Was beginning to do so well on meds and scd...??

Ok, by july I was flaring nastily and started Asacol again (4x800mg daily). I started doing really well. The bleeding stopped, no rushing to the toilet, no urgency. That all cleared up, I was only having problems with eating and p.a.i.n. I was also told I could lower my asacol dose to just 2x800mg a day. Had a few more tests and it turns out that there was a bit of leftover inflammation, infact the stool sample said there was a considerable amount of inflammation left over. That was two weeks ago. The GI gave me 1g pentasa (thats the UK name of rectal asacol suppositories). That was two weeks ago. Im also on scd. I was doing well, started feeling like I was getting better, then I eat banana pancakes and became constipated for four days, to help with that, in desperation I ate quite a bit of raw fruit. Even after having semi regular bm's, it never felt like I emptied my bowel and since then Ive not been right. Over the last few days I started getting that all to familiar lower abdominal burning sort of pain that just got worse and worse and progressed into that left sided pain I associate with the beginning of a flare. Ive been away for the weekend, did really well with the SCDiet. Was eating a bit of dried fruit, prunes, and nuts. Still somewhat constipated but today, after not going all morning, but knowing I needed to go (bm's), I get home from my weekend away and I go three times. Bm's arent hard, which I thought they should be bc Ive been SO constipated, in fact, after not going for the 4 days, bm's still werent hard at all, they are pasty, soft and fluffy, not completely formed, but not really D.

So, I wanna pick your brains. What could be going on? Could the meds not be working? Did I do wrong by, first of all, eating bananas, then the other raw fruit? Am I not taking enough meds? Could it just be a case of me not having a high enough dose? Is this just normal, should I just accept it? You know when you know something just isnt right with your bowel, after having felt a little bit better, then something funky happens and you know you just arent quite right?

Im just SO frustrated with this. I was beginning to think I respond really well to asacol and I dont know what I should do, this 'feeling' in the abdomen is SO familiar, I feel like I did when I was off the meds and just trying to get by with out them, suffering with the little bit of inflammation that I never got rid of.

thanks in advance.

i know my opnion but i dont think people really like my opinions. oh well. in my experience of being a fruitarian i found bananas really constipating
unless they were spotted ones. also banans allow candida to really over populate,

the constipation could also be due to the fact your carbs are too high, and you have bowel swelling, I was told that once on crohns line when i was doing the fruitain thing and they were right. i was eating too many carbs and allowing candida to thrive. reduce the fruit completly eat 1 apple or 1 piece of fruit a day and the pain will go. or at least that is what im experiencing right now. dont expect to be perfect it takes along time it took me months. to get no pain

I'm trying to figure out what exactly you are asking (read it twice). It seems you are just a little up and down, that's normal, healing is not in a straight line.

Banana pancakes would constipate me too, lol, between the carbs and the banana. But once won't kill you, just slows things down. Instead of raw fruit or prunes you should try Citrucel or Metamucil instead. Less sugar and gentle fiber.
I think you should continue as you are, skipping dried fruit and bananas. You didn't mention bleeding so that's good.

I know I focus too much on my colon and need to take a longer (say weekly) view of things. If the trend is headed downward on a weekly basis for 2 weeks running then maybe meds need upping. Maybe I'm missing something more serious you are worried about. If so, sorry.

Some people have problems with fructose, you may or may not, but just an idea to throw out to you.

SIGIBD

Just because it's legal on SCD doesn't mean YOUR colon can handle it. I found this to be very true for me. Haven't had a banana for a year because they don't agree with me. Couldn't eat SCD yogurt for a loooong while, ditto. Almond flour began to cause C.
It's confusing but I treat SCD as a guideline not a bible.

And even when you have tested a food/drink and think it's OK some days it's not. Example: I've had to quit SCD yogurt after doing well with it for a couple months. Oh well :-(

I think there are some of us that are EXTREMELY sensitive to what we eat.

I agree the C could be causing pain, or it could be your colon talking in the only way it has.
It's a puzzle to me, to doctors to everyone, how UC acts. Otherwise there would be "one-size-fits-all" treatment, and there's not.

Good luck with SCD. If you are better than you were when you started that's a good thing.
I've had some backward days lately and know it's frustrating. But I'm better overall than I was before SCD. It's just annoying when there's any backtracking.

Thank you Alinus. I do have the book, but thank you for the offer. Its silly but I call the book my boring book. I say to the kids 'Pass me my boring book' and they know what Im talking about. Its not hard to read but its not like its a book you sit down to enjoy a good read, lol. I did find it interesting... helpful, tho.

What country are you from, if you dont mind me asking?

Ive got to keep in mind that I was on a really bad diet, even tho it was reletively healthy compared to the SAD diet (standard american diet) before scd, so to get used to scd, yeah, I have to be patient with myself on it. Ive come a long way. Everytime I want to cheat, maybe eat some chocolate or try bananas or dried fruit, and I suffer for it, it becomes obvious that those little guilty pleasures are SO not worth it. Im feeling slightly nauseus right now (and Im not even gonna tell you why, lol. I did eat something very naughty... ... ok it was cake batter ... only a bit!!! honest ).

