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Crohn's Disease Forum » Ulcerative Colitis Forum » Incredibly frustrating and inconsistent symptoms


12-06-2016, 08:41 PM   #1
Sarebear89
 
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Incredibly frustrating and inconsistent symptoms

Hi everyone,

So this is my first time posting and I've chosen to do it in the UC forum rather than the Crohn's forum because the Crohn's is mild and only in the lower portion of my colon (small section in descending colon, 9cm inflammation in rectum). So discussions of UC seem more relevant to me.

At the moment I've been flaring for about 3 months now, two of those were before I received a diagnosis. My trigger was going through a stressful time at work and coming down with a flu/stomach bug at the same time. A perfect storm for IBD it seems.

Before diagnosis my symptoms were mild: 2-3 bowel movements a day, sometimes diarrhea sometimes fully formed. My main symptoms were blood and mucus in the stool, which became more consistent and worse as time went on. Besides some lower back pain, slight urgency and mucus farts, I actually felt fine. All my blood markers were normal. Diagnosis was made from a faecal calprotectin stool test and colonoscopy.

I've been placed on pentasa (4g) per day and 1g nightly pentasa suppositories by my GI doc. I'm also taking a plethora of supplements including folate, multivitamins, probiotics, bosweilla, L-glutamine, tumeric, etc. I also normally eat a low carb diet similar to SCD / paleo diets due to my PCOS.

After two and half weeks of treatment my GI doc was happy with my progress and told me to come back in 6 months, but I really haven't improved that much since then.

It's now week 5 of treatment, and I'd say I'm about 80% better. I'm down to one fully formed bowel movement per day. Rarely any urgency. No mucus farts. No mucus-only bowel movements. None-mild rectal pressure. But about 50% of the time I'm still getting blood and mucus. This can range from tiny specks that most people probably wouldn't notice to quite obvious blood (but still less than before). So I think my colitis is limited to my rectum now.

It's so disheartening because I'll have like 4 days of normality and them BAM there's blood and mucus again (also doesn't help that at the moment I have a viral cold and the bleeding seems to be a bit worse). This pattern continues, one day fine and then next not, but the day after that I'll be fine again for a few days, then blood, etc. There's no rhyme or reason.

I really am trying to avoid stronger meds (steroids are not a desirable option for me as I have insulin resistance due to PCOS and as they make your blood sugar sky high they could give me type 2 diabetes and make my fertility worse). Luckily, my GI said he'd do a faecal transplant for someone like me before steroids. Still, faecal transplants are fairly new in Australia and expensive.

I guess my question is has anyone else experienced sporadic bleeding and mucus but feel fine in every other regard? How long should I realistically be looking at before the bleeding goes away (I've read that rectal inflammation/proctitis is usually the last to heal as its hardest to treat)? Should I be looking at using an enema instead if suppository? It's so frustrating. I just constantly feel like I'm taking two steps forward and one step back....

Sarah
12-06-2016, 09:44 PM   #2
ronroush7
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Hi. Does your doctor know you are having trouble with bleeding still. If not, I would see if you could see him sooner.
12-06-2016, 11:35 PM   #3
Sarebear89
 
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When I saw him last I'd only been on the medication for 2.5 weeks, so he knew then that I was still getting some mucus and bleeding. I think he thought that because I made so much progress in that 2.5 weeks that eventually the bleeding would stop?

The bleeding is still much much less than it was before I started the medication, but if it hasn't resolved past new year I will definitely go to see him in January. I guess I just have no idea of what sort of time frame I should be looking at in regards to resolving symptoms on pentasa. Most drug trials seem to last 6-8 weeks so I guess that's a fair estimate of the time a drug should take to work?

Doesn't help that I've been sick with a cold these last few days and symptoms of gotten worse (due to strain of virus on my body).
12-06-2016, 11:54 PM   #4
ronroush7
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Pentasa only hits the surface of the disease. You may need something different.
AAsk your doctor.
12-07-2016, 12:06 AM   #5
Sarebear89
 
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Pentasa only hits the surface of the disease. You may need something different.
AAsk your doctor.

Yes I think you may be right. Steroids really aren't a good option for me due to other health issues, so my GI doc said that the next thing to try would be a faecal transplant as he's had success with it. Thanks for your response!
12-07-2016, 12:07 AM   #6
ronroush7
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You are welcome.

12-28-2016, 10:26 PM   #7
Cross-stitch gal
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Sorry it's taken me so long to reply. How are you doing now?

In 2013 I switched insurance and doctors after being in a 2 year long flare where my previous doctor didn't help. After being sick for so long it took me awhile for the right medication to kick in and the bleeding and mucus to go away. It sounds like what you're doing is working. It just might take a bit for you to return to normal because you're so inflamed. I'd probably keep a watch on it for now rather than switching medications.

