HealingWell
Search Close Search
☰

Confused but patient - First post

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/17/2016 5:02 AM (GMT 0)
Hi all

I'm a 37 year old male, suffering from some form of colitis, yet to have colonoscopy (that's happening early Feb). Since July last year, I've been experiencing mucus when passing wind (to the point that I now don't even bother without doing it over the toilet), frequent BMs (3-5 per day at peak), sensation of 'fullness', and more recently, backaches, particularly at night. I've been to and fro to my doctor, hence the reason for the colonscopy referral, but since I first came down with whatever this is, things have only degenerated. A stool test confirmed some form of IBD. That's all I know. Last year was incredibly stressful for me, as my marriage ended at the start of the year. I'm 100% certain that this is absolutely related to the stress, so hoped that the christmas break would give my colon a chance to heal. Sadly, that hasn't happened.

I don't know for a fact that it's UC. It could be Crohn's, it could be something else. But what I do know is, it's been life-changing in a not nice way.

So far, the only medication I've been given that has had any effect is Metronidazole, which I'm currently on. It has reduced the frequency of my BMs (and occasionally even allowed me to pass wind for a couple of days without mucus) during the day, but things are still pretty rough in the mornings and getting worse it seems. If I have a 'bad back' night, then I'll have a 'bad BM' morning. The two are definitely related.

The diet that seems to help me the most at the moment is definitely the low residue diet. In fact, on its own, it was enough to dry out my wind for a couple of days. That seems to be the pattern with any improvements, however. They last for a couple of days, but nothing really sticks.

What's confusing me is, I see so much written about the SCD and how it can help UC (and sometimes even put it into remission). Yet whenever I eat SCD foods, if anything my symptoms get worse. SCD seems pretty much the opposite of low residue. The big trouble with low residue (apart from being boring as anything) is the fact that eventually, I started to feel low in energy, presumably from a lack of nutrients. The other issue I have with practically any diet is that I've never been great at digesting dairy, and right now it's a no no.

I wanted to join a community focused on this disease to share my recovery journey.

If anyone has any thoughts around what they think my case sounds like, I'd be interested to hear it. As I say, I'm under the care of medical professionals so am not looking for a diagnosis as such. But I really do want to know know, if the SCD is such a marvelous diet for gut healing, why does it aggravate my symptoms?
Posted 1/17/2016 10:46 AM (GMT 0)
No diet modification or medication works universally for everyone with IBD. Some see no benefit at all. So, focus on results you can see, yourself, and not the near miraculous results you might read online.

Whether you have IBD, who knows, I'd leave it to the professionals. Prior to my uc diagnosis, I regularly had a toilet full of blood (looked like a horror movie), diarrhea, and urgency.
Posted 1/17/2016 12:35 PM (GMT 0)
So far, the only medication I've been given that has had any effect is Metronidazole
Yet whenever I eat SCD foods, if anything my symptoms get worse

Diet is very important for me but the SCD never helped me much. IMO if the SCD works at all it is because it is an anti-gluten diet and gluten (wheat, rye, barley), is a very common food trigger. Along with dairy. I suggest you keep a food diary to help isolate those foods that cause problems.

No surprise that Metronidazole helped with your symptoms. about 15 percent of those with ulcerative colitis are helped by antibiotics. But they won't work forever. Antibiotics are weapons of mass destruction that kill both the good bacteria in your gut as well as the bad bacteria in your gut. That is why eventually some may develop flares or even a C Diff infection from repeated use of abx.

I suggest that you take probiotics to replenish the good bacteria in your gut. There are many threads discussing this topic. Here is a recent informative thread about diet:
https://www.healingwell.com/community/default.aspx?f=38&m=2957989

And here is one about antibiotics:
https://www.healingwell.com/community/default.aspx?f=38&m=3485660

Post Edited (Coffeemate) : 1/17/2016 5:38:27 AM (GMT-7)

Posted 1/17/2016 8:23 PM (GMT 0)
Hello & welcome!

I am sorry you're struggling with a possible flare up. I know you're looking to reduce symptoms but it's really difficult without a diagnosis. At this point, you can't know what is going to help. I will tell you that from my reading, I notice Flagyl is more likely to help Crohn's patients than UC patients - though some UCers see benefit from it too. Have you tried Imodium? What makes you think UC and not IBS or pathogen? Do you have bleeding? I am really interested to hear what you find at your scope. Did you provide stool samples?

