Wife & I both having the same issues. Feeling hopeless and looking for some helpful advice.

Hi there. I was diagnosed with UC about 3 years ago. I've been on a strict AIP paleo diet for about 2 years. It's actually even stricter than that. I can't tolerate any type of food that has more than the minimal amount starch, carbs, or sugar. If I do eat some, then I immediately get gas. The next day I will have irritation and blood, and that will carry on for a while. I basically eat meat and broccoli. For a while I thought I was okay with just my diet, but lately I've been dealing with urgency, constipation, irritation and fatigue on a daily basis. I can't eat anything that I don't prepare myself, and I can't even go to the movies or something without feeling the extreme urgency and irritation in my colon. I want my life back.

What's even stranger is that my wife has began to take on the symptoms in the last year as well. She has more issues in her upper GI. However, yesterday she ate sweet potato and boom, blood in her stool.

She tested positive for H Pylori a while back, and recently was tested again and is clear. I was also tested and it came back negative.

Can anyone with similar symptoms give me some type of insight? My wife and I have been struggling for a while now and are out of answers. She can barely stomach to eat anything at all, and I continually have dull pain and irritation in my colon, along with constipation and urgency.

I take:
2 lialda every morning.
2 probitics at night
1 Canasa suppository at night

You need to up your medications as what you are doing now is not enough
Double the lialda and possibly add a steroid rectal med
You need to contact your GI and let em know what's going on
There are several dietitians who specialize in ibd
I urge you to research and find a good one as you do not need to be nearly as restrictive as you are being diet isn't a cute but can help keep symptoms at bay
If you are getting those symptoms that means you have inflammation and need to treat it
As for your wife she should book an appointment with a GI as well
I hope you guys feel better ASAP

Post Edited (Dikid) : 7/24/2015 8:27:15 AM (GMT-6)

Do any of you have experience with steroids for UC? I've always gotten the impression that I should try to stay away from them. I would also like to hear if any of you have tried Humira. My brother had severe psoriasis and was placed on Humira and now he is 100% clear. I also have psoriasis, but it is mild.

Any personal experience would be greatly appreciated.

Thank you so much for the kind responses.

You are making a very huge mistake in taking your UC so lightly. Colon damage heals slowly so the worse you let it get the harder it is to heal. Sometimes it gets bad enough it never heals. You have allowed it to get worse, probably thinking your diet is helping you while it actually isn't. The reason you can't eat many foods isn't because they make your colon worse, it is because you have allowed your colon to get worse, which makes all foods more sensitive. Where the hell is your GI, or are you trying to treat your UC basically without them or meds?

You complain about gas but broccoli is very gassy. You need to get serious about treating your UC and scrap your AIP Paleo diet, which obviously isn't working because you're getting worse. Max dose Lialda is 4 pills per day and yet you continue taking only 2 when you're getting worse. That doesn't even make sense. You need to try a short stint of Prednisone to get your UC back under control but Prednisone only works while you are on it and you can't be on it long term. You use it to get your flare under control and an effective maintenance meds treatment plan to keep it there. You don't have an effective maintenance plan right now, that's why you're getting worse so even if the prednisone helps you short term as soon as you get off you will be right back to where you are right now unless you develop an effective mtnc plan and get serious about your condition.

What probiotics are you taking? Store bought ones are usually useless. Most of us need to take at least 50 billion CFU's per day or more. VSL#3 is specifically designed for UC. This is what you need to do:


1. See your GI ASAP.

2. Get on 40 mgs per day of prednisone immediately

3. Increase your Lialda to 4 per day immediately

4. Continue with Canasa once daily

5. Add Rowasa enemas once per day

6. take at least 50 billion CFU's per day of a good probiotic

7. Get it out of your head that eating an anti-inflammatory or AIP Paleo diet is helping you because it obviously isn't. While these help some people it obviously isn't helping you. In most cases these diets are more hype than reality.


