HealingWell
Search Close Search
☰

Am I really getting better?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/27/2016 2:14 PM (GMT 0)
So I've managed to stop taking pred on Sunday. Still alive. Still had watery bm, once per day, no blood. Also, urgency and sensitivity are still there. On Sunday, feeling discouraged, started taking something called Enterosgel. Its an absorbent medication I know from Europe. This helped a little, and next morning bm was mushy.

Had an appointment with the GI yesterday. He kept saying that I'm doing just fine and it takes time. Said Im being treated from distal colitis (don't know why, as the symptoms seem to indicate otherwise, us I would think). Said to keep taking 2 Lialda for another week, after that increase to 3. He is afraid Lialda will make me worse. Also said to keep doing Canasa and corticosteroid suppository. And didn't mind me taking Enterosgel. Asked for Rowasa, he said no.

I have an appointment with another GI tomorrow. Will see what he tells me. Also am planning to start VSL#3.
Posted 9/27/2016 2:31 PM (GMT 0)
IT will be good to get a 2nd opinion on how likely Lialda is to make you worse. This is not unheard of, but is supposed to be uncommon.
Posted 9/27/2016 3:56 PM (GMT 0)
Am I really getting better? If you're asking then there hasn't been big improvements toward that end. Getting off of prednisone is a start, however, I'd wait a couple of weeks before calling that a victory (symptoms can creep back shortly after reaching zero mgs of pred). Overall, you have a ways to go, and insisting on higher doses of mesalamine oral and insist on rectal route will help you heal faster and more completely.
Posted 9/27/2016 4:17 PM (GMT 0)
I am also wondering if the doc should have scheduled a colonoscopy. He said he wants to do it late. Is doing a colonoscopy safe during a flare? I would think it would make sense to see what is the extent of the inflammation to treat it properly...
Posted 9/27/2016 4:21 PM (GMT 0)
Yes, colonoscopies are available as diagnostic tools during flares to answer how severe? And how far? Perhaps it'd convince your doctor that you do need a stronger medication and doses.
Posted 9/27/2016 5:08 PM (GMT 0)
You really need to be on the retention enemas.
Your doc should at least up the oral to 3600mg daily.

You are improving based on the fact that you are having only one bm daily.
Basically, you're flaring still....

I agree to see another doctor or push for the enemas saying you want to try them.
Even steroid enemas could be an option, but the mesalamine would be better.

q
Posted 9/28/2016 4:45 PM (GMT 0)
Saw a new GI today. He is affiliated with a hospital that has an IBD center... Hope this is a good thing. He said to up lialda to 4. Also, had me schedule a colonoscopy in 2 weeks. Started bringing up other classes of meds, which made me cry lol Does his plan seem reasonable?

Would like to note that this is a teaching hospital. A student asked me all the questions and relayed the info to the doc. Im not sure how I feel about this...
Posted 9/28/2016 4:55 PM (GMT 0)
if he talks about other classes of meds before getting you on some kind of enema, then he is a dumbass - affiliated or not !
Posted 9/28/2016 4:56 PM (GMT 0)
And did you ask about the rectal meds?
q
Posted 9/28/2016 5:58 PM (GMT 0)
Prescribing 4 lialda is good, agreed that you should request the enema. I've never worked with a practice associated with a teaching environment. Some have and like it. Certainly different.
Posted 9/28/2016 6:02 PM (GMT 0)
Thank you all for replying! I did ask about the enemas, he said he cannot give them to me until he knows the extent of the inflammation.
Posted 9/28/2016 6:07 PM (GMT 0)
Ah, your scope is in 2 weeks and depending on what they see, they'll prescribe the enema. I believe before you said you had transverse colon inflammation (inflammation that the enema wouldn't reach), and very limited rectal inflammation. That makes sense, I'd hardly call them dumbasses. Rather they sound like they have a good approach.