I too was put on steriods constantly at one point and now stay far away from them now. So, totally understand you there. Please keep us updated.
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02-13-2017, 05:08 PM   #8
crohnsinct
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Sarebear89: So sorry for this and can I say that I totally get your frustration. I could have written the same exact post about my daughter. She has had Crohn's for 5 years and as soon as she was dx'd and put on Remicade she got better. A few little, tiny blips here and there but for the most part smooth sailing.

Until about a year ago and more recently three months ago. Same as you. Lots of mucus, occasional blood (sometimes fill the toilet other times specks and everything in between). Passing mucus and stool with gas (accidents), diarrhea followed by normal stool the rest of the day.

All of this is not enough to freak that she is going off the rails but enough to frustrate the heck out of us.

She did rectal foam because the GI said she had proctosigmoiditis in addition to her Crohns. That calmed the bleeding but not the wet farts and definitely not the mucus.

Some days she is great. Others she is a mess.

She usually has a pattern. Urgent trip to the toilet with passing explosive gas and nothing but loads of mucus and maybe bits of blood. Then two or three more urgent trip right after that. First very loose BM and firming up over the course of a day.

What on earth is this? I email the GI and they are now thinking IBS. But she has no stomach pain whatsoever. I wish I could link the goings on to a specific food but they happen all hours of the day.

You had an FC? That is our next step but I wonder if rectal inflammation sheds that protein. How high was your reading?

How are you doing now? Did you change anything with your therapy?
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Daughter T dx 1/2/15 at age 11
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02-26-2017, 11:52 PM   #9
Hope345
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This is a pattern consistent with a few with UC . Our daughter was first diagnosed with Crohns but later rediagnosed with UC. Her symptoms are very close to that when she flares.,
02-27-2017, 05:01 AM   #10
ebarker2
 
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Hi everyone,
I'm also taking a plethora of supplements including folate, multivitamins, probiotics, bosweilla, L-glutamine, tumeric, etc. I also normally eat a low carb diet similar to SCD / paleo diets due to my PCOS.
Sarah
Hi Sarah,
There's a lot of subtlety and interplay between dietary nutrients, supplements, and how they are metabolised, including factors like SNPS (genetic polymorphysms) and hormesis.

In particular, there is evidence that some forms of folic acid (often synthetic or manmade folate) actually blocks the folate receptors in cells, gumming up the whole vitamin b9/b12 cycle. People with the HTMFR mutation often suffer from taking folate supplementation (see HTMFR.net for more info).

One way round this is to get folate from leafy green vegetables rather than supplements.

I strongly favour getting as many nutrients and minerals from foods rather than supplements, for many reasons. In particular i stay clear from multivitamins. I also find that its far better to shred fresh turmeric for teas and cooking flavouring rather than take supplements. in any case, with most supplements which are taken for health reasons, its good to practice hormesis which means to consume on/off say in cycles of 5 days on/2 days off. Or 10/4. Otherwise the body gets used to the compound and the effect wears off.

Finally, the quality of the food we are eating, the proportion of fats, the nature of those fats (ie quality and freshness), and a multitude of other factors related to how the foods we are eating were in turn fed have a huge impact. For instance, chickens, pork and cattle are normally fed antibiotics to promote growth. Their feed, as well as fertilisers used to grow plants, often contain significant proportions of artificial phosphates and chemicals. This goes all the way down the food chain, so by the time we eat a broiler chicken, the amount of toxins we are consuming may outway the benefit of the protein itself.

So sourcing organic/wild protein and vegetables and reducing intake of artificial chemical compounds and pesticides could play a large role in the success of a particular diet.
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Diagnosed Crohn's 2007. Pentasa and several other drugs. Began exercising and taking better care of body in 2008. Lost 45 pounds, gradually reduced junk food, alcohol and tobacco. Stopped meds 2009. Went Gluten free, lactose free. Finally tobacco and alcohol free in 2013. Biopsies and internal camera since then come back with 'no trace of disease'.
03-01-2017, 09:30 PM   #11
crohnsinct
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Thanks Hope 345

OK well it looks like we are on our way to answers. My daughter's fecal calprotectin test came back with a level of 1123 so the GI is agreeing her symptoms are not IBS. He wants to scope her and then I guess we will make some decisions.

Funny as it is she had a relatively normal BM this morning and then afternoon pure liquid and blood. Then this evening back to normalish. Just so weird.
03-08-2017, 05:13 AM   #12
ned
 
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I have just been diagnosed with colitis and its really debilitating, painful and hard to manage. Can someone give me some advice on alcohol intake and diet?
03-08-2017, 07:05 AM   #13
ronroush7
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As far as diet is concerned, you can keep a food diary to see what foods upset your stomach
I would be cautious concerning alcohol intake.

03-08-2017, 07:18 AM   #14
crohnsinct
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Most people find that during a flare or upon diagnosis a low fiber diet upsets their system least. Of course you will want to work your way toward a healthier, higher fiber diet under the guidance of a registered dietician and your GI but at the beginning most do low fiber.

As for alcohol, what meds are you on? Alcohol consumption can be dangerous for your liver on certain IBD drugs. On top of that alcohol is a major trigger for some.
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