HealingWell
Search Close Search
☰

I just don't know what's going on

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/27/2015 11:33 PM (GMT 0)
I'm feeling so disheartened and scared right now. For the past week or so I've had this persistent dull aching. It's hard to describe "where" I feel it, but it's definitely lower down. It makes me feel like my BMs are incomplete, and then I end up going more often. It's kind of like a weird sense of heaviness down there. I was hoping it would go away, but it hasn't yet. I'm scared to call my doctor because I know he'll tell me I need to start a different type of treatment ASAP. I'm just so afraid that I'm heading back into the days of not being able to work or go anywhere. Those days haunt me so badly. I can't stand the thought of starting all over after 100+ days of Pred. I'm looking into getting a consultation with another GE because I don't like how pessimistic my current doctor is about my case. He never makes me feel hopeful. But in the meantime I just don't know what to do or think. shakehead
Posted 4/27/2015 11:51 PM (GMT 0)
In reality, your GI may be right about you needed additional treatment. if you've been on 4 Lialda and you're unable to taper off prednisone without your symptoms returning, it's a sign that things aren't managed. You could try using more, different rectals but beyond that and swtiching 5ASAs, there isn't much you can do besides move on to the next medication. What are your symptoms, just the dull ache? The feelign of not being empty is common with inflammation... Usually a suppository may help. Have you tried hydrocort or canasa supps? Sometimes i use them with an enema.
Posted 4/27/2015 11:51 PM (GMT 0)
Have you tried the sulfa-free Rowasa enemas? Rowasa-sf is the name.

I have had that heavy feeling in the past and found that eliminating fiber and other heavy foods helped out a lot. Taking a fiber pill my gut likes makes up for it. After a while I can now eat some fiber foods (nuts for example) but not overdo it.

Also upping intake of good oils can help reduce inflammation which is causing this. It won't work miracles but since you are on Rx meds you can help them work by some diet modification. Drinking veggie juice (eliminating fiber this way) is also a big benefit. Try it by ordering at a health food store and if you like it get a juicer to make at home. I make a big batch and freeze in individual servings for a month's worth.

Another suggestion is adding 500 mg (up to 4 grams) of Turmeric-Curcumin pill daily. Studies show that people taking RX meds plus Turmeric stay in remission longer and better. It is an anti-inflammatory. Start lower dose and increase if no side effects.
Posted 4/28/2015 12:07 AM (GMT 0)
Just got over that heavy feeling actually. The feeling is like right at your anus and perineum right? That's where I felt it. I had it because I was going through a flare and going a lot and feeling like I had to go a lot. I'm on remicade though and had an infusion this morning so now I'm feeling really good.

I agree that you might need to up or change meds. If you've been on 100+ days of pred with little to no improvement that's not good. You need to be able to wean off of it and if your current meds aren't allowing that, it's time to add or change something.
Posted 4/28/2015 1:50 AM (GMT 0)
Prednisone is not meant as a maintenance treatment for uc, pred is very dangerous. You're much better off on stronger medications.
Posted 4/29/2015 10:43 PM (GMT 0)
Thank you for the responses.

I'm starting to see some pinkish/tissue-looking stuff in my stool. From looking at past threads, it sounds like that might be blood-tinged mucus. I know I need to tell the doctor about this, but I'm trying to get an appointment with a different doctor to see if I like him better or if he has different recommendations. If I wait a few days, am I making a huge mistake? Do I only have a small window of time before my condition worsens? Should I look into Rowasa-sf before jumping to biologics or does my lack of success with Lialda pretty much mean it won't work either? God I hate this.

iPoop, I don't plan on using Pred as a maintenance drug. I'm just still on it because I've been doing a slow taper.
Posted 4/29/2015 10:58 PM (GMT 0)
I actually used uceris to get off prednisone. I started it when I was on 10mg and tapered pred while taking it. It may have helped. Have you ever tried Uceris? It's colon specific but it's a steroid. It's better than taking prednisone but it's also not for longterm use.
Posted 4/30/2015 12:35 PM (GMT 0)
I guess it all depends on how quickly you can arrange an appointment with a new gastroenterologist. You don't want the plausible flare/regression of symptoms, to go too long, as it'll just get progressively worse.

If you can phone your current gastroenterologist and have him write a prescription for sfRowasa you could try it. Would it work? Who knows... Couldn't hurt to try. You do have pancolitis, so it might depend how far the inflammation/bleeding goes.
Posted 5/1/2015 4:03 PM (GMT 0)

notsosicklygirl said...
I actually used uceris to get off prednisone. I started it when I was on 10mg and tapered pred while taking it. It may have helped. Have you ever tried Uceris? It's colon specific but it's a steroid. It's better than taking prednisone but it's also not for longterm use.

I haven't tried that yet (I'm only on my first round of treatment since I was diagnosed earlier this year), but thank you for the suggestion. I can ask about it.
Posted 5/1/2015 4:07 PM (GMT 0)

iPoop said...
I guess it all depends on how quickly you can arrange an appointment with a new gastroenterologist. You don't want the plausible flare/regression of symptoms, to go too long, as it'll just get progressively worse.

If you can phone your current gastroenterologist and have him write a prescription for sfRowasa you could try it. Would it work? Who knows... Couldn't hurt to try. You do have pancolitis, so it might depend how far the inflammation/bleeding goes.

That makes sense. Well, I called the new doctor and the soonest he can see me is June 3rd, so I'm stuck with Dr. Doom & Gloom until then. I next see him on 5/12.
Posted 5/1/2015 4:16 PM (GMT 0)
Well tell him he depresses you and if he doesnt stol he will need to write a script for xanax.

I see my dr today, not looking forward to it at all! Its a love hate
Posted 5/1/2015 4:26 PM (GMT 0)
Haha, I like that idea!

Good luck with your appointment. Yep, I never look forward to them.
✚ New Topic ✚ Reply