As for SCD diet... There is something about the way the information is presented in the book and on the internet that makes it sounds very logical. Not just that but you feel like the writer is the authority and it's a legitimate medical treatment. The truth is, it's been debunked to some extent. It's worth trying but it's not for everyone. Even in cases where I've seen it help people, they were individualizing it for themselves, not following the book to a T. Also, the people using the diet, aren't using the diet alone, they are using other treatments + diet (and usually not SCD, their own diet that may have some similarities to SCD). Thirdly, I don't know of anyone who was in a severe flare up and came out of it into remission with that diet, or any diet. There are people who claim it helps them maintain remission, but maintaining and achieving are 2 very different things.

Good luck. Please check in soon :)
Posted 1/17/2016 9:39 PM (GMT 0)
Diet may help symptoms. It does not reduce inflammation.
A lot of people do well with low FODMAP diet
Posted 1/17/2016 10:23 PM (GMT 0)
You are right that this is difficult to do too much with until I know exactly what it is I'm dealing with. I spent all day yesterday back on a low residue diet, and found things a lot calmer again. This morning, my BM had more clumps of blood rather than stuff that changes the colour of the water in the toilet (I know you're all used to TMI here) which is normally a sign that things are beginning to settle again. How long it lasts, of course, remains to be seen. So far I've not managed anything more than a day or two. Yes, there is bleeding.

I haven't tried immodium or anything for the D as yet. I never really considered it to be D until recently, as I thought proper D was where the stools themselves weren't solid. That's not the case with mine. Mine are generally always normally formed. The mucus only comes in between them, and more commonly, on its own entirely.

I have had a stool test done. But it simply looked for proteins that suggested IBD. They didn't test for any specific bacteria. Apparently my blood results are all good, with one exception that my inflammation markers were slightly elevated.

I'd like to try cutting out grains, but that's going to take a LOT of work. When you're already on a restrictive diet, restricting it further makes it exponentially difficult to actually feed yourself.

I do have a food diary. I've been a bit slack with it of late, but have so far found two things that are definitely not good are dairy and fruit juice. I'm not sure which fruit it is per se. Perhaps it's sucrose fullstop, I'm not sure. It's one food that, like dairy, gives me an almost immediate churning feeling after I've swallowed. The Low FODMAP diet does look interesting as it differentiates between different types of fruit. I might do some experiments with some of those foods and see if I notice anything interesting. I'd like to be able to say "I can eat these kinds of fruits/vegetables, but not these kinds" and Low FODMAP is one that might allow me to start making that distinction. The fruit juices I'm talking about have always been combination juices (with no added sugar, mind you) so I don't know whether some would cause it more than others.

Post Edited (Gitch) : 1/17/2016 3:38:21 PM (GMT-7)

Posted 1/18/2016 12:13 AM (GMT 0)
I'm currently going through the same problem and am scheduled for the middle of Feb. How long has your symptoms been going on?
Posted 1/18/2016 12:53 AM (GMT 0)
FODMAP is not a diet but a way of eating for about a month that will help you determine what you are sensitive to. Good luck!
Posted 1/18/2016 1:03 AM (GMT 0)
It's been going on since about June/July last year.
Posted 1/18/2016 9:37 PM (GMT 0)
Things appear to have settled down a little over the last day whilst eating low FODMAP foods. More dry wind last night, and an even more settled BM this morning (and just the one, even). I'm not strictly adhering to it yet, mostly because I don't have all the foods I need to get a balanced meal without breaking some rules, but will make a shopping trip this week and grab some extras to hopefully allow me to go 100% for a bit. I have absolutely noticed that, within half an hour of eating any food not on the list of allowed foods, I'm experiencing gastric activity.

I'm feeling quite positive about all this. I know it won't address the underlying inflammation or put me into remission, but at least it will make the next two weeks (before my colonoscopy) slightly more manageable.
Posted 1/18/2016 9:57 PM (GMT 0)
"Diet may help symptoms. It does not reduce inflammation."


uh sorry, but that is totally not true -
Posted 1/18/2016 10:29 PM (GMT 0)
SCD diet ALONE has gotten me out of flares numerous times. Too many to count. But that only lasted for 10 years or so, now I do SCD plus medication and it keeps me pretty much symptom free.
Posted 1/18/2016 11:04 PM (GMT 0)
Like stud says. For me, modifying my diet is required to keep inflammation and mucus under control. the trick, and hard part, is learning what your system does and does not like anymore as it can be wide ranging.

