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Gucci
06-11-2011, 03:39 AM
Hi people, I'm 29 and two weeks ago had a colonoscopy where biopsies were taken with cold forceps, anyway I have been diagnosed with moderate UC and a week ago I started 500mg of salofalk each morning. I noticed a difference over the week and started to have more regular bowel movements, no blood for a few days and the mucous vanished. 3 days ago I felt my glands becoming sore, my joints becoming painful and flemming up - DAMN -my UC has come back quite bad, it's like i'm urinating blood from my bottom, awful cramps and diorreah quite a few times over the past few days always not feeling like i'm finished emptying my bowels and worried to let go of gas because it may be blood. Obviously I have come down with the flu so my question is; "Is this a flare up because of the flu? Will I be getting back on track after the flu subsides?" Maybe I have a tummy bug also? Can anyone PLEASE give me their thoughts or relate to what I am going through? Also my ferritin is very low, anyone know how to make it higher? I'm not absorbing iron properly as most know with UC the bowel doesn't absorb nutrients too well.
I have started taking vitamin B,C & D, a probiotic, iron, flaxseed oil, fish oil, psyllium husk - 1t/s each morning and glucossamine.
Any thoughts on red wine? I have two glasses per night.

Gucci

jujumcm
06-12-2011, 11:10 AM
Hi gucci i seen an artical some where that said that sulphites irritate the bowel during a flare. Red wine is full of them and so are processed foods so you might want to give it a miss while you're unwell or find another drink. I tried beer on friday night and boy did i pay for it yesterday!!!! So thats out for me. Also during a flare you lymph nodes do enlarge because your body is trying to fight itself thinking whats going on down there is an infection. Im new to this too so researching it to your blue in the face is the way to get clued up with whats happening to your body. In my opinion when your symptoms change suddenely like that its time to revisit your gi. Lots of people on here had to try various drugs and combinations b4 they got it under control. About the iron, have you tried the injections?

quincy
06-12-2011, 11:45 AM
Hi..you need to get on more medications right away. I would suggest you start on at least 2000 mg daily the Salofalk and request mesalamine rectal retention enemas (Salofalk is what I use).

I personally don't believe food causes flares but it can exacerbate some symptoms...even those without UC.

Regarding wine...it's a stimulant, and can exacerbate some of the symptoms you already have. As well, metabolising wine is hard on the liver, which can be an issue for some of us on meds.

You're taking high omegas...take either the flax or fish oil, but not both. Maybe nix them for a while to see if it improves some of the diarrhea.

I would assume the c-scope biopsies would be able to tell if you have any invaders.

If your iron is low, make sure you're taking supplements that have iron in them as well as multi B which includes B12. Eating meats and well balanced meals will help.

Psyllium will help bulk the stool and probiotics will help keep the flora of your colon in balance.

q

Gucci
06-12-2011, 07:40 PM
Hi there - thanks for your reply. It has only been two weeks since my colonoscopy so I guess it's trial and error and hopefully over time i can have it under control.
No, I have not tried injections, I have an appointment with my GP at the end of the month so I am just monitoring foods and BM til then. My iron is fine, it is just my ferritin levels that seem to vary a lot. I think I get light headed because of this.
Gucci :)

Gucci
06-12-2011, 07:50 PM
Firstly, thanks for your reply. My GI is away at the moment but I will be seeing him when he returns in a month. What are these enemas you speak of? Is it to wash out the blood? I seem to lose quite a bit of blood which concerns me although I only had the colonoscopy 2 weeks ago so it's early days. What do you mean by invaders? Are the cramps normal? I sure hope to get this under control, cheers :)

quincy
06-13-2011, 11:48 AM
Hi..the enemas are retained medication into the rectum. Look up 5ASA mesalamine enemas.

UC starts at the rectum, so it's a medicaiton that should be used in my opinion.

YOu're only on one 500mg Salofalk tablet a day? Are you sure that's what the prescription says?...I've never heard of an oral 5ASa medication that low.

What's the dosage of flax and fish oil you're taking? I think you should lower it since it can cause "slippery butt"...with an inflamed butt it's difficult to hold bms...the oil will just make it sometimes worse.

You can add a fibre supplement to bulk the stool a bit and maybe help the bms to lessen.

The bleeding is part of having fragile tissue in the rectum and colon...medication will help that...but you're not on enough of it at this point. Can you maybe ask another doctor to prescribe you some enemas until your doc gets back from holidays.

