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Flare for the first time in about 5 years

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Ulcerative Colitis
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Posted 8/4/2010 5:26 PM (GMT 0)
I have had trouble breathing out of both nostrils and cannot sleep more than 4 hours at a time, so I always wake up at least once during the night. To combat this I went to the doctor and he gave me Flonase.

After a few days of taking this I started to see a little blood in the paper, but was fine besides that. about a week later I started going several times at night with only blood and mucous, and last night I felt nauseous. Needless to say I've stopped using the nasal spray, and this morning everything was well formed and without any blood or anything.

I was taking 6mp, but last year I went off all meds and have only been taking something called Align.

Has anyone ever heard of problems with using a nasal spray? I can't imagine that its a coincidence.
Posted 8/4/2010 5:41 PM (GMT 0)
I know alot of time for me, that stuffyness is contributed when I have milk or a lot of sugar. My doc says yeast can affect the sinus passage too.

I can't say anything about the nasal spray stuff, but that eventually goes to the back of the throat to the stomach and such right, maybe the gut just doesn't like it.

I'm curious to know though, you're on no meds, Align is a probiotic right? 6mp put you into full remission?

Thats amazing. How long did you take the 6mp? Did your doc say get off all meds or did you do on your own?

Thanks

Posted 8/4/2010 6:09 PM (GMT 0)
I have never heard of problems created by a nasal spray but I have heard of problems created by corticosteroids, and Fionase is a corticosteroid nasal spray. Beware of doctors bearing gifts, you have to check everything yourself these days.

It is good that you continue to use Align. It is one of the probiotics that so many of us find effective for UC
Posted 8/4/2010 7:10 PM (GMT 0)
Thanks for the advice about diet. I'm willing to try anything to get a good night sleep.

I got UC in 99 and was hospitalized because of it and ended up staying there for 3 weeks and had really bad symptoms. Before being hospitalized I was on prednisone, but I went on 6MP after that. I still had a lot of urgency to go and had symptoms till about 2003, but they became less severe and less frequent. I noticed a direct correlation between stress and symptoms. Since then I only got mild symptoms maybe once or twice a year, and in the last 5 years or so have been in pretty much fully remission until last month.

Last year I moved and got a new doctor, who suggested taking Align and said because my symptoms had been so mild recently he didn't see any reason for me to be on 6MP for maintenance.

Since I was bleeding and had so much gas last night I'm going to go back to the bland diet for the next few days and hopefully that will help. I tried kefir as a probiotic before but that didn't seem to help. I'm also taking fish oil which I heard was helpful and I don't smoke or drink and try to have a pretty balanced diet and exercise regularly. Of course I was doing the same thing when I first got the disease, so I don't know how much it helps, but I figure it can't hurt.

therearemiracles said...
I know alot of time for me, that stuffyness is contributed when I have milk or a lot of sugar. My doc says yeast can affect the sinus passage too.


I can't say anything about<strong></strong> the nasal spray stuff, but that eventually goes to the back of the throat to the stomach and such right, maybe the gut just doesn't like it.



I'm curious to know though, you're on no meds, Align is a probiotic right? 6mp put you into full remission?

Thats amazing. How long did you take the 6mp? Did your doc say get off all meds or did you do on your own?



Thanks

Posted 8/5/2010 2:40 PM (GMT 0)
I use nose spray. Nasocort. If I don't use it, I can't breathe well at all. It not only effects my ability to sleep but it also makes my head feel very clouded if I don't use it. It's not fun walking around with your nose clogged up all day. I have 2 sprays, one for daily and one for when I am stuffed up. I don't use it daily, once in a while I have a day wher I can breathe. I use it often, probably shouldn't be.
Posted 8/6/2010 1:18 AM (GMT 0)

Max3732 said...


Last year I moved and got a new doctor, who suggested taking Align and said because my symptoms had been so mild recently he didn't see any reason for me to be on 6MP for maintenance.

 

That's kind of silly since the whole point of maitenance meds are to maintain your remission/improvement. I get tapering down a little, but I don't think he should've had you get off of them completely.

It's hard to say if your symptoms were just ready to come back or if it's the Flonase. Try going off it and see what happens. You could also try a decongestant or saline nasal spray, that might help.

