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so sad over this whole thing

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Posted 3/14/2015 11:08 AM (GMT 0)
I haven't posted lately because I am so sad over this whole disease, as I know a lot of you are also. I am trying to do whatever I can to get better but it seems I have failed.

I am currently flaring and have been since September and I think it is low as the blood is bright red and I have thin stool which is a new symptom for me. Not as much blood though as before but I see more mucous than I have in the past. I am currently on balsalazide 9 pills a day rotating hydrocort enema and mesalamine enema, but things are not improving. I do only go once or twice in the morning, but during the day I have maybe one or two episodes of passing gas on toilet bowl with what looks like mucous balls. The mucous balls are not bloody though. I just don't know what else to do and am getting so down about this. Somedays I think I am getting better and then the next not. What a life!

I am scheduled to see doctor on tuesday and I am going to ask for another scope to see what is going on down there, although the last scope I had in February of last year was awful as after it I couldn't stop going to the bathroom at the hospital, I think the fleet enema I took in the morning started working afterwards. Last scope showed inflammation to 30 cm. he said it was moderate.

I am still taking the vsl #3ds, psyllium seed powder, boswellia and vitamin d (2000 mg.), calcium, multi, biotin and b12. I think I eat healthy, although I do love chocolate and maybe I should just give that up also.

Just wanted some thoughts from people as to what they would do in this situation.
Posted 3/14/2015 11:24 AM (GMT 0)
give up the chocolate, at least for 30 days - i know how painful that can be, but it is something that is in your control - ya, sometimes things like that don't help - but what if it did ?

it does sound like you're doing all the right things, at least imo -

i wouldn't get scoped if i was in your situation - if things haven't changed significantly since the last one, it would seem unnecessary at this point -

life can and many times does suck with this disease - unfortunately, it's not like that ugly sweater your gramma gave you for Christmas - you can't take it back and get what you really wanted - you're stuck with this crap, good and bad days :-(

hang in there -
Posted 3/14/2015 11:26 AM (GMT 0)
If the inflammation is distal, does rectal 5-asas like sfRowasa or Canasa help? The sfRowasa reliably stops the bleeding for me, but if I stop using for just 1 day it comes back. Have you tried 6mp or Remicade?

ceecee, when I was using generic Rowasa from Perrigo I actually had worsening of my symptoms so I never used them. The sulfite-free version is brand only and often difficult to get since many insurance plans do not cover it and will require prior authorization, but it is very worth it.

the hydrocort enema is a glucocorticosteroid, which will permanently thin the membranes it touches over time.

I really think every patient in this forum with distal disease should try sulfite-free Rowasa, aka sfRowasa if they haven't already

Post Edited (fightUC) : 3/14/2015 7:10:02 AM (GMT-6)

Posted 3/14/2015 11:38 AM (GMT 0)
I am so scared to go to higher drugs and am concerned more with the thin stool than anything. My doctor did mention remicade at one point but I thought that he was skipping over the in between drugs so I dismissed the idea especially with the side effects they mention. Usually, I think I am getting better and I can go all day feeling fine, but then the morning comes and bam I'm back to start so I thought that remicade or the other drugs are not necessary yet, but I could be wrong.

I want a scope to see why my stool are thin and ribbon like and it feels like I am constipated, which although I have had constipation in the past, the thin stool is something new.

Does anyone think I should try a different 5 asa instead of balsalazide do you think that might make a difference?


fightuc, I do use mesalamine enema and hydrocort enema rotating nightly currently and even use the canasa in the am, do feel better with the hydrocort enema though, it seems that when I do mesalamine enema things don't feel right in the morning, although I don't think I am allergic or anything to it, just think the hydrocort enema work better but don't know if I should use them for an extended amount of time.

Post Edited (ceecee600) : 3/14/2015 5:41:17 AM (GMT-6)

Posted 3/14/2015 11:40 AM (GMT 0)
Me too ceecee, the thin stools I experience on a daily basis. The best thing that helped me with that was sfRowasa, I use it as an enema at night and it's works on day 1. I think it would make a world of difference Ceecee, really I do. I am also afraid of higher drugs like 6mp/remi and will not take them unless forced into me while I was asleep.
Posted 3/14/2015 12:26 PM (GMT 0)
pencil poops are caused by inflammation - inflammation can also cause constipation -
Posted 3/14/2015 12:45 PM (GMT 0)
are your mesalamine enemas sulfate free?

could you try any resistant starch or oat bran?

I had good results with Lialda if you want to try a different 5-asa
Posted 3/14/2015 1:00 PM (GMT 0)
I would recommend immunosuppressive medications (aza, imuran, 6mp) before remicade, as usually they are tried first. The side effects are extremely rare; they aren't prednisone. I've been on 6mp for over two years now, and have yet to get a single side effect. Sorry, it's pretty clear that the meslamine drugs are no longer enough for you.
Posted 3/14/2015 1:20 PM (GMT 0)
I was on balsalazide when I first dx and it worked great, until it didn't. My dr changed to Apriso and that worked great for a long time.

