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Posted 8/16/2013 11:17 AM (GMT 0)
This is kind of a vent/seeking advice thread.

For the last 6 months, about 85% of the time when I start eating I feel my lower gut gurgle. I also start passing very smelly, bubbly gas, have cramps and gradually get the urgency to have a BM. about half an hour later, I need to use the bathroom and about 50% of the time its diarrhea with foamy mucus (sorry, TMI). If not, it'll be yellowish stools (also with foamy mucus). This all started after my faecal transplants.

I've tried numerous herbs/medications but nothing has any noticeable effect. I've always tried to abstain from using Imodium unless absolutely necessary because I didn't want to build dependency. I work in audit so I always need to be very mobile, running around to see clients etc. As such, this urgency issue has been very disruptive. Right now is the busy tax period so things are extremely stressful, so yesterday I caved and decided to take an Imodium. Unfortunately, I still had to use the bathroom after lunch and it was yellowish diarrhea. I was so depressed the rest of the day because I really thought I, at least, had something that I could use to control my gut issues during this busy period (even if it was not the ideal solution).

But now it seems even Imodium doesn't work. I am not sure what to do from here. I am going to try some Lomotil but I fear I may be disappointed again because Imodium used to work but apparently didn't yesterday.

Sorry, I understand others have much more serious issues than me. I am grateful I still haven't seen blood, but all this work stress (I've been working till 10pm every night for the last week AND I am still going to have to work this weekend), in addition to my gut issues, is really breaking my morale.

I am finding it hard to even smile or present myself professionally infront of clients because I am so depressed inside and nervous about when the next 'attack' of urgency will arise. I've grown so thin because I am afraid to eat (I am 5 foot 6 inches, male and weigh 50kg).

Anyway, thanks for listening. No one in my family listens anymore. I feel so alone. I have no friends and my collegues obviously don't care.
Posted 8/16/2013 11:34 AM (GMT 0)
Max,

Not sure what to suggest here.

I am sorry you're going through this.

Have you given any thought to trying psyllium husk powder to firm up your stools?

You've never tried LDN right?

Posted 8/16/2013 11:57 AM (GMT 0)
I'm very sorry that you feel so alone. I'm sorry that you don't have anyone in your life who you feel you can turn to. It is hard when you feel like you're boring your family/loved ones with the details of your illness.

I have found that the Specific Carbohydrate Diet always works for me in reversing a flare and causing healing, as long as I stick with it diligently. Your fear of eating and the fact that you are so underweight really worries me. I wonder if the Specific Carbohydrate Diet might help you in improving your gastro symptoms and helping you to gain weight? Have you looked into/tried this approach?

It may also help to review your medication, it does not appear to be working! Do you have any untrialled medication options?

What happened with the faecal transplants? Were things better or worse before?

Best wishes and thinking of you...

Post Edited (tebby) : 8/16/2013 6:00:27 AM (GMT-6)

Posted 8/16/2013 12:31 PM (GMT 0)
Hi Fla,

To be honest, just knowing someone else has read my post is already a big help. I am very grateful for that.

I am trying Kefir and amitriptyline at the moment (though i dont think either will help). I've tried cymbalta, psyllium husk (capsules and powder), slippery elm (capsule, powder and lozenges), chia seeds, psyllium seed powder, acacia powder, various probiotics (mutaflor, nexabiotics, vsl#3 (capsule and sachet), inner health plus, chinese probiotics), digestive enzymes (nexazymes with 18 different enzymes, beano etc.), antibiotics (amoxicilin, clarithromycin, rifaximin), anti-fungals (nistatin), anti-spamodics (buscopan forte, bentylol, donnatab, mebeverine, trimbutine malate), supplements (l-glutamine, garlic, colostrum, ginger tea/extract, oregano oil, berbetine, activated charcoal, seriogan, peppermint tea/extract, fennel tea/extract, marshmellow tea/capsules, zinc, fish oil and others I've forgotten), questran lite, chinese herbal medicine, chinese anti-diarrhea medicine, pepto-bismol, pep-zin G.I, nexium and more.

I have acquired but not yet tried: ox bile supplements, Q-zyme ultra (with 21 different enzymes), kombucha, various chinese medicines, inulin fiber, flax seeds, olive leaf extract, coconut oil, codril silver, golden seal and more.