And yes, Im learning just how very very sensitive my stomach or bowel (digestive system) is. I found this SO frustrating at first, now I am very much resigned and I have very few slip ups, but every now and again I do and I suffer terribly. I had coffee for the first time in about a year yesterday... and it was delicious. Not too hard on me, but then again I was already suffering slightly. I have a very bad attitude sometimes bc if Im suffering a teeny little bit Ill think 'Oh well Im suffering anyway, Ill just eat this yummy thing and get over it later'. I tend to learn the hard way I guess ... sigh...

I think you are receiving great advise here. I would like to suggest two things. Probiotics and Psyllium Seed Powder.

The probiotics are "good" bacteria that can help to stabilize the bacteria in your colon, so that "bad" bacteria cannot grow as quickly. This is an over simplification of the process, but "good" bacteria living in your colon can help prevent the "bad" bacteria and fungi, such as candida from growing there, because the "good" bacteria will use the food that is available (carbs). I would suggest VSL#3, but there is a lot of information on this forum about other probiotic brands that have been beneficial.

The psyllium seed powder can help keep you regular and I believe it helps the colon heal, either because it is a good prebiotic, which nourishes "good" bacteria or through some other mechanism. Doesn't really matter to me what the actual process is, but I know it has helped with my daughter's treatment. The psyllium seed powder is a little different from psyllium husk powder. It absorbs a great deal of water and seems to act like a bulking/softening agent in the bowel - almost like a poultice would for an external wound. The beneficial effects of psyllium seed powder are well documented. Others on this forum have found psyllium husk powder to be beneficial as a bulking agent in the stool.

We mix the probiotic powder and psyllium seed powder in with applesauce and cinnamon.

I also agree that rectal meds should help and the idea of looking at which direction you are heading over a longer period of time.

Best of luck and god bless,
UCPop

Hi.

I''m from Romania. Regarding the book - i understood after some months on SCD that it contains general principles, and not all that is in there applies to me. I''ll have to find out on my own what i can tollerate. But there are some things there, written from experience she had with many people wich seem to be true.

Regarding working - i was a workahollic 12-16 hours / day and i like it a lot. Now i work 8 hours a day, maybe less. This is what i can do, and i am satisfied with it. In 2009, when my UC and especialy my AS put me in bed for about 5 months i wasn't able to wash my own dishes after eating and i brought to my workplace (wich i own) a bed in wich i rested every 30 mins... I am happy now i can do those 6-8 hours. I will never try to over-work myself. Never. Stress has a lot to do with our condition. Must be avoided at all costs.

IF you feel you are in a depressive state, talk to you doctor, maybe some antidepressive will help you. For me they helped.

P.S.
Carrefull with probiotics - do not use those who contain FOS - also try them in a low dose to see how you will cope with them. I flare from every i've tried probiotics including those containing only bifidus or lactobacilus species... Strange, but I do. Carrefull.

Oh yeah, one more thing
After you've given Asacol a fair shake (3 months or more) you SHOULD think about a different med (Balsalazide/Colazal perhaps). I never had any improvement on Asacol and took it for years.
And I HIGHLY recommend mesalamine enema (Rowasa/available as generic). That one actually works.
You won't love it but it works.

I just spoke to her. She said my last stool sample (which wasnt available to the last consultant I saw) was all clear! At that stage I was still having severe pain associated with eating. She said I should stop taking the pentasa altogether, lol. She said to take some laxatives and that should sort out the constipation. Im slightly annoyed. The consultant I saw who gave me the pentasa suppositories said that the pain could definately be associated with inflammation being present, the nurse practitioner was surprised by that. She didnt think so. I find this all so confusing.

So, Im going to have another stool sample done. If there is no more inflammation left, what should I do? Should I stop taking the rectal meds like she said? I know what Im going to do in the meantime! Im not going to stop taking the pentasa. Im going to atleast finish the coarse, which has maybe ten days left, see how I feel and go from there. I should have the results from the stool sample. If the inflammation is gone and Im still in pain, Ill have to consider another coarse of action.

What do you guys think?

I didnt ask for the Salofalk enemas. I ... felt it was useless. I need to speak to someone who knows what they are talking about. This nurse practitioner seems like a very nice lady, but I just dont dig what she's saying about whats going on inside my bowels, ya know, she always says the opposite of the advice I get from you, lol. (I knew what she was going to say).

The pain is in my upper abdomen, stomach area. It can be within five minutes after eating, those are usually after eating something sugary, chocolate, cake, cookies (all of which I have abstained from, since july... with the odd exception from time to time). I can usually have some very severe bloating type of pain that I havent had in a few weeks, when its bad, its VERY bad. That kind of pain occurs after I eat just normal food. It used to be much worse when I was eating potatoes, flour, rice (evil stuff), and starches, etc. Now I have good weeks and bad weeks. On a bad week I cant eat anything without being in agony within an hour. On medium sort of weeks, I can manage the pain by laying down and relaxing as much as possible, especially after eating.. On good weeks I can eat what I like. Those weeks are rare and despite the constipation Im not in too much pain when I eat. Its all upper abdominal pain/discomfort. Ill have days when I feel slightly nauseus, but have never vomited and its a very minor thing. The upper gastro pain can be debilitating on bad days.

