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Ulcerative Colitis
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Posted 3/30/2016 1:12 AM (GMT 0)
I would LOVE to hear from as many as possible. OLD MIKE! IMAGARDNER! IPOOP! CANADA MARK!! THE EXPERTS!!

I've had UC for 3 years.

First scope: "Indeterminate" colitis.
Second scope: Pancolitis

At its worst, I had diarrhea 15x per day. Every day. I lost a lot of blood: my hemoglobin got down to 7.9.

I took prednisone for 13 months, averaging 10mg per day. I know that's bad, so no need to comment on that. I don't seem to have any effects from it. I've been off it for several months, and I don't think I will ever go on it again.

To get this thing under control, I took 20mg prednisone, 4 Lialda, and 2 Uceris per day. Within a few days I was better. I got off prednisone. I am mostly off Uceris. I went down to 1 per day, then 1 every other day, etc. I haven't taken it in a couple weeks. I still take 3 or 4 Lialda every day. I don't know if it does anything.

1. I have no bleeding. Have not bled in a long time.
2. I have never had pain. None.
3. I have no mucous. In fact, I only saw the tiniest bit of mucous on the toilet paper 2 times in 3 years.
4. I go 6x per day. I will apologize for being so descriptive, but it comes out partially formed, like soft-serve ice cream. Occasionally, it is a little more formed than that.
5. The last 3 Saturdays in a row, when I am back home with my family from being 2.5 hours away at my job, I pooped only THREE times.
6. Urgency is still strong. I wear Depends because once in a while, I can't make it.
7. I am 6' and 145 lbs. Male. I eat all day and the volume of poop that comes out is ENORMOUS. Some days I think that one poop weighs 1 to 2 lbs. Then I have 5 more that day. I cannot gain any weight.

For 2 years, I had no gas. Now I have gas, which I think is good. When gas comes, it gives me a lot of urgency.

Between trips to the toilet, I feel totally normal. Nothing. Then like a switch, the physical anxiety in the torso starts and I know it's time to start thinking about my friend the toilet.

I have done some FMT. I will elaborate on that some other time.

I took 15 injections of Humira. No difference.

I was prescribed azathioprine. I have not taken it because of the reported side effects, and I'm not bad enough at this time.

I am reviewing the Briggs Protocol to try to incorporate that. It's rather complex to me.

PLEASE tell me anything you can. ALL input appreciated!!! LOVE reading all your comments and stories!!!
Posted 3/30/2016 1:41 AM (GMT 0)
I'm not one of the experts here but the urgency issue makes me wonder if you are dealing with and undertreating a proctitis issue. I mean undertreating because the oral meds don't do too much in dealing with that issue. I would use a mesalamine enema or cortifoam etc... to deal with this.

I can't comment too much on the other stuff but also mention that a good probiotic (like VSL 3 or Ultimate Flora) helps a lot of us as well as fiber such as Metamucil (I know that sounds strange but it can really help....but start SLOW). I'm sure some others will chime in but I definitely want to mention the rectal meds. That bottom causes a lot of aggravation and needs to be dealt directly with the medication. Good luck!
B
Posted 3/30/2016 2:29 AM (GMT 0)
you have a lot of gut microbes. upto 1/2 the dry mass of pop is microbes. so, I would not expect much from FMT.

try some probiotics to maybe get better balance.

good luck
Posted 3/30/2016 2:47 AM (GMT 0)
Urgency: start using mesalamine enemas until less/no urgency.

BM# and volume: Inflammation is probably the cause but it could also be food intolerance causing IBS-like symptoms. It is not easy to figure out all the trigger foods but start with common triggers--gluten and dairy but caffeine and chocolate are common triggers too. Fiber and fruit (peanut butter, almonds, grapes, pears, fruit juice, popcorn, chips) make my gut very unhappy. It is hard to make dietary changes because the world is full of wheat and dairy based foods. All I can say is if you see improvement follow that and see where it takes you.

Before I got a handle on my diet mod. I was amazed at the quantity of poop my gut put out. No diarrhea, just solid poop. Not constipated, like you it could be every day. But that rarely happens now unless I eat/drink something or several things that p.o. my gut.

95% curcumin has been my best supplement. Some people here take the type with pepper (piperine) but my gut hates pepper (tried it--rejected). VSL#3 probiotic was useful way back when flaring, now I use a lower dose probiotic (see sig. below). Could be good for you at this point.

To gain weight: eat meat and potatoes and add olive oil wherever possible. Potatoes have resistant starch and gut-friendly. Eat potatoes 3 meals a day, with butter, fried, etc. Eat low fiber veggies but cooked spinach is my guts best friend, cooked carrots are next best friend. No salads or raw veggies. Don't eat much sugar, it's inflammatory. As your gut heals you'll gain weight without trying.

PS Don't dive into "gluten-free" prepared foods, many of them caused me problems and most are crap.

If RX meds worked for me life would have been a lot easier. Some of us have to go a different path.
Best wishes.
Posted 3/30/2016 3:49 AM (GMT 0)
Ditto all of the above...stress on the rectal meds.
q
Posted 3/30/2016 5:51 AM (GMT 0)
hey, i'm definitely not an expert here, but i agree that the urgency sounds like there's still inflammation in the rectum. rectal meds do sound like a good idea.

plus, when was the last time you had tests done? can you do blood test, fecal calprotectin test, colonoscopy or sigmoidoscopy to see how your inflammation is doing? even if there is no visible blood, there could be occult blood, or even no blood but remaining inflammation.

if no inflammation, then your symptoms would be more ibs related. i definitely recommend trying a strict gluten free diet. if that helps, but not enough, you could try a low-FODMAPS diet. you could also try dairy free (just be careful with the additives they put in dairy-free foods, carrageenan is a bad one for us). good luck figuring this out :)
Posted 3/30/2016 10:32 AM (GMT 0)
I would also get on the azathioprine. Keeps me in remission.
Posted 3/30/2016 6:30 PM (GMT 0)
Rectal meds for sure.
Posted 3/30/2016 7:49 PM (GMT 0)
It's possible you could be experiencing IBS symptoms at this point. It's also possible you still have lingering uc inflammation. When was the last time you've had a flexible-sigmoidoscopy or colonoscopy with biopsies? A lot has improved but you're still experiencing some plausible uc symptoms that warrant further clinical investigation. It would be good to know how far and how severe the actual remaining inflammation is, and really any changes to your treatment or medication should be based entirely on that assessment and it's results. At minimum a fecal calprotein or crp blood test should be done to assess how much inflammation remains, but a scope is always much better and more accurate.

Rowasa is always a good start, but you do have pancolitis and if you have higher up inflammation then it won't all be treated by it. Scope should say.

If your scope results are bad, then starting azathioprine is less optional and more essential. Everyone is a little nervous before starting immunomodulators, I know I was. There most certainly are some scary side effects listed. For me, it helped to weigh the risks versus the benefits. about 70 percent of patients have an improvement in their uc symptoms on aza. Side effects are statically small (less than one percent experience the worst of them). A good read on risks versus benefits is this from the Crohn's and Colitis Foundation of America, which describes the side effects and the actual odds of getting them:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
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