I never tried LDN because i think my issue is IBS rather than IBD. Would LDN help IBS?
Posted 8/16/2013 12:43 PM (GMT 0)
hi tebby. I tried the SCD diet 2 years ago for 3 weeks. back then i didnt have ibs as bad as i have it now, but i was just diagnosed with ibd so i desparately tried various 'cures' randomly as i was in panic then. As such, I am not sure if it helped in anyway, but I know I didnt feel different whilst on the diet. either way, i have, since diagnosis, eaten generally very clean and plain but no matter what i eat, my symptoms dont change. in fact sometimes if i eat something very bad, ill have an excellent nice brown formed stool the next day!

I was, physiologically worse off prior to my FT. I had ileiocal inflammation and mild proctitis. after the FT, even without medication, I had no inflammation left. however, i started having a lot of gurgling and urgency when eating. my stools also became very loose.
Posted 8/16/2013 1:25 PM (GMT 0)
Max.

I never tried LDN because i think my issue is IBS rather than IBD. Would LDN help IBS?

Yes, I believe it would help.

Shoot me an email if you like, and we can talk about it.

Posted 8/16/2013 1:46 PM (GMT 0)
What you are describing is peristalisis, the natural muscle contractions of the intestine. Have you tried bentyl or donnatell? Those drugs work to calm the spasms of the smooth muscle group.

Sue
Posted 8/16/2013 1:56 PM (GMT 0)
Yes, Sue is right, and those are great ideas.
Posted 8/16/2013 2:44 PM (GMT 0)
Have you had inflammatory markers checked like sed rate, CRP, or fecal calprotectin? I'm not entirely convinced you're in remission...

I didn't notice Levsin on your list of anti-spasmodics. I would give that a go. I see you've used Questran Lite, could be a longshot but you might give the generic cholestyramine powder a go -- I believe Questran Lite has artificial sweeteners which might cause problems by themselves.

As long as you use a reasonable dose, your body does not adapt or build up a tolerance to Imodium. Imodium has long been a drug of choice for ostomates and patients with short gut syndrome for safe, longterm use. If Imodium relieves your symptoms, it would be 100% OK to use a daily regimen of Imodium. The maximum daily dose for adults is 16 mg (8x2 mg tablet).
Posted 8/16/2013 6:26 PM (GMT 0)
How many times a day are you going, Max?

What exactly are you taking in regards to supplements....now.

What are you eating for breakfast, lunch and supper?

q
Posted 8/16/2013 9:52 PM (GMT 0)
Max,

Others may be going through worse but that by no means makes what you're going through any less significant.

Have you tried probiotics or digestive enzymes (or both)? Many find them quite helpful with symptoms you're describing.

Hope you feel better soon ((HUGS))
Posted 8/17/2013 1:14 AM (GMT 0)
Thanks for the support guys. I really can't  express how much I appreciate just having other people read my story. Thanks so so much. I know my parents are upset I am going through this, but I think they subconsciously feel if they ignore the situation, it'll go away. I think they feel upset they can't do anything to help either so they just try to blame it on anxieties.


Fla: I have a script for LDN. I remember you said to use sucrose as a filler?

Sue: Yes, I've tried numerous antispasmodics (buscopan, mebeverine, trimebutine malate, donnatab/donnatell, bentylol)

Pluot: Yes, I have had a fecal calprotection done as well as a comprehensive stool analysis. Both came back normal. Similarly, I had a colonoscopy done, scope and biopsies came back normal. I'll do some research on Levsin and see whether that may help. Regarding Imodium, Ive only been taking 1 tablet per day. Perhaps I need to take more? Previously just one a day did the trick...

Q: My frequency tends to vary a lot lately. If you only count the times when i actually discharge stool, its about 2 - 5 times (usually 3 - 4 times). if you include my just sitting on the toilet trying to strain and discharge something (but nothing comes out) its about 6 times altogether.