If they see that inflammation pattern again, I'd ask about crohn's-colitis, indeterminate-colitis, or crohns. It's certainly atypical for UC. I'd ask if it's patchy with skip lesions (healthy areas, between inflamed).
Posted 9/28/2016 6:29 PM (GMT 0)
ipoop, when initially diagnosed I had pancolitis. Two subsequent times I had the scope done, only 15 to 30 centimeters were inflamed. I think this would be consistent with UC.
Posted 10/2/2016 1:56 PM (GMT 0)
So, I think i am doing a little better. Stopped taking prednisone a week ago. Right now, my bms is once per day, no blood, formed but still very soft. I attribute this to the Enterosgel, the absorbent I am taking. I also started taking 4 lialda. Also, gas can come out when im standing up, yey! lol Compared to how I was a week ago, this is a progress. Not sure what will happen when I stop taking enterosgel in a week... will see.
Posted 10/2/2016 3:45 PM (GMT 0)
Super interested in this Enterosgel. Can you get it in the US?
Posted 10/2/2016 4:00 PM (GMT 0)
Yes, it can be ordered online. It's a very popular medicines, nonprescription, in the country im from. It really helps bulk up bms. My local gi said to keep taking it for two weeks. It kind of works like peptobismol.
Posted 10/2/2016 10:41 PM (GMT 0)
A week without prednisone, 1 bm, and passing gas safety are all very positive and good signs. Congrats.
Posted 10/4/2016 1:09 PM (GMT 0)
So, I am feeling better, but....for the past two days I noticed a little spot of red.... Just one each day. They were really tiny, few millimeters. Kind of looked like red over a white, unabsorbed Canasa. If this was blood, it was probably coming from somewhere close to the end, because of the color. I don't know why this would be happening, since I am doing one Canasa and one corticosteroid supp per day. I am hoping that this is just me overanalyzing, it could just be food... I have some Rowasa left from some time ago. im thinking to try it tonight to see what happens.

Do you guys think I'm analyzing it too much?
Posted 10/4/2016 2:46 PM (GMT 0)
Yes, overanalyzing a bit too much as there's many things that we eat that can give the appearance of specs, flecks or embedded blood within stool: undigested bits of fruit skins, bits of red/orange medicine husks, food dye, various seeds and many other things. So there's lots of chance for false alarm.

When most gastroenterologist's ask if you seen blood lately, they are looking for very specific things including:
-blood on tp after wiping
-blood drops or slicks on the surface of the toilet water
-blood streaks down the side of your stool
(All big, jump out at you things)

Once you're talking red specs, flecks, or red colored things embedded within stool it becomes highly inaccurate, prone to error, etc. As normal people would see those things too (if they ever cared to look closely as we do). While it's good to stay vigilant and aware of signs of worsening symptoms, we can tend to overanalyze and worry when we really shouldn't be.
Posted 10/4/2016 3:04 PM (GMT 0)
Thank you, this makes me feel better! I also noticed darker colored stripes. I have seen these before. they are not red at all, so I usually think these are just food related or have to do with Canasa. Does that seem correct?
Posted 10/4/2016 3:34 PM (GMT 0)
Food related.
Posted 10/4/2016 11:58 PM (GMT 0)
Just got my bloodwork results back. Inflammatory markers are normal, but low iron and vitamin d. Doc prescribed iron pill which I'm not going to take as I think I got UC from iron pills in the first place. As for vitamin d, this is interesting as I've heard that there is a connection with UC.
Posted 10/5/2016 8:20 PM (GMT 0)
Lialda alone got me out of my 1st and only flair, and it was a pretty bad one. Hope you continue to feel better!
Posted 10/5/2016 11:21 PM (GMT 0)
Yes, low iron and vitamin D are common with ulcerative colitis patients and can cause fatigue and hair loss. Try to boost those in your diet that's always better than pill-supplements. Certain foods are higher in iron and D content, pick some and add them into your daily meals. You can cook with iron skillets to add some extra iron to your meals.
Posted 10/5/2016 11:56 PM (GMT 0)
Sounds like you're getting better..yay! Yes I can relate (as most of us can) with overanalyzing your stool. I would still get on the enemas especially since UC starts in the rectum. Keeping that area calm is a necessity. You may not have to do it nightly but a few times a week could really help keep you in a good remission.

BTW, I am one of those people who can take 2 Lialda but anything higher causes me bad symptoms. I almost have an intolerance to higher doses only. Sounds like you don't have that problem, which is great...but want to let you know that so possibly what your Dr. meant.

Keep us posted on your scope and hope you continue to improve!
B
✚ New Topic ✚ Reply
12