0>Medications</B>

Lialda - 4 pills in the morning w/ food.
Steroid Enemas


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 8/18/2008 12:52 PM (GMT -6)   
Hi...have you tried any rectal medications?

You could consider to add a fibre supplement to help bulk up the "stuff" in the colon...hopefully slowing down some of the bms.

You don't have a fistula...do you?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/21/2008 10:37 PM (GMT -6)   
I haven't tried any rectal medications at all.

I find fiber gives me really bad cramping, My doctor said it was cause your body doesn't digest it and to try to avoid it.

I don't believe I have a fistula. How would I find something like that out?

Thanks for the reply as well.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 8/21/2008 11:45 PM (GMT -6)   
You could call the doc to get you on a rectal medication....that should help some of the rectal symptoms while on pred.

You should be checked out from the doc to enquire about the leakage.
Is it mucusy?

The next thing...you could try probiotics.

How is your diet? what are you eating on a daily basis?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/21/2008 11:54 PM (GMT -6)   
It's normal for fibre to give you cramping, bloating, gas, this is normal and even happens to healthy people, once your system adjusts (took mine 3 months) it's well worth it, you know what they say, no pain, no gain...I'm talking fibre supplements recommended by my GI (who happens to be in the city and I live in the country and we only have one hosptial with only one GI who sees people on an emergency basis only, not regular patients like in the city...another "hard to believe" but true).
 
Always start with a small amount of fibre and slowly increase if necessary and drink plenty of water with it.

Maybe you should see your GI's brother if he's telling you that about fibre, fibre is infact digested by the body, fruits and veggies are fibre and are more easily digested than the processed garbage out there that people are filling up on. Infact, avoiding fibre is about the worst thing anyone (unless you have crohn's and issues with strictures, but even then, low fibre is still necessary) can do is avoid fibre all together.

Fibre helps with either C or D, helps sweep the bowels clean of bacteria, helps keep the bowels functioning properly and IBDers need all the help they can get with that.

Fistulas are mainly related to crohn's disease not UC, you'd find out if you have one by having your doctor (or his brother instead maybe) take a look.

If you have inflammation in your rectom, you need rectal meds for sure... DO NOT QUIT PREDNISONE cold turkey, or your adrenal glands will go all whacky on you, it's not a safe thing to ever do when taking prednisone.

Honestly, this is your health...if you are not comfortable with your current GI then by all means you have the right (without feeling uncomfortable) about switching (brother or not), besides the fact that maybe the other GI isn't as good as the one you're currently seeing, if that turns out to be the case then head to the nearest city for a new GI, it's a pain in the ass of course, but so is having IBD so you'll get used to alot of pain in the asses.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 8/21/2008 11:57 PM (GMT -6)   
shocked   smilewinkgrin
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/22/2008 12:07 AM (GMT -6)   
Right now my diet is really random, Some days it will be something like mac n cheese for the whole day. Others I'll eat alot better. Really spuratic for me. For the leakage there is a bit of mucus but it's mainly stool. What is a "probiotic" ?

@Pb4,

How would be a good way to start on fibre? Pills or something like all-bran?

Also since I was born I have had a anal fissure, I seen a surgeon about it a few years back and he did mention that it would be best to fix it fast, Because they tend to tunnel into you and might hit your colon. I'm starting to think that may of happened and could be causing the leakage as well? I spoke to my family doctor about it the other week but he said it's best to leave it along cause surgery back there may flare it up even worse (This is the same doctor who wouldn't give me anti biotics for a infected cut I had on my arm, Ended up in the hospital for two weeks and ended up needing it to be cut open and drained and re stiched)

Thanks again for the replies guys

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2008 12:14 AM (GMT -6)   
Probiotics are live microorganisms (in most cases, bacteria) that are similar to beneficial microorganisms found in the human gut. They are also called "friendly bacteria" or "good bacteria."