For supplements/medications, I am taking store bought Kefir and amitriptyline. I am also taking donnatab/donnatell atm to see if that can relax and slow my gut. As for diet, Fridays and Saturday are usually pig out sessions for me (pizza, fried.chicken). Sundays to Thursday its a clean diet, eg pan-fried fish (salmon, baramundi, blue eye cod fillet), steamed veggies, homemade dumplings (chicken, carrots, mushroom, cabbage), homemade organic spaghetti. Breakfast is almost always cereal with almond milk and two poached eggs (cereal contains, almonds, sunflower seeds, cornflakes). Everything is gluten + lactose free except for Friday and Saturday, but I dont feel any different whether I take something bad or eat cleanly.

pb4: Yes, Ive tried heaps of different probiotics but none help. Ive tried enzymes too but, depending on the brand, they either dont help or make me worse (nexazymes made me feel worse).
Posted 8/17/2013 6:14 AM (GMT 0)
Just fyi - I've had good results with psyllium stabilizing my BMs and UC pain (Metamucil or generic - not absorbed by body so I don't think there are any "tolerance" or side-effect issues).

Also, I saw a couple of dairy items in your food list.

Dairy (especially restaurant pizza - for some reason frozen pizza not so much) absolutely kills my UC. The worst flares of my life (including my first) came after eating restaurant pizza. Perhaps it is the combination of dairy and oils.
Posted 8/17/2013 9:21 PM (GMT 0)
Maybe try to stay off kefir or milk prooducts and anything that could relate to fibre foods other than foods to bulk stool to see if that helps.


q
Posted 8/17/2013 9:39 PM (GMT 0)
sgarlata: It's possible you have a histamine intolerance which causes your UC to be worse or start flaring. After researching several different things which caused me problems I was finally able to realize that I indeed have a histamine intolerance. In fact, it has been proven that many UC'rs are low on the digestive enzyme DAO, which breaks down dietary histamines. Since getting the enzyme supplement DAO, my UC has been much better than it used to be, especially allowing me to eat higher histamine foods without any problems. Pizza is high in histamines.
Posted 8/17/2013 10:51 PM (GMT 0)
Any milk products kill me. even though I can ear pizza like TMNT. So maybe lay off of that. I'm not a fan of psyllium, but it has helped others. Probiotics would probably help also.

LDN may help with IBS. I know some antidepressants help in some cases of IBS and IBD. You can also make liquid LDN at home at a much cheaper price. No filler's needed. But fix your diet before going on a new medication. Because that may be your issue since it's connected to you eating.
Posted 8/20/2013 10:24 AM (GMT 0)
How are you going, Max? I'm glad it was helpful for you to know that others were at least reading your responses. Lots of people don't seem to know how to respond to people who have a chronic illness/mention their chronic illness! I know my dad will always respond to any mention I make about my UC with his own stories about his own recent digestive issues... not so helpful but I think he means well.

Of course you're going to be anxious about what you eat when you have these kinds of body reactions to eating!

Anyway, it sounds like you have tried a lot of things to try to get things under control - you've tried many more things than I have. Hopefully some of the suggestions here will help. It looks like a laundry list of suggestions but I suppose that's better than giving up! I'm on day 5 of the SCD after a long (6 week at least, the time has blurred) flare, and am doing amazingly well (as I always do on the SCD, I should count myself lucky after reading of so many people for whom it is not helpful - sorry to read it didn't help you).

Low-dose naltrexone... I have an acquaintance with an undiagnosed/mysterious autoimmune condition who swears by it, I would definitely give it a go.

Best wishes!

Posted 8/20/2013 2:13 PM (GMT 0)
I think your underestimating how long Things will take to settle after FT. I know myself trying to introduce fibre is a slow process and I'm still not used to it after weeks.. I blow up like a balloon. Heads up on the flaxseed. First I would use the meal over the oil. The oil loses a lot of nutrients and fibre content. For GI issue I found flax meal great. Side affect, was acne. I've done some research and it's very common with flaxseed. So if you don't have issues the acne, don't let it waste. Its a good balance of soluble and insoluble fibre and no bloating. Another fibre worth checking out is rice bran fibre.. Very high in Vit E, among Tons of other things.
Posted 8/20/2013 2:25 PM (GMT 0)
Try and give things time to work, you've tried a lot in a short time. It's taken over a month with the flaxseed for me. I've had to stop because of my acne, which is how I got here to begin with 😔. Also try magnesium baths, if for none of many Many benefits it will atleast help you relax
Posted 8/22/2013 7:58 PM (GMT 0)
Hi there,

If you think IBS is triggering the gas and then IBD issues, you could try Dida tablets 30 minutes before you eat. They are really effective at stopping or significantly reducing gas.

J
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