I would try to chg that med first
Posted 3/14/2015 3:03 PM (GMT 0)
I think I might ask doctor for liaida as I see a lot of people have good results with it, before I try something stronger. I know its inflammed as it seems when I put the mesalamine enema or hydrocort enema in and I stand up I do not feel it moving down like I use to now it seems to go up higher and stay higher until the morning when I let it out then comes the poop. It use to be that it was mixed in with the stool now not so much it comes out first. I don't know if this makes sense but this is how it feels to me.
Posted 3/14/2015 3:14 PM (GMT 0)
I recently switched from Acacol HD to balsalzide because I was seeing whole Asacol pills in my poop and thought that maybe the balsalazide would work better since it has a different release mechanism. It didn't. Things actually got worse so I switched back after 2 weeks. It's been a month since that experiment and I am doing pretty well. For me the combination of Asacol & nopal water has me closer to full remission than I have been at any point since June 2014

From what I have been reading it seems like you would need more than the max dose of balsalazide to equal the max dose of Asacol HD or Lialda or Apriso. I don't know how all of that works, but figured that was why it didn't work for me -- I wasn't getting enough medicine. Perhaps you could ask your dr for a switch and give it a try for at least a few weeks before moving up the med ladder.

I too am scared about the stronger meds (I think everyone is). But I know the risk of not getting things under control is greater than the risks from the meds so I will take them if I have to. Hoping I don't. Will depend on the results of my scope in May. Right now I am doing so well, I can't imagine that the scope is going to show anything that would warrant stronger meds at this time.

Do you take any fiber supplements like psyllium or Benefiber? They should help to bulk up your stool. Just start them slowly and be sure to drink plenty of water so you don't get constipated

** edit** I see you are already taking psyllium. I missed that when I read it the first time.

Post Edited (CCinPA) : 3/14/2015 9:17:47 AM (GMT-6)

Posted 3/14/2015 3:53 PM (GMT 0)
DBwithUC I wasn't aware that the sfrowasa was available through my insurance, but I just looked it up and it is. The insurance website will give you the cost of the drug when you type it in and when I looked up sfrowasa it came up as 84 days qty. 420 for $135.00. I would have to rent a uhaul truck to pick up that prescription, so I changed the qty. to 2 a day for 20 days qty 40 and it came up as $36.00, which is reasonable, still a lot to pick up at the store at once. Anyway, I will ask doctor to try those. Thanks.

CCinPA, I was also on asacol hd before balsalazide and although I did see bleeding it was somewhat controlled on the asacol hd and I was not using the mesalamine enemas at the time so I think maybe I should try to go for the asacol hd or lialda this time around to see if it helps. The balsalazide worked good for 3 months as I see it. Yes I do use psyllium seed powder and slippery elm bark powder also, it seems to help me go to the bathroom as right now it is a hard to go and I don't want to push too hard for fear of seeing more blood. My stool is very thin at the moment although it is formed ie no diarrhea but like I said hard to go, but when all is done in the morning I seem to be okay.

I didn't include signature because I have to update it.
Posted 3/14/2015 4:02 PM (GMT 0)
ipoop, sorry didn't mean to leave you out, I appreciate your comment on the medicine 6mp, but I still think I would want try another oral mesalamine before moving up the ladder, because if I don't I may not ever know if it would of helped me out.
Posted 3/14/2015 5:23 PM (GMT 0)
Thin stools can be a result of IBS as well, not just inflammation so getting scoped is a really good idea.
Posted 3/14/2015 5:45 PM (GMT 0)
Your symptoms sounds a lot like mine do currently. Flare since end of December, thinning of stools, blood streaks on outside of stool, and sometimes just pass mucous looking movements. At first I thought maybe hemmies, but I just don't know. If you feel like you need a scope to get a better idea than do it. I am trying slippery elm bark powder before dinner to see if that may help me heal. Are you taking just one sachet of VSL3 daily? Maybe try increase that to 2 daily? That is my next step. Good luck with getting it under control, I know it's hard but try and keep your mind on other things.
Posted 3/14/2015 6:44 PM (GMT 0)
If the steroid enemas seem to be working better than the mesalamine ones then maybe you could try using the steroid nightly instead of alternating? Also, a suppository in the morning might be helpful, especially since it sounds like the majority of the inflammation is low. Perhaps the lowest rectal area isn't gett a lot of the med coverage with the enema but a suppository would hit it directly. I wouldn't be too alarmed by pencil thin stools, sounds like rectal inflammation or hemmies or both. I mean that as in ok yes it's inflammatio and needs to be treated but I'm not sure another scope is needed since you had one recently and with after effects that sucked.
Posted 3/14/2015 7:45 PM (GMT 0)
Cavalier9, trying to keep my mind on other things is really difficult, all I seem to do is dwell on the sounds of my stomach, I know I shouldn't but I can't stop.

toomuchpoopin, I didn't have a scope recently it has been a year, do you think that is too soon for another scope, I am really interested to know what is going on in there, as I used another mesalamine enema this morning since I am home from work and all afternoon sounds from my stomach were like farting inside then I let it out just now and no blood, no poo, just mesalamine, don't know what to think. As this is when I think maybe its getting better but tomorrow morning I am sure I will start this round about again.
Posted 3/14/2015 8:12 PM (GMT 0)
When I was first diagnosed I had inflammation up to 30cm and I have been on Lialda and at first I did the Rowasa enemas and for the last 2 years Canasa supps. I would probably try Lialda instead and maybe do an enema in the evening and a suppository in the morning. I would try to get off the steriod enema because those aren't good long term.
Posted 3/14/2015 9:57 PM (GMT 0)
Oh, sorry, Ceecee, I tho you had a scope more recently than that. Good that you're seeing the doctor on Tuesday, I'm sure he will have some options for you. Keep us posted.
Posted 3/15/2015 6:28 PM (GMT 0)
I get lots of movement internally when I use the enemas, so I wouldn't call that an issue.
But if you are flaring, I'd first start with a change in the oral 5ASA if you have never been on anything other than the Colazal.

You'd release the enema if it's putting pressure and signalling you need to go. If you have no stool, then you'd only have the enema to poo out.

How much have you improved since using the enemas continually?



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