I can induce inflation and mucus simply by eating something on my no-go list.

Unfortunately, until I was partially in remission I could not work through what works and what doesn't. You could start with a basic diet of foods you are 90+% sure work fine. And just eat them all the time for a few days. If symptoms stay the same or even improve slightly you can try and add another item. If you get mucus, D or inflammation return to your safe list until systems go back as they were. Repeat.

Working through something like this is the only way I could start to pick out what worked and what didn't for me. It was frustrating, and took a TON of patience and time. Solid stool and even semi-solid stool made it easier.

EG: My super 100% safe list. Hard boiled eggs, grapes, apples, cheddar cheese, protein powder (genuine health brand, unflavoured mixed with half water half orange juice), plain chicken or chicken soup, extremely well cooked carrots.

Looks like SCD... ha. But anyway a day of eating just these foods has my bowel in great shape.
Posted 1/19/2016 12:53 AM (GMT 0)
Thanks for the advice. I'm going to adopt a slightly different strategy to that. Because I started on low residue foods, I cut out a large majority of raw fruit and vegetables. This means that I only have a small list of foods I know work fine. So, gradually introducing more foods one by one is going to take a long time and probably leave me undernourished for a while.

Looking back through my food diary, it looks like the issue with the low residue foods I was eating was that some contained dairy, or were high FODMAP foods. Foods like asparagus, for instance, are fine on a low residue diet if well cooked, but bad on a low FODMAP program. That was one that aggravated my symptoms slightly. When I was being more adventurous with my eating over december/january I can neither find in my diary nor recall any case where a food in the low FODMAP group has caused a bad symptom for me (apart from dairy, but that's a whole other story) and yet can identify the culprit every time as a high FODMAP or dairy food. So, I think I'll switch to low FODMAP foods exclusively for a few days and see what happens.

I suspect this could calm my colon during the day and reduce mucus. The real mark of success will be when I manage to have a mucus free BM first thing in the morning. That, for me, is probably the holy grail.

Post Edited (Gitch) : 1/18/2016 5:57:04 PM (GMT-7)

Posted 1/20/2016 5:49 AM (GMT 0)
Hi all

I'm pleased to advise that avoiding all high FODMAP foods has caused a dramatic improvement of my symptoms. This morning, I had only one BM and it began with wind, rather than mucus. The mucus didn't come until after the first stool. This has not happened to me in months. I also had another BM after lunch, which began exactly the same. I can't think of the last time I only had to visit the bathroom at work to empty my bowels just once during the day.

I'd like to be able to report passing wind ordinarily has been dry all day, but I can't, as I simply haven't had any wind to pass. This was much the same yesterday evening.

I now realise the reason I saw a slight improvement after dropping back to a low residue diet was because I also avoided a lot of fruits that were high in FODMAPs.

In terms of where to from here, I'm going to continue on this diet, irrespective of what effect it might have on my colonoscopy. My original aim was simply to get better, and it still is. I need to be able to sleep right through the nights without waking up in agony because of back pain. I need to be able to have a BM in the morning without it using up countless pieces of toilet paper, and I need for my colon to feel more settled afterward. If I can achieve that through diet alone, then so be it. It's possible that I'm only helping the symptoms by removing foods that are harder to digest, and that the inflammation remains. If that's the case, then great. But now I know what foods are good for me at the moment, I don't plan on eating badly for the next two weeks just so the results look ugly.
Posted 1/21/2016 7:14 AM (GMT 0)
I will say that diet may or may not contribute to your symptoms, it depends what you are diagnosed with. I have UC and I am lactose intolerant, so I can only eat certain things because of the lactose intolerance part. The UC part allows me to eat anything else. Even with a flare up, like right now, I am eating everything I can because I am afraid of more weight lose. Check with your Dr. about diets, I honestly think it varies by each individual no matter what you may be diagnosed with. Bentyl will help with the urgency and inability to hold anything in so you can make it to the bathroom. Ask about something for gas. Try Motrin for the inflammation until you can get something stronger from your Doctor. Probiotics will help you no matter what you may or may not have. Yogurt is a good source of probiotics along with some pills from your local pharmacy. Meditate to reduce any stress in your life right now, I know that plays a huge role in my symptoms. If you are not satisfied with your diagnosis, please go for a second opinion, I have found many doctors who just do not know what they are doing, take care and I look forward to hear how you are improving.
✚ New Topic ✚ Reply