Oh, and if that other doctor wants to put you on oral prednisone...please consider to NOT take it...truly.

quincy

hammer 403
06-15-2011, 06:50 AM
Hi...I have never posted before but feel compelled to tell my experience with UC. I was diagnosed over 20 years ago with ulcerative proctitis which progressed to ulcerative colitis. I tried systemic protocol with no success. I experienced total relief by using Rowasa retention enemas. The generic of Rowasa did not work for me. I continued to search for something alternatives. I tried Mutaflor (ecoli nissle) and this did not give me relief. I was in the middle of a substantial flare. Mostly few if any formed BM's with mostly bleeding and mucus. I then tried VSL#3 probiotic. I began with a dose of 2 packets per day and didn't get much benefit. After researching VSL further I decided to give it one month of an increased dosage. I increased to 8 packets per day for a month. I also added 1 heaping Tablespoon of Metagenics glutagenics for intestinal health...so I spaced out 2 packets and 1T glutagenics out 4 times a day. I experienced total remission within 2 weeks. I continued for the month then cut back to 4 packets with 1T glutagenics for another month. I now take 2 packets per day with 1T glutagenics and have been in total remission for 6 months now. I have regular daily formed BM's and feel great. I am so disappointed that my gastro didn't give this to me as an option. I was concerned about the cost of VSL but took the chance for one month and it was worth it! I hope this helps someone else because I now feel I have found what works for me!

Gucci
06-15-2011, 09:20 PM
Hi hammer 403, I will be researching VSL#3 and metagenics glutagenics, as a matter of fact I have been given a bottle of "Gut repair" and the ingredient is "glutamine" - So thank you so much for reminding me as I had put it in the back of my pantry and forgot about it with all the worry! As for the probiotics, I take one from the chemist but will need to up my dose I think. Were you put on "Salofalk" by your Gastro? Cheers for the post :)

hammer 403
06-30-2011, 12:05 PM
Hi Gucci,

Not ever put on Salofalk. I have continued to be in remission by using VSL#3 and Metagenics glutagenics. I now take one dose of two packets and a heaping tablespoon of glutagenics one time per day. As for the dosage...at least for me...I did not get any response until I upped the dose to the 8 packets per day. The VSL#3 is very potent. If you do some looking on the internet there is a lot of research out there on it. I was just so disappointed that my gastro never even considered a probiotic. I had been taking BioKult and also Klaire Labs Vital 10 but these never came close to putting me into remission. As far as I feel now...I feel no bloating from the dosage or any other potential problems. Even when I was in remission with Rowasa I always felt a soreness/aching but I feel absolutely none of that now! I continue to try to get some clues about how this could have happened to me. I pay close attention to eating right and exercise. I sometimes wonder if having been on birth control may have played a role in putting my system out of balance. It's funny but I was diagnosed shortly after stopping birth control pills.

knockneez
07-22-2011, 07:40 AM
As far as iron and getting your ferritin levels up, I have found the carbonyl form of iron to work the best. In addition to having UC I've had a gastric bypass, so my iron levels are a constant challenge for me. Also, carbonyl is very well tolerated - doesn't upset the stomach and doesn't cause constipation (not that that has ever been an issue!). Depending on what my ferritin is doing, I will take as much as 150 mg/day (I know - docs raise their eyebrows at that all the time). But I also have bloodwork frequently to keep tabs as it can go up and down quite a bit, and that way I know I'm not overdoing it.

Lindy77
07-29-2011, 09:47 AM
Quincy,
I was wondering why you said don't take the oral Prednisone?


As for Gucci- sorry you're having a difficult time. What the others are saying is helpful. You should be on a mesalmine drug. I'm on Dipentum because I can't tolerate any of the enemas and most mesalmine drugs. Dipentum works great. Good luck to you.

Gucci
10-09-2011, 07:51 PM
Hi Lindy,
thanks for your reply. I have left a msg to talk with my GI, as well as the salafolk are you saying i need something like dipentum? I researched it and it sounds like it does not have many known side effects. I don't seem to be able to get rid of all of the blood, everytime I go to the toilet I bleed, not as much as I use to but can you ever stop it completely when you have UC?
Thanks

Lindy77
10-10-2011, 08:19 AM
Yes, the blood can be completely stopped, that's when you go into a remission. And usually prednisone or IV steroids are used to induce remissions. As I'm finding out, sometimes even during remission periods you can still have some blood in your stool sporadically. Maybe it's just me, but others on here feel free to chime in.

quincy
10-10-2011, 12:18 PM
Gucci...your first post was in June, have you not seen or contacted your GI since then?

