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Which oh which enema to take?

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Ulcerative Colitis
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Posted 3/17/2013 1:36 PM (GMT 0)
Hi. I started taking meds for my moderate flare about 5 weeks ago. Started with Lialda/Prednisone. Lialda made me sick and the prednisone put me in a very bad mental space. So I was quickly tapered.

They switched me to Colazal and Rowasa and Canasa. This is all with my first and now old GI. I was on this regimen for 3 weeks and things started to go down hill. Increased blood, urgency and frequency.

I switched to a new GI and was switched from Rowasa nightly/Canasa daily to Hydrocortisone nightly/Cortifoam daily a week ago. Still taking the Colazal. The first 3 days on this went great. Everything started to get better - 1-2 BM, no blood. The past few days however there has been an increase in bright red blood. On the stool and in the toilet. Still only going 1-2 times and stool is formed but there is a good amount of blood now.

Can anyone give me insight? Blood seems to be the hardest thing for me to stop. I was thinking of alternating at night between the Hydro and Rowasa nightly. Maybe the steroid e is too much for my body every night?

Thanks for any input!
Posted 3/17/2013 2:11 PM (GMT 0)
Hmmm. You seem to have bleeding on both types of enema so maybe it's not the enema at fault since they are different, one is a mesalamine and the other a steroid.

Have you thought about reducing fiber (especially insoluble fiber) in your diet? IOW taking scratchy foods out such as raw veggies and nuts? My bleeding stopped when I removed gluten (although I had to remove other foods to get to remission). Think about that also.

Some doctors recommend giving your colon a "rest" with low residue foods which is another way of saying what I did above. Drink lots of liquids, chicken broth, veggie juices, and foods that don't put a lot of strain on your colon. Lots of us here agree with that (although I again prefer gluten-free with that).

I personally would continue with the enemas unless you feel they are causing the problem which is rare but sometimes happens if someone is sensitive to mesalamine. Rowasa also comes in a "sulfa free" version called "Rowasa sf". Perhaps you should try it.

Good luck.
Posted 3/17/2013 2:34 PM (GMT 0)
Thanks for replying! I went gluten free, soy free at diagnosis and have always been dairy free.

I've been staying away from raw fruits and veggies til i can get this under control. Tho I do make smoothies in a vitamix but they are completely liquid. Could that be an issue?

I also take psyllium husk powder at night but was told that its mainly soluable fiber. Other than that I mainly eat easy on my gut foods.

The doctor wants me to try entocort but I was hoping the steroid enemies would do the trick first.
Posted 3/17/2013 6:00 PM (GMT 0)
Well you seem to be pro-active already on what I suggested. Try taking the psyllium husk away for a week or 2 and see if anything changes for the better. The husk has more insoluble fiber than the seed powder does but many people are fine with the husk. I take Citrucel, tried psyllium only briefly but my gut preferred Citrucel. Find out what your gut prefers by testing.

Sometimes the gut is just whacko crazy. When mine is upset I go back to what has always worked for me which is chicken broth, well cooked carrots, veggie juice and mesalamine enemas until it calms down. You need to find your "go to" foods and meds (I know, "duh"). I didn't know how to get my colon calmed down for many years. We didn't get this way overnight and don't get better overnight. I used to count my good days one by one, sometimes just by the hour. Hope you can get some good days soon.
Posted 3/17/2013 6:20 PM (GMT 0)
Since you're improving...meaning that your bms have slowed down, and I'm assuming are more formed...you'll have to be patient with the bleeding and allowing the area to heal.

It's going to happen in incriments, based on degrees of inflammation.


I would, at this point, see if you can get back on the mesalamine enemas, or at the very least use the Canasa during the day and the steroid enema at night.

How much psyllium husk are you using and when? It still will soften the stool going through the rectum. The fact that you're still bleeding is more related to the inflammation.

I wouldn't change too much at this point....5 weeks of a flare isn't a long time, and healing can take months.

You might be wiser to ask the doc for UCeris rather than the Entocort oral...since it's new.

Are you still having urgency?

Hang tough...you are improving...it just takes a while.

q
Posted 3/17/2013 7:13 PM (GMT 0)
Hi Quincy. I've actually been flaring since November when I was diagnosed. I started meds 5 weeks ago when I stopped breastfeeding my son. Got UC during my pregnancy. Had no idea what the disease was when I was diagnosed and I no longer see that GI for numerous reasons.

I take 1.5 tsp of the psyllium husk before bed. I'm going to switch on and off between the steroid e and rowasa and hope things still improve.

