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Ulcerative Colitis
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Posted 8/7/2010 12:35 AM (GMT 0)
Hey All,   Sorry in advance as I’m sure this is hard to read/follow   Been reading on and off for awhile but finally joined looking for some advice/venting.....   about a year ago ended up having really bad D and urges went into my Primary thinking food poisoning with how quick it came on gave me some meds (not imod or lomot and I can’t remember what it was other than a powder I mixed and didn’t seem to help at all) about a month went by saw him again and didn’t have any ideas so set up to see a GI doc. between that visit and the GI ended up having blood and got very light headed so ended up in the ER....   That night they were doing everything and checking levels i think my hem got to around 18~? and they couldn’t decide to transfuse or not. The next morning they didn’t but did have me try and take the prep for a c-scope i couldn’t get more than a couple glasses of it down before starting to throw up nonstop. According to the report they didn’t make it past the transverse into the ascending im guessing due to the extent of inflammation? It did sound like they did an upper endoscopy as there was mention of checking my stomach. Overall the hospital had the Med team pushing bunch of meds and a GI team that just said UC and was next to impossible to get help....     Fast forward a year i have been on lialda and was switched to asacol due to insurance with my work changing. I don’t think I have ever really had remission as i have had at least a form of a flare about every 2-3months. I started having another bad flare where was going 20+ times a day and ended up in the hospital the first time just to the ER for fluids and released that night. Then a week later was admitted as was dehydrated again. This time after being really frustrated with my GI I switched to another and so far he has seemed to be much better and helpful...however here is where my questions come up...   First he switched me to imuran as we agreed 5-asa meds didn’t seem to be helping and that Pred so far is only thing that seems to kick start any remission. After a about 2 weeks on imuran and upping from the orig 50mg dose to 150mg i got really sick and started having bad nausea and feeling like i was really out of it. Since stopping imuran most of the symptoms have gone away however i am still on a high dose of pred which im sure is part of it. The downside is according to him next step is remicade which i am open to trying as i am 25 and not ready to give up my colon....   My fear is after the reaction i had to imuran is that ill have something of the same to remicade and also being that my new GI doc didn’t do the orig scope he won’t start remicade without doing one. I really have a hard time wanting to go ahead with the prep for the scope as in the hospital it made me throw up and that was worse than everything else last time. I believe this is a different prep as its MoviPrep and i think the hospital stuff was fleet? but from what i have read they are all about the same. My other fear is if the last docs did the tests as they report is there a chance this could be re diag as crohn's or would you guys say it's pretty rare for that to happen? I guess in the end just wondering what you guys would do. I am starting a new job in a couple weeks and can’t afford to keep being sick without going bankrupt in the next month so I’m kind of feeling that remicade is my last shot at saving my work path right now.   I also forgot to mention during this current flare I have been having a lot of issues at night in the sense of not being able to sleep and if i do i wake up almost always wake up at 3am or 5am and am stuck in the bathroom for at least next hr on/off. Is this the normal to have these issues at night or what? I feel if I could just get somewhat of a norm sleep schd id feel 100x better! I have also tried canasa but that didn’t seem to make any difference so at this point the doc has had me stop all 5-asa and am currently till scope on 40mg pred in morning and 20 in the afternoon and vic for pain as needed (usually take one at night to try and help sleep)   Sorry again for this being a pain to read im sure but i just needed to vent/rant as I am stressing a lot about new job coming up and what to do....  
Posted 8/7/2010 3:04 AM (GMT 0)
I would go forward with the scope and try to get on Remicade. I don't think your reaction to Imuran means you will have bad luck with Remicade but I don't know too much about that. I know being on prednisone for long periods of time is bad for you and can have a lot of negative side effects. I've been on it for a few months and I feel chubby and terrible. I started taking 6mp to try to get off prednisone and so far I am doing okay but not 100%.

I don't get up in the night to go to the bathroom now but when Iwas in a severe flare, I did. It was awful. You do need to get this under control so you can function at work.

How long have you been on prednisone?
Posted 8/7/2010 3:27 AM (GMT 0)
Yeah the only thing the doc could say was it is normal to have more issues at night. I have been on 40mg in morning and 20 in the afternoon due to feeling like it was wearing off around 2-3pm. That dose was started about 3 weeks ago when this last flare started but I have been on and off since orig diag last year and my previous doc had me on no higher then 40mg in the am. I mainly am having issues with urgency at night during the day seems like the pred stops me for the day time after the first hour or so when waking up.