Are you still on 500 mg salofalk ... only one? daily?

You need to also get on the rectal retention enema as I suggested...so that both ends of your UC are being treated, as well...you need to be on a higher dosage of Salofalk oral.

Dipentum is another 5ASA oral med, if you have NO success with upping the Salofalk oral in conjunction with the rectal (I sure hope you request this suggestion), then consider to change to another 5ASA.

Please, please....do not choose prednisone or steroid as your choice of treatment if you're able. But, if you continue to wait and get to the point of not utilising the 5ASA meds as to how they can work for you..it might be something that you will have to have.

Regarding using natural treatments to deal with your UC...they should be in conjunction with, not in replacement of.

Probiotics are great. I don't use VSL#3, but many have success with it.

Your bleeding will stop if you've treated to heal the lining to the point where it's not friable (easily bleeds). That doesn't mean you still don't have inflammation, remember that the colon with UC heals in stages and pretty much a pattern. If you're interested, I can explain that aspect to you.

quincy

Gucci
10-11-2011, 07:47 PM
Gucci...your first post was in June, have you not seen or contacted your GI since then?

Are you still on 500 mg salofalk ... only one? daily?

You need to also get on the rectal retention enema as I suggested...so that both ends of your UC are being treated, as well...you need to be on a higher dosage of Salofalk oral.

Dipentum is another 5ASA oral med, if you have NO success with upping the Salofalk oral in conjunction with the rectal (I sure hope you request this suggestion), then consider to change to another 5ASA.

Please, please....do not choose prednisone or steroid as your choice of treatment if you're able. But, if you continue to wait and get to the point of not utilising the 5ASA meds as to how they can work for you..it might be something that you will have to have.

Regarding using natural treatments to deal with your UC...they should be in conjunction with, not in replacement of.

Probiotics are great. I don't use VSL#3, but many have success with it.

Your bleeding will stop if you've treated to heal the lining to the point where it's not friable (easily bleeds). That doesn't mean you still don't have inflammation, remember that the colon with UC heals in stages and pretty much a pattern. If you're interested, I can explain that aspect to you.

quincy



Hi there,

I am now on 3000mg, 6 per day as I saw him and it was my mistake in the state I was where I didn't listen to the tablets I was to take. Anyhow, I seem to be more regular and not so much blood. When I get ill, I bleed more, such as the flu.
I will be speaking to my GI on Monday re rectal retention enemas as I agree treating both ends to make a difference.
When you flare does the UC bleed more? I seem to have stages of diareah when I've had the flu too.
I am interested in hearing you explain the aspect, thankyou kindly :)

quincy
10-12-2011, 10:28 PM
Hi..yes, reading the instructions on the prescription is a good thing...lol. Happens to many of us.

Bleeding doesn't happen all the time with UC flaring...it's a symptom depending on the degree of inflammation.

REgarding the flu..flu is respiratory. But, I'm assuming you mean "stomach flu"...which is a commonly used term for gastro bug (meaning virus, bacteria, etc). Some use it instead of admitting to symptoms of UC, IBS or even food symptoms. I would suspect if you have diarrhea often,it's more related to UC, especially considering you've been basically untreated.

Considering UC starts at the rectum, it's only a good treatment to deal with it rectally...that can help to control flares with the enemas being increased to treat a flare and tapered by a schedule according to symptoms to a maintenance dosage. The oral med is used for treatment and dealing with above the rectum keeping symptoms down on a continual basis. That dosage can be increased during a flare and tapered eventually to a maintenance dosage.

I hope your doctor doesn't state that the enemas will be no good to you since they "don't reach high enough". I've heard that all too often.
There is a strong patient noncompliance regarding use of the enemas, because they are a commitment. Since UC starts in the rectum and all of us will have that involvement, no matter the extent upward, that statement is a deterrent rather than a fact....the oral meds deal with the upper inflammation. And use of only oral meds don't treat far enough into the rectum. Again, many patients have to request the rectals...and I know of some who have begged with the doctors eventually "giving in" or flat out refusing. sad..but it's good to know the options.

I'm heading into the 23rd year of dealing with UC since diagnosis, and if I can use the oral/rectal 5ASA meds to deal with UC...I'll do it till they no longer work. In truth, I'd much prefer NO colon rather than being on prednisone or the other immuno meds. This is based on personal, mental and physical reasons based on the known symptoms. Coping with no colon would be difficult, but not as bad as I would perceive those meds. Especially since using only 5ASA for this long.