Yes try fibre pills, but only take one/day with plenty of water, and even if you experiance gas/bloating, ect stick with it, it will pass (remember, took me 3 months to adjust) and only after your system has adjusted no more gas, bloating and you still don't notice improvements from D, then increase every other day to 2 pills until you get over the initial adjustment period again...always drink tons of water with it (lots of water is another excellent source of cleansing toxins out of your system too).

about the advice you've gotten on the anal fissure (gosh I wish I could give you a hug, I have alot of horrid experiances with anal issues from my crohn's) you reeeeeeeeaaaaalllllllly need to see another GI, you cannot be expected to continue walking around with this fissure that clearly is not healing.

What have you been doing to take care of your fissure?
My bum is broken....there's a big crack down the middle of it! LOL :)


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/22/2008 12:18 AM (GMT -6)   
@pb4, I haven't been doing anything to take care of the fissure. Just leaving it there and one day hoping to get it closed up.

If the gas and bloating gets really bad while taking fibre is it safe to take something like beno with it?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2008 12:28 AM (GMT -6)   
I never took anything *mind you it's because I'm used to suffering with pain so I think I've toughend up over my 17 yrs of having IBD* you could try rolaids chewables, but remember, it's normal for the gas, bloating, ect when your system is adjusting to it.

for the fissure, at home try soaking in as hot a tub you can handle with tons of epsom salt (this will NOT cause any pain from the salt, it's not like table salt, and do not use table salt ever).

Then gently pat the area dry and gently apply extra virgine olive oil to the fissure, do this everyday, it could take weeks or months (not likely, though it does depend on how deep you fissure is)...how deep would you guess it to be?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/22/2008 12:30 AM (GMT -6)   
@pb4, I'm not sure how big it would be. I'm 17 and I've had it since birth. So I'm not sure how fast something like that would spread.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2008 12:34 AM (GMT -6)   
Oh goodness....how deep do you think it is approximately?
My bum is broken....there's a big crack down the middle of it! LOL :)


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/22/2008 12:35 AM (GMT -6)   
I wouldn't really know. Tomorrow I think I will ask my doctor about it again. Maybe book another appointment with the surgeon I seen about it before.

Think it could cause that many problems?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2008 12:42 AM (GMT -6)   
It's hard to say if it's the cause of the many problems you're having, I mean, I don't really know, but what I do know is that it's not normal to have a fissure for that long (especially since birth) and to not have it treated at some point (well before now being that you're already 17), this frustrates me, of course I don't know you or your life/situation but I cannot imagine one having a serious problem like that and it not being tended to ASAP.

I don't think it's a good idea to let it go any longer with no treatment either by your doc or at home by you (as I mentioned the epsom salt bath and exrta virgine olive oil).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 8/22/2008 1:52 AM (GMT -6)   
Well, I'll ask my doctor later today about it.

Thanks for replying :)

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2008 11:26 AM (GMT -6)   
Maybe hold off on the fibre supplements to bulk up your stools until you've got your fissure healed. Generally you still have to ingest fibre when dealing with a fissure but at the same time using a stool softner since you don't want to make the fissure worse from a larger/harder stool comming out.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 8/22/2008 12:19 PM (GMT -6)   
To bb224....I have ulcerative proctitis and usually adhere to a low residue diet when in a flare.  However, my nutritionist suggest I take 1T daily  of GROUND flax seed. I use Bob's Red Mill Organic 100% whole ground golden Flaxseed Meal.  You can purchase it in your local superstore, at least I did.  The Health food stores usually rip you off on the cost.  I place 1T on top of my rice krispies every morning, tastes good.  I use Silk instead of milk as I am lactose intolerant.  My friend who also suffers from UC swears by flaxseed oil capsules, but I am afraid to go that route just yet as I am still bleeding (in a flare since April and in hospital for ten days in May).  By the way, I have been reading your posts.  I would sure try and find another GI if I were you.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/22/2008 12:42 PM (GMT -6)   
If you can't find acceptable care where you are, you ought to look at traveling to the nearest metrpolitan area, no matter the distance. No one should settle for the treatment you've received. Any GI worth his/her salt wouldn't describe the symptoms you're still having as being "100 percent."
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 

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