Sorry again for the long post and thanks for taking the time to reply. I am going to try and do my best with the prep but its just hard getting over the mental part of remembering what it was like doing it before :-\ call me a baby i guess. I wonder how much of this anxiety etc is from the pred and being on so much now.
Posted 8/7/2010 4:53 AM (GMT 0)
Can'tStand, this is just an idea, but might some sort of suppository or enema at night help with your sleep-time urgency?

I'm thinking of something like a liquid steroid enema, that will give you good coating of the lower part of your bowel - more than a foam would - and might provide some relief from inflammation during the night, and therefore (perhaps) less need to be up and down going to the toilet. A topical treatment like this might also enable you to lower your evening pred dose and that, in turn, might help with your sleep as well.

All the best to you.

Ivy (a Crohn's mod, just popping in to say hello while your mods are away).
Posted 8/7/2010 4:59 AM (GMT 0)
I have tried Canasa and didnt get any relief before. I will ask about the enemas instead. I had brought up Rowasa to my previous GI but he quickly shot it down due to the ammt of inf. Im guessing depending how the scope goes the new GI might do the same? I wonder how quick I can taper down on the Pred if remicade does start working early on.
Posted 8/7/2010 5:13 AM (GMT 0)
Aaaaah, sorry. I'm in Australia, so I don't always recognise your band names.

I feel bad recommending an enema, especially considering you have so much inflammation, as it might hurt - I know it did me - but it just might ease your pain and provide you with some relief of symptoms.

I know that it's scary trying something like Rem when you've already had a reaction to another drug, but sometimes we just have to do these things. Fortunately, Imuran is a completely different class of drug to Rem, so your chances of a reaction are not as automatic as you seem to think they might be. And fortunately, you will have medical staff around you while you receive your infusion, so they will be on hand to deal with any immediate problems, should they arise.

Yes, you can reduce your pred dose on anti-TNF meds - or even get off the steroids completely! - but this might need to be a gradual process, depending on how long you've been on them and what level of response you have to the Rem.

Another thing to consider is that if there *is* a chance that you have Crohn's, it's additionally important to get your inflammation under control as quickly as possible. Remember, Crohn's patients can't be cured through surgery, so we need to try to keep our disease under control for as long as we can, so we don't end up with no innards... (that's put very simply, but I hope you know what I mean).

Ivy.
Posted 8/7/2010 5:25 AM (GMT 0)
Thanks for the info! Thats what my fear is, my last GI doc didnt seem to think it was crohn's from the orig diag but then again it took over a year to give up with the 5-asa meds so i wonder how much he was. It's been really hard for me at least to find online any info about if theres a chance i could have crohn's or not and my new GI wont comment till after the scope is done next tuesday. The stress I think is whats killing me right now and i am bad at letting things go :)...I know I cant let this disease control me but with this last flare and my old job has me un reduced hours so I have had the last 3 weeks to sit around and think it's killing me to sound like a drama baby lol.....

I should mention as well I have tried different diets on and off granted I am horrible at stick with things like that so I wonder how much things like SCD can help.... Would you guys suggest waiting till getting a flare under control before trying any more diets? This new job thankfully will have a couple months of desk training before being in the field but I worry as I dont think i have ever had remission yet. How would you guys handle it? Im scared to tell my new work about my condition for fear of it costing me the job in the end.
Posted 8/7/2010 5:43 AM (GMT 0)
RELAX.

My advice would be to get through Tuesday first. I know it's really, really, hard, but you can drive yourself crazy if you start letting the "what ifs" start dominating your thoughts. (Been there; done that; it's not fun).

It can be easier to plan and make decisions once you know exactly what you're dealing with. Why not just wait until the scope is over, and then you can start discussing options with your doctor, and with everybody here?

btw, as far as preps go, I have a *horrible* time with Fleet (esp the two doses variety) but a much easier time with some of the other preps. I hope that's true for you, too.

Ivy.
Posted 8/7/2010 5:44 AM (GMT 0)
ps. Spookyhurst, who is online now, is a good source of information about the SCD. Feel free to pop over to Crohn's and ask her advice, if you like. You can also read the "diet" link in my sig.
Posted 8/7/2010 12:09 PM (GMT 0)
UC is really frustrating, and many folks spend a lot of time trying various treatments to get the symptoms under control. 

You have a diagnosis, so I'll be the contrarian here and suggest a patient doesn't need a scope to start Remicaid.  A number of guidelines state that scopes should not be used to "visualize" the disease:  Treat the symptoms after diagnosis.  Some docs like a scope when a patient has a major change in medication, but you've already jumped from 5-ASAs to Imuran without one, so that rationale is bunk.

You might push back on your GI or see if your GP can set it up, especially since this course of treatment is causing you so much anxiety.  You might also suggest a sigmoidoscopy as a compromise.

Crohns is also treated with Remicaid.

 

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