I hope you have much improvement from the increased dosage at this point.

Are you using any probiotics or fibre supplements? They do well for many UCers.

q

Gucci
10-13-2011, 01:30 AM
Hi Quincy,
Thank you for your reply. :) You have been so informative and I appreciate that.
I actually meant a head cold flu which knocked me around for a few weeks, no energy, aches in body, snotty nose - then my diareah started too and more blood, for a few days and now it is more clay consistent with a little blood at the end of a BM. So my question was, is that a "flare" or part of the flu?
How often do you use the retention enemas and for how long have you? Are you moderate UC sufferer?
I take probiotics in a capsule, started on 45billion, upped it to 90billion per day and just recently to 125billion two days ago as I wait for my VSL#3 to be shipped as I am an Australian and just ordered it. Can you take too much of probiotic?
I take psyllium husk, a form of fibre every morning with oats and yogurt and have a well balanced diet. I take an iron sup, vitamin B mega, vitamin D & C, fish oil, glucossamine and have recently also ordered two herb capsules, one is ashwaganda and the other boswellia, they are suppose to be great anti inflammatories and recommended for UC sufferers, have you heard of these? Do you recommend anything else for me? My diagnosis is moderate and the GI report from May when I had my colonoscopy reads; "Inflammation characterized by erythema, friability, granularity and mucous was found in a continuous circumferential pattern from the rectum to the descending colon, no sites were spared. This was moderate in severity. Biopsies were taken with cold forcepts for histology. The terminal ileum appeared normal. Inflammation was found from the rectum to the descending colon secondary to left-sided Ulcerative Colitis. This was biopsied. The examined part of the ileum was normal." Since this I have been told that all biopsies were nothing to be concerned. The diagnosis, moderate UC.
Look forward to hearing from you,

Gucci :)

quincy
10-13-2011, 11:59 AM
What I would surmise is that you have NOT been treated appropriately with medications as of yet. That means oral meds for one...and rectal meds.

I was diagnosed 22 years ago this past January, my initial treatment was with Asacol oral..1600 mg daily for a month till my c-scope. I did improve somewhat with symptoms. After the scope, the retention enemas were added because of the diagnosis of UC and it took a long while for symptoms to finally quiesce.

So, the enemas should be used NIGHTLY until symptoms abate. Now remember, inflammation is in varying degrees, and it takes experience to be the teacher of what they feel like. This will include the healing process as well as the newly flaring process.

My perception and hard for many to grasp the concept....based on experience of active involvement in my own treatment using the oral/rectal meds faithfully for 22+ years....think of a thermometer going up and down, or driving in traffic. There is a constant base of activity, one has to adjust (understand) accordingly and know when to start or continue a specific action (or understand what that specific symptom means).

I've not used bosweilla or ashwaganda. I do use D (5000 IU), fish oil (low dosage)..for high can cause urgency and what I term "slippery butt syndrome" since it really lubricates stool and it's hard to hold it in sometimes. I also think too high fish oil doesn't agree with many people. It should be upped in incriments.

Glucosamine can cause stomach distress...I don't use it. If you have body pain, it could be because you're flaring and related to UC.

What did the biopsies state for the cecum?

Make sure you have a copy of your test results...meaning blood and scopes.

I take my probiotics at night on an empty stomach at least an hour or more after my meds/vitamins. They're enteric coated.
I take metamucil capsules after meals...

q

Gucci
10-13-2011, 08:26 PM
Hi Quincy,
Once again, thanks for your reply and information. It's great to talk to people with the same issues :)
How much probiotic do you take?
My cecum was normal, my UC is only from the rectum to the descending colon in a circumference. Hope that we caught it early to control. Was yours' quite advanced?
I am waiting to hear from my GI who is away til Monday :)

quincy
10-13-2011, 11:49 PM
My UC extended into the sigmoid, but not all of it... It's never been as bad as my original diagnosis.

I take Ultimate Flora Critical Care and Primadophilus Reuteri probiotics. Sometimes I double them both, but mostly it's just one of each at bedtime.

Let me know how your discussion with your GI goes.

Just to remind you regarding retention enemas...I would suggest the 5ASA (mesalamine)..whatever brand you have there. I use Salofalk enemas...you might have them there too.

q