Your wife needs to see a GI ASAP and be serious about treating her condition as well

I basically second everything in Gary's post

It sounds like she only had an upper GI scope. If she has rectal bleeding, shell need a lower GI scope. These can be done in the same appointment most of the time

Seeing a GI next month is not soon enough you need to call them and tell them you are in a flare and must be seen next week
if you feel that your GI isn't treating your UC as aggressively as he should than get a second opinion ( as of now it's too mild)
Good luck

True UC is autoimmune and not a catchy disease so that fact that it seems like both you and your wife did not have the disease before you were married and both may have it now is very uncommon and suspicious. The odds of that happening are very small so it makes me wonder what is going on. It's possible that you both have some kind of pathogen that is the underlying cause of both of your problems. It's also possible that you have UC but your wife has some kind of acute colitis and not UC.

To be honest pb4, I get a little sick of you personally attacking me on a regular basis and twisting my words around. I said it was very uncommon, which it is. I didn't say it was impossible and that coincidences never happen. I was trying to be helpful with MY post. Your post is nothing but an attack on me.

Gary...maybe temper your impatience and obvious jabs based on defensiveness?


ImAite....welcome to the forum. It seems you and your wife need to have clarification of what's going on.

I'll suggest you initially go to a rectal retention enema, of either mesalamine or steroid or both.
It seems to me, through experience of gas...that some of your issues are related to rectal inflammation and food both. If you deal with the rectal inflammation, then you can determine if food is the issue. My concern is that you're lowering your food variety intake, which can cause much confusion and a LOT of frustration.

I do think probiotic taken on a more empty stomach at bedtime is the best to do. Add as Gary suggested at least 50 billion mixed probiotics.

Add a fibre supplement with your meals. Start slowly! That will help with peristalsis, strengthening your gut integrity, food for probiotics, soften/bulk stool...and a host of other goodies.

Ask for an antispasmodic to help soothe some of your gut's hissy fits...that's helpful in the overall discomfort.

A food diary is a good idea, but food symptoms can be confusing because they won't happen immediately. Don't confuse UC symptoms with food symptoms. it's a learning process.

Where exactly is your UC located...throughout or limited?

As far as your wife is concerned, she most definitely needs to be rechecked for possible bleeding ulcers (if her blood was very dark in colour) and if she has continual stomach discomfort.

She could have fissures or a hemmie. Not to assume she has UC at this point. Is she having bleeding with all bms?

Hang tough...sounds as though some things need to be sorted, which can take time.

q

Wow, pb4, if I were Gary, I'd feel attacked. Maybe you don't realize how unpleasant your recent posts have sounded.

I agree with Gary that if two spouses are diagnosed with UC in a relatively short period of time, it could be something other than coincidence and should be investigated. The incidence and prevalence of UC are low AND medical problems that have colitis-like symptoms can be caused by environmental factors such as infections, etc.

http://www.nejm.org/doi/full/10.1056/NEJMra1102942

Or maybe it's UC but both were exposed to the same triggering factor? If that were the case, it would be helpful to know what the trigger was and to explore whether getting rid of the trigger decreased symptoms or induced remission.

My husband (who doesn't have UC) and I are both from a background which puts us at higher risk for UC but if he had been diagnosed with UC within a few years of my diagnosis, I would have had to do a lot of detective work before I would accept it as pure coincidence. After all, spouses eat a lot of the same foods, travel the same places, etc.

Yes, it can and does happen but it's uncommon.

Think of it this way. How many friends/acquaintances do you have that were diagnosed with IBD within three years of your own diagnosis? For me, that number is zero and I bet it's zero, or maybe one or two for the rest of us. Assuming you have a large number of acquaintances vs. one spouse, it puts the true odds in perspective.

Anyway, for the original poster, definitely get an appointment right away even if it's with a different doctor. Flares become harder to treat over time. What might today be controlled by a short dose of steroids or more of your current meds could turn into a flare that requires hard core treatment or hospitalization. I made that mistake and now take immediate action if I show signs of flaring.

Have you and your wife had stool testing to make sure you don't have bacterial infections or parasites that are causing your problems?