new to SCD and feeling worse

     Doc, try the Proctofoam.  Tonight will be my 4th night on it and I think it is helping.  I still have urgency and loose bowels but I haven't seen any blood.  I was using the cort suppositories at night but now use them after my a.m. bowel movements.  I cannot tolerate the enemas, they just run right out.

     I know what you mean by getting frustrated with this disease and just eating what you feel like eating.  I tend to do that too.  I pigged out this afternoon on junk food....Hershey kisses and some apple crisp...boy they felt good goin down.  Not so sure they will feel that good comin out...oh well..gotta enjoy life sometimes

I haven't tried the foams, and yes, I was always on orals while using rectal preps. Fiber seems to make me MUCH worse. I am curious about the spinach and sunflower seeds...what is that about? I'm back on probiotics...any suggestions as to which are best?

Great stuff above...I missed some of the postings as I just replied.
Yes, I have thought that since I got sick while on antibiotics that it has got to be a disturbed flora issue. I have no blood or mucous and no pain. I just developed explosive diarrhea while on the SCD, reminiscent of what happened during the antibiotics, just before the blood and mucous came. My belly was quiet for a few hours, but now I can hear it again. I am debating what to make for dinner. How do most of you do with mashed potatoes?

I think suenew61 is right on with focusing on probiotics and allowing for healing...I tried that initially and will try it again. I am just not sure what food will be best, aside from the "low residue"/clear liquids...are there any foods that actually aid in healing? Does spinach help because of its high vitamin content?

I am not sure if I need steroids, even the foams, as I have no blood or mucous and I am afebrile. I have no pain. It's nothing like when I was hospitalized. Additionally, steroids will allow the Lyme to get worse, apparently. I wish to stay as far away from immunosuppresants as I possibly can. That's why I am looking for "natural" routes of healing. I have looked at so many studies...boswellia, melatonin, special diets, fish oil, etc...

When I was put n prednisone, I got candida esophagitis...both times...AWFUL! Immunosuppression just doesn't agree with me...and, furthers my theory that my flora is screwed up and that this is not autoimmune.

Thoughts?

Great for you to get off SCD and start eating what makes you feel good. There are no rules for UC and diet but you could try the Mayoclinic site and get some ideas. If one is severely ulcerated, a hospital would likely put them on a diet of no fiber (no residue) to allow their colon time to heal and ease the pain. Mashed potatoes without skins would be served. Eat what fiber you can tolerate is my advice. VSL#3 is the most potent probiotic at the best value (so far as I can tell). It's also shipped cold in order to keep the bacteria living (they say). I can't determine anything great about spinach but it’s full of nutrients and, if well cooked, it’s easy to digest.

I have heard both good and bad things about the VSL #3. Currently, I have a fridge full of other brands. I am never sure how many to take, as there are no randomized controlled trials of these brands...and, to that end, I cannot even be sure that what is in them is the same as what's on the label, as they are not regulated pharmaceuticals. Do you all feel that you need to be on these for the rest of your lives? Why can't your bowels keep the normal flora going without taking pills full of probiotics? I have read that prebiotics help, but of course, the SCD book says they're evil. I am not sure which "science" to believe, as there just really isn't a lot of true science out there when it comes to this stuff.

Sorry if this is a bit graphic but if you Google Bristol stool scale you will get a description 1-7 of possible motions. Generally 4ish is accepted as normal. At my daughters age (17 and English) she felt very embarrassed if I kept asking her how things ‘were going’. The Bristol categories did not fully cover the days when motions were a bit fluid with more solid mixed in so we expanded it. A 5 motion was as per scale but we also had 6/5, and 5/4 as options – the first number being the most dominant. By recording simple numbers next to the food diary it made the pattern much more obvious and showed other disturbances e.g. normal illnesses (chest infections) and when she had suspected PE.
By keeping a record we could be more objective about which foods were OK and which encouraged upset. It also seemed to follow a trend dependant on how much wind she had overnight so we moved her last meal of the day to 5-6pm and after that time only low residue snacks or just fluids. We confirmed that dairy was ok but too much full fat was not so we adapted to that too. It is just trial and error but it makes it easier to track.
Sue x

Malabsorbtion can be a symptom not a disease on it's own - if your colon is rushing that may drag your general gut peristalsis into fast forward not leaving enough time for complete digestion. Also some foods may be poorly digested by many people e.g. mushrooms, and tougher foods such as sweetcorn etc. If you add a little speed these can come out looking untouched.
Sue

Yes, I was thinking that. If the colonic surface is not normal, perhaps it cannot support normal flora. I am having trouble wrapping my brain around diarrhea without blood and mucous, as "ulcerative" colitis involves ulceration of the colon...ulcers bleed.