My GI is calling me tomorrow with blood test results and had planned on asking about uceris.

I have urgency for my first BM in the morning. I assumed its because of the enema. But overall it seems to be improving. I still cramp and have some pressure around my rectum.

Is it common in this disease to have days of no blood and then days of a good amount of blood? I'm still trying to wrap my head around what progress is considered. I get so discouraged when I have a decent day and 4 bad. It makes me think the meds aren't working.

Post Edited (TotesMagotes) : 3/17/2013 1:16:10 PM (GMT-6)

Posted 3/17/2013 7:26 PM (GMT 0)
Remember that your hormones are now up and down....that will highly influence your UC flaring. So, that could be a huge impact on the ups and downs with your flare.

but, as you heal...it's the norm as well...

The cramping in the rectum is normal...it says it's flaring. When it's limited, as yours seems to be..that can take a while to improve, depending on the degree of inflammation and again...your hormones.

The enema pressure in the rectum will create some urgency if you're already having to go...but again...it's normal while flaring. I always saw that as a way to get it over with...just heed the signals and head for the bathroom.

Take the psyllium with your meals...not alone. Do you have pure psyllium or is it in a flavoured base? Because, some are mixed with artificial sweeteners that can cause more discomfort.

Try not to overthink all of this....the process of healing limited UC is a frustrating one. If you are loyal to your meds, give them a chance to work.

If you do too many knee-jerk changes, you'll never realise that something is actually working but haven't given it enough time to do so.

What probiotics are you using?

q
Posted 3/17/2013 7:44 PM (GMT 0)
Thank you for your insight and advice. It's been such a struggle. Now on top of it all I'm losing my hair in handfuls which I'm assuming is because of the prednisone, flare itself, post partum. It's so disheartening.

The psyllium is just plain psyllium. I try not to consume anything artificial if I can. I will start taking it at dinner. I also just ordered psyllium seed powder because I was told it has more soluble fiber.

Probiotics I'm taking are renew life 80 billion. My GI suggested align but I felt that wasn't any where near enough to get good bacteria in there.

I'm really grateful for this forum. I know no one with this disease.
Posted 3/18/2013 1:41 AM (GMT 0)
Hi...yes, it's disheartening where hormones create such wacky issues, and you've got the triple whammy.

Definitely take the fibre supplement with supper to start. Are you mixing it in with water?

Eventually you can add another one to another meal...

Take the probiotic at bedtime...it's better on a more empty digestive tract.

Regarding the hairloss...a product such as Bosley is good. They have a complete wet line, style products and hairloss treatments. Some of them do contain minoxidil, but they are specific.
I have a few clients who use the shampoo/conditioner/leave in treatments. Positive results from the useage.

One positive...if you are seeing the fallen hair, they don't leave until there's another hair pushing it out.
Taking a multi B vitamin supplement is a good thing as well rather than just the biotin.

I hope things get back on track soon for you...but it does take time.

It's good you found this forum...hopefully, with the support here, you also have it in family and friends.

q
Posted 3/18/2013 3:56 PM (GMT 0)
Ah yes my perfect storm as I refer to it. I'm looking forward to just having UC issues and no post partum stuff. Who would even think that was something to look forward to?!

I take the psyllium with 8 oz. of water.

Thanks for the positive outlook on the hairloss. With the amount I'm losing there will be a boatload of new ones coming in :) I'll have half long hair and half a pixie cut by summer at this rate. As you can tell I'm trying to keep a  sense of humor about all this.

My family and friends are as supportive as they can be without really understanding what this is. My husband and my baby boy keep my head up.

I'm gonna stick to one road of treatment and see if it works without switching things up. The hardest thing I've found is not knowing what is doing what, what is helping, what is not working. I want to get patience tattooed on my forehead.

Posted 3/18/2013 8:03 PM (GMT 0)
lol...well, at least get it on your butt! The first two years, "patience" is what my doc continued to tell me through all my tears and anxiety. 24 years later, it did work. Although, my patience for flares now have waned, I never wait to increase meds...and as everyone else, hope to feel better asap.

Regarding hair...get it cut now. Better than losing long hairs that can get be reminders of what's leaving. You'll start anew....like a make-over. At least shoulder-length if it's longer...make sure you wash it often to keep the scalp stimulated.
Remember, it's normal to lose about 100 hair a day...but on a thinning head, it's like 1000.

Hope some of the changes will help you get back on track.

Consider the mesalalmine for night as well....

smile,
q
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