Rowasa headache?

Shows how we are all different - Canasa did nothing for me - wouldn't get up far enough.  I do Rowasa on the toilet and was told 1/2 was ok so I do fine with that.  Having headaches but think it is tension!  ElaineNY

I feel like I have been through this all before.  Doctor prescribed LIalda to try.  When I talked to the NP last week she and I both agreed I could not use the melasamines because of side effects.  I can't imagine why he thinks I can do Rowasa AND Lialda.  I had to quit Colazal - is there that much difference?  Just will have to see, I guess! 

ElaineNY

Thanks!  The doctor or the NP has never mentioned Asacol.  They know I have sensitivities to aspirin and NSAIDS.  I get the pills this afternoon so will start tomorrow and give it a try.  I know it is the lowest dose possible for Lialda - just might work, who knows?  When I took Colazal - started at 6 a day and then up to 9 (adding Rowasa then) and then dropped to 4 a day and had to quit - nausea, dizzy, sweating, everything increased so I could not stand it.

As for cost of medication - I have a $9 co-pay for medications so no problem there.  My husband is retired Army.  I am very lucky.  I was offered samples but have to drive 30 miles to get them so had her call in the prescription.  Cheaper than the gas. 

I am too old for this - ElaineNY

If I remember (and I don't very well) doctor said Colazal was best for left-sided which I have. 

I am telling you that the two weeks I went without anything (after quitting Colazal and Rowasa cold turkey Labor Day weekend) I felt the best.  Then I saw the NP and I knew I had to be on something - I was not in full remission.  However, no blood I could see, little left sided "discomfort" and normal one or two BM's.  Then she added Rowasa back every other day and it is helping but makes me sore and the headaches and anxiety is worse.  So, she consulted with doc and he said add Lialda and see him in three months.  I have a feeling I will be calling her - I will, however, give it a fair trial.  Last time I had to stay home 5 days - before I stopped the meds.  I was so sick with dizzy, nausea, aching, etc.

I will let you all know what happens!  I am VERY tempted to go back to just Imodium and pepto bismal as I have used for a year until I get too sick to handle it that way.

ElaineNY

NP said it was the lowest dose. Why do you say failure - failure of what? I have controlled IBS for about 25 years with Imodium prescribed from my doctor. Just bleeding led me to UC - certainly mild according to many here. If I did not have the bleeding I would not know it from IBS - except maybe a little more sweating at night and nausea mornings only.
I so want to have the knee replacement but it is a lot to deal with. How in heavens name have you dealt with it all so many years? God bless you.
ElaineNY

I mean regarding using imodium to control the diarrhea or loose stool, it can give one a false sense of being OK and not treating the inflammation..possibly leading to failure of using meds or feeling that one needs them.

As well, imodium if taken consistently can set the colon up for being extra lazy (it learns very quickly), and just not want to work at all.
While toxic megacolon isn't common, it can happen where if one's colon isn't doing it's peristalsis and one has gas....it can expand the colon in areas and therefore lose its elasticity to function.

Those of us with IBS and UC have a difficult time differentiating when there's no bleeding.

But, you say you've used it for a long time...so, I can only "suggest" you don't depend on it. Fibre supplemantation can help with bulking the stool, helping exercise the colon and encourage regular bms...etc.

If your doc isn't concerned...I shouldn't be I guess. You know what works for your body. I do understand why you use it....

quincy

Yeah, it's difficult when we're sensitive to meds...slow to increase is best. Salicylates may not be compatible with you at all...but do give it a fair chance. If it's any consolation, I got a bit worse before the meds started to do their thing. My husband was not happy about it...but I told him what my doc said..be patient.
It was bad time for me considering I had lost so much weight and was in the bathroom up to 20 times with horrific explosive bloody diarrhea feeling like I was expelling razor blades.

Imodium for you seems to be fine according to your doc...I guess if you weren't having bms he'd be concerned

Have you tried any antispasmodics such as dicyclomine? low dosage, of course?

quincy

Well, putting it all in perspective is difficult. You have much more on your plate than just UC...it's also hard to treat ourselves in a holistic way. Sometimes the smallest things can be the biggest. They don't say "cut in the cake" or "straw that broke the camel's back" for nothing.

Dicyclomine is an antispasmodic and smooth muscle relaxant and will also help with acidic stomach (a bit) and indirectly a bit with diarrhea if it's caused by spasming guts. Sometimes our digestive tracts lose the rhythm...like arrhythmia of the heart...this helps to level it out (best way I can explain it), encouraging it not to make such a big deal of stuff.

IBS is also called spasmodic colitis....just a hint as to why antispasmodics can help with it. I've used it for the entire time of having UC...I depend on it, and do end up taking at least one most days.

It's good to hear you'll give the Lialda and rowasa a fair chance.

Keep us posted.
quincy

I think I get headches from Rowasa. They are terrible and last for over a day.