Bm's... Those are reletively random as well. Most recent weeks, I can have from none for up to four days to three or four a day. Right now D is most definately not a problem. As for consistency, I would say its fluffy, even after no bm's for 4 days. Consitstency is like soft serve ice cream thats got a bit too much air in it or not frozen enough (delish!) or it is the long semi-formed type that we might associate with the beginning or end of a flare. Not hard at all (except the very small bit that comes out in the middle of some fluffy stuff very infrequently... once in a very long time). Right now Im struggling to go at all and its not hard, like you would expect with someone who feels constipated.

Ya know, Ive never gone into so much detail with my gi or the nurse specialist consultant lady.

I have a plan quincy. I am going to finish this round of pentasa. I will be recieving an appointment with the gi in a months time. In that time Im going to be keeping a very strict food/whats-going-on-in-my-gut journal. Im going to up my asacol. There is NO way Im lowering it or staying at this low dose so soon after supposedly just getting out of this latest flare. Im beginning to get a bit more nervey about how I approach these guys. Today I was telling the Nurse lady that she was being a bit flippant about the pain Im experiencing, that I live this roller coaster every single day of my life. Thats when she suggested I see the GI, lol. She's pleasant and nice and all that and I didnt want to be rude but I kinda did want to tell her she wasnt being very helpful. I mean, one guy said the pain IS most definately associated with the inflammation left in the bowel. This lady says its not. wth?!

Ive tried antispasmodics before. There was only one that worked at all, and it stopped working after a few months and also made me constipated.

And whats more is that Ive been thru ALL this the first time around when I was first diagnosed. I got the same treatment from the gi's. Its like what I experience has them stumped. Im beginning to understand it. Beginning to.

Anyway, thank you for taking the time to go thru this all with me. I actually dont feel so alone. Thank you.

Thank you Alinus. You guys rock, honestly. For the record Alinus, I do boil all the fruit and vegetables I eat. The only reason I ate raw fruit a week and a half ago was to help with constipation, it didnt so I wont be doing it again. Thanks again.

Q said...
Hi...too bad it's so frustrating for you to get proper treatment...but you will be getting in to see the GI.

Where exactly is the pain in your upper abdomen...exactly?

Have you tried using something like Zantac twice a day? It's possible reflux is somewhat of a culprit.

Can you get a refill of the suppositories so that you can take at least two daily and have enough till you see the GI?

Assertive is good....what you said is good regarding the flippant remarks.

The pain, when it is mild, is just a little dull, burning sort of ache down the left side of my abd, just what you would associate with UC. When its bad, I feel it all over my abdomen, about an hour after eating. It feels like my stomach is expanding and I associate it with the something not quite right when I digest food. Its not always spasms, altho I do get those, but mostly only when I eat something I know I shouldnt, and its immediate. Am I describing it alright? If not perhaps you could ask me some questions... is it here, is it like this... etc. Maybe the way Im describing it isnt very good. I only just realised that a sensation I found difficult to describe was what someone here called 'pressure', what one gets with uc, where it feels like I want to have a bm. I get that still too and its also associated with that left sided pain or when I eat what I now know I shouldnt. I think its all the proctitis. They say the stool samples have come back clear, that sample was from just before I started the pentasa (rectal asacol), Ive felt much better since starting that, but still have these symptoms. For me its early days with the meds, too early for me to say I feel like Im in remission. Im still working towards that.

Im sorry if Im not being helpful. I find it sometimes hard to describe and its only since finding healingwell that Ive learned the lingo to begin to accurately describe, but still I hear some people dont suffer any pain whatsoever to do with their UC. Im just like because pain is something I deal with on a daily basis, its just not so bad some days.

Oh yeah, I noticed also that the pain (after eating) is MUCH worse if I have to be moving or even just standing there, the pain just gets worse and worse until I lay down.

I have no idea if the way Im describing all this is helpful...

I have tried zantac, Nothing like that helps. Im just beginning to wonder if I can get all the inflammation under control and stay that way for a period of time if it will all settle down. Right now its not too bad, and that is since I started the pentasa. Pennies are dropping, lol.

I am going to request a refill of the suppositories. Im just realising, in my case anyway, that while dr's are very educated and probably most likely do want to help me, the best they can do for me is just write out the scripts I need. I used to avoid the gp's office like the flipping plague, bc I was UTTERLY frustrated with them. Now, Im learning how to work the system to MY benefit. Learning SO much here, honestly!

Post Edited (SoIGotIBD) : 10/28/2010 9:56:38 AM (GMT-6)