This whole remission thing also intrigues me. I have never been in "remission", if indeed I do have ulcerative colitis. I have never had normal stool patterns since being on that antibiotic. Despite all medications, I never normalized...but, I have clearly healed my bleeding ulcerations. I saw the colonoscopy pictures...it looked like road rash from the proximal colon all the way to the distal rectum. When I was in the hospital, I was on probiotics, antibiotics, steroids and IV fluids. Who knows what healed me...and, I obviously say that loosely.

My thought is that there are many causes of diarrheal illnesses, even with biopsy findings suggestive of UC. There is good pathology literature to support the fact that not everything that looks like UC on a slide, is, in fact, UC. Perhaps that's why we all seem to respond differently.

Hi DocGp

First thing to say is I am not medically qualified - all of my opinions and suggestions are drawn from lots (and lots) of scientific reading and heavily applied common sense.

You say "I saw the colonoscopy pictures...it looked like road rash from the proximal colon all the way to the distal rectum."

That would be very unusual in true UC because it almost invariably starts at the rectal end of the colon and over time progresses up towards the small intestine end.

To go straight to pan-UC in such a short time with no previous symptoms is really unlikely. As your onset was relatively sudden and following antibiotics it is again much more in keeping with disturbed flora - although you may also have a genetic predisposition to loss of stability.

You asked how long to keep taking probiotics…………..

Many of the probiotics on the market contain lower levels of one or two bacterial strains. VSL3 has a much higher dosage of eight mixed species and as long as you build up your own tolerance (don’t jump in with massive doses immediately); the constant washing through with benign bacteria may competitively exclude other more pathogenic organisms. With a wider rang of species, dependant upon colon conditions and personal variation, when introduced different bacteria may dominate and the balance between bacteria may evolve over time as conditions change. There are several higher quality scientific research projects available on the net that have shown significant improvement and clinical remission induced by VSL3 in UC and pouchitis. Assuming things have been settled for some weeks/months in your case there may well be no reason to carry on with the probiotics. The longer a healthily balanced flora is established the more normal the environment would become and it should be possible to taper off - perhaps just keeping a (often very much cheaper) prebiotic for peace of mind.…….

Keep us posted on how you are getting on.
Sue

Well, today is such a better day!
I've been to the bathroom once, much improved (though still abnormal) quality, and with less urgency. I have increased my probiotic intake markedly, and have resumed fish oil and a mineral prep with a MVI.

I have been reading several studies today on probiotics in UC and in other conditions, and I have researched VSL #3. Interestingly, there are many clinical trials utilizing this compound (google clinical trials VSL #3 and you'll find yourself at clinicaltrials.gov). The only VSL #3 strain I am missing right now, in what I have in my fridge collection, is B. infantis (which one can get in Align).


Perhaps the flora theory really is at the crux of my matter.

Thanks for the advice...

I will keep you posted.

Just curious...do any of you suffer from muscle pain when you are touched, but not just sitting there. For example, if someone pokes you with a finger, does it hurt a great deal?

Thanks.

Ok...more questions.
After starting high dose probiotics, I am exhausted like I cannot even describe. I also felt short of breath while walking and talking last evening, and have noted some weird burning across my chest. My gut is back to pre-SCD level, but still not normal. So, has anyone else ever felt worse, tired, etc after starting the probiotics? I have read about the supposed "die off" toxins, etc, but am not sure that there is any scientific evidence for that kind of thing, nor am I sure of how it would truly make one feel. Thanks!

On asacol, fish oil, mvi, minerals, and that's it for now...