You could also ask about rectal meds and they might keep your symptoms from getting worse.

What kind of UC do you have? (pancolitis, left-sided, etc.)

Good luck =)

 

Posted 8/6/2010 5:45 PM (GMT 0)
I believe I have left-sided UC, but I'm not sure. I've had some success with Rowasa in the past, but I absolutely hate using those kinds of meds even though I know they are effective. After my post I've gotten better in the sense that I don't feel nauseous or have the urgency that I did before. When I have gone its been perfectly formed, but I still have gas and feel like I have to go and all that comes out is a tiny bit of blood.

I think I'm constipated now, so should I have oatmeal , or would that be the worst thing to have for UC? It seems like aside from bananas or yogurt there's not much people with UC should eat. Any suggestions on what I should be eating now?
Posted 8/6/2010 5:59 PM (GMT 0)
Constipation is a symptom of low in the rectum inflammation, and your symptoms are obviously a flare.

You're focussing on food....bad idea since you need to be treating your butt instead.

Start the Rowasa....it won't kill you to use them, your aversion is preventing proper treatment.

It's unfortunate you're choosing to suffer rather than to treat. Remember this is a choice...hard to have empathy for one who chooses it where there could be a solution.

q
Posted 8/6/2010 6:25 PM (GMT 0)
I don't have Rowasa and my insurance doesn't cover prescriptions so if there was a way I could treat this without resorting to the medicine I would like to try that. That's why if this doesn't improve by Monday I'm going to have to pay for the medicine, but if there's any way to do it without the cost of the visit and prescription I want to give that a try.
Posted 8/6/2010 10:49 PM (GMT 0)
I'm hardcore 5ASA oral/rectal with what I would say is success for over 21 years. I can't see you suffering without medications if they can work for you, but I understand a financial situation. I would encourage you to do the meds, however. I can't help you with other ways to fight your flare...It might end up worse.

I think at the top of the forum with a sticky, there's a way you can get medications through the company if you cannot afford them.

Hope others who believe meds aren't the way to go will come in and offer their advice.

Hope you feel better soon.

q
Posted 8/12/2010 4:28 AM (GMT 0)
I ended up getting something called Mesalamine (which was quite a bit cheaper than the Rowasa) because my symptoms have been getting worse. I used it for the first time last night and now I've having liquid stools vs being constipated before.

My diet has consisted of eggs, toast, salmon, chicken, english muffins, crackers, and graham crackers with peanut butter as my only kind of dessert. Since I was starting to feel a little weak I have also started having boost. I don't really know what else to do.
Posted 8/12/2010 5:59 AM (GMT 0)
You're just using the generic form of rowasa rectal meds. I use those too. Keep doing them they should help you.
Posted 8/12/2010 11:59 PM (GMT 0)
The blood is gone but the frequency has gone way up. I've also lost my appetite. Is this normal when first starting this medication?
Posted 8/16/2010 4:23 AM (GMT 0)

Max3732 said...
I have had trouble breathing out of both nostrils and cannot sleep more than 4 hours at a time, so I always wake up at least once during the night. To combat this I went to the doctor and he gave me Flonase.
.....
Has anyone ever heard of problems with using a nasal spray? I can't imagine that its a coincidence.

Wow, this is really interesting to me. I'm having a flare right now for the first time in years. I recently started using Flonase because my allergies were really making me feel like crap. So now I wonder if the Flonase set off this flare. If so, it looks like I may be stuck between feeling terrible because of allergies vs. feeling terrible because of UC! Talk about pick your poison.... eyes
Posted 8/16/2010 6:24 AM (GMT 0)
I pick allergies....
Posted 8/17/2010 4:16 PM (GMT 0)
I used a nasal spray called Astelin before without any side effects. The breathing problem that I haven't isn't a seasonal allergy. I am like this all the time
Posted 8/17/2010 11:11 PM (GMT 0)
Have you had an allergy test? You could be allergic to dust or molds, which are year-round and aren't seasonal. I know from first-hand experience! rolleyes Astelin is an antihistimine, whereas Flonase is a corticosteroid, so side effects are likely to be different.
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