Complex Case - Almost Died

[StaceyB]

Hi, everyone. I apologize in advance, as this will be a long post. My questions are below the history. Thank you for your help.

My husband was diagnosed with LC in 2014. He also has MS and is wheelchair-bound. He tried many different drugs-- anti-diarrheals, cholestid, different antihistamines, steroids, etc. After medication failure, and becoming frustrated with gastro docs, I discovered this site. Through elimination, we determined that he was allergic to corn. Corn is in everything. Just when we have the allergy figured out a manufacturer changes something, even for simple foods like chicken (corn in the plumping agents), bottled water (the bottle, electrolytes, corn filters), and worst of all, medications (including the ones used to treat the MC). But we have managed to cut down the attacks by about 80 percent of what they were using diet alone.

Because of my husband's MS, he cannot get the toilet as quickly as others, has less control of the muscles that control voiding, and cannot sense when an accident is about to occur. Often, he would wake up in the middle of what he calls an explosion and have to take a shower in the middle of the night while I helped clean him, the room, the bed, etc. Flares kill us both. He tried to use adult fecal incontinence products, hoping they would absorb everything, but they did not help (leakage, etc.).

His way of managing the flares (or fears of flares) was to sleep on the toilet, putting his head down on his wheelchair, which is horrible. I tried to get him back to a gastro doc, and he did go for one appointment but never followed up.

On Oct. 21 he started having stomach pains, I took him to the ER, and it was determined that he had some scar tissue in his intestines that caused the small bowl to twist, which led to a blockage. He ended up having a full open laparotomy. Afterwards, he got pneumonia and was put in a medically-induced coma. He made it through that and got an infected wound, which is finally under control. He is now also in rehab. My questions are:

1. Are there any products that he can wear at night that absorb everything, ones that will eliminate the need for him to take a shower if he has a flare-up.
2. Has anyone tried Ulceris (the foam) for this condition? If so, what are your thoughts?
3. Would a gastro doc be the best person for him to see at this point? Or would he be better off going to an allergist or some other specialist?

Any other recommendations you have will be much appreciated.

Thanks!

[Pebbledash]

Hi Stacey,

You and your husband have my full sympathies. You both sound very strong. My mum was the primary carer for my father, so I have an inkling of the strains you must be both under.

I am far from an expert--a relatively recent member who came here for much needed advice and support (which has been invaluable). I just had this information to pass on:

My gastroenterologist recently suggested, in the event of steroids not working, alternative treatments, viz: a regimen such as azathioprine (imuran) or a biologic agent such as infliximab/inflectra or Humira.


Just thought I'd put that out there as alternatives you might not have tried. Others are MUCH more informed than I.

I am presently on a course of Budesonide, with a very slow taper--significantly longer than the "norm"--as advised by some others on this forum, since the Budesonide has been slow to work.

Yes, your husband surely needs to see a gastroenterologist IMHO, as I think MC is far more complicated, frequently trickier to handle--even in those without your husband's complications--than we have been led to believe. You need a good consultant, but professional advice is imperative.

MC is not to be treated lightly--my original consultant was basically of the belief that it would go away on its own--but there are treatments; even these, however, need to be taken seriously and for a long enough duration, alongside removing any allergens. My case has proved very stubborn but I am better than I was two months ago before I started treatment. My inflammation levels were sky-high, and these would not go down without sustained treatment and careful diet.



Best wishes
Paul

[tex]

Hi Stacy,

I'm sorry to hear about all the problems your husband is having, that's a mighty tough situation. I agree with Paul — you might want to look at Imuran or one of the so-called biologics.

Unfortunately, I don't keep up with the latest developments in incontinence products. Hopefully, someone else will be able to offer some suggestions on that.

Several members have tried Uceris, with generally good success, but as far as I'm aware, they all used the regular oral single capsule per day dosing version. I wasn't even aware that there is a foam version available.

A gastroenterologist should be the best person to see, since allergists know nothing about IBDs. Since you bring it up though, it's possible that he might be having mast cell/histamine issues. The only doctors qualified to treat MC patients who have histamine issues are a few who have been specially trained by Dr. Maria Castells at the Brigham and Womens Hospital in boston. They understand how allergic issues can be associated with IBDs.

You can do most of the treatment without them, though, since most of the treatment will involve minimizing high-histamine foods in the diet. If that's not sufficient, taking antihistmines and/or a DAO (diamine oxidase) supplement, or chromolyn sodium might help.

I have histamine issues myself, and I control them by limiting (and sometimes avoiding) high-histamine foods.

Tex

[brandy]

Oh my gosh Stacey, you have a lot going on. I don't have any direct answers to your questions but will throw a couple
of things out there.

1. retrofit bidet on your toilet https://www.amazon.com/dp/B0045UB9HO/re ... 62742&th=1

Mom loves hers. She has late stage alzheimers. This is a pricier one but some can be had for less than
$100.00. We had to put an electrical outlet in and have a plumber install it. The cheaper ones don't require
electrical but then you don't get the heated toilet seat which Mom loves. I installed the one above
in Mom's bathroom and a $79.00 one in our guest bath but Mom does not like the cheaper one. The water is
too "rough" she says.

2. You may qualify for some home health care assistance when your husband gets out of rehab. Take advantage
of everything you qualify for while you can to give you a break. We took Mom for a checkup and
low and behold she qualified for Physical Therapy and twice a week Registered Nurse coming around to the house.
She qualified for Speech Therapist and she qualified for Occupational Therapist all through medicaid.
I was like "bring them on, send them around to the house." So Mom has a cornocopia of folks coming around
to the house.

Blessings to you and your husband.

[brandy]

Agree with Paul and Tex....since you have a tougher case you might want to talk with the doctors about Imuran.

[brandy]

Chux washable bed pads. https://avacaremedical.com/cardinal-hea ... le-bed-pad

Don't get the disposable ones. You want the larger washable bed pads. We have 4-5 on Mom's bed and
about 10 extras in the bedroom. If one gets soiled toss it in the washer and you have other's underneath.

With fecal incontinence you probably need the chux in addition to the fecal incontinence products.

The chux can also be folded up and used on his wheel chair etc to keep things contained.

Talk to the folks at the rehab center they should be able to guide you here.

[brandy]

Tex,

Uceris does apparently come in a rectal foam.

https://www.salix.com/products/uceris-rectal-foam

Stacey, This is the first the rectal foam has been talked about on the forum. Let us know if
you decide to try it and how it works out.

[brandy]

It looks like the foam covers the rectum and the sigmoid colon.

[Kilt]

While there are no known causes or cures for many of the ailments that gastroenterologists treat -- thus often leading to patient frustrations -- I certainly think your husband needs to consult with a gastroenterologist for his LC and intestinal blockage issues. An allergist may or may not be helpful, but it's worth a try if you can afford it.

Based on my personal research, my discussions with two gastroenterologists, and reading anecdotal patient reports on sites such as this one, I believe that a causal connection between MC and food allergies/intolerances is unproven and controversial. However, aside from these controversies, it does seem apparent that people with (or without) MC can have or develop intolerances or sensitivities to various food products. Therefore, if you think corn is a problem, it's just common sense to eliminate it as best you can.

One thing I believe to be fairly established is that high fiber (roughage) foods should be avoided by people with MC, because those foods can contribute to GI inflammation that produces watery diarrhea. That's the recommendation of my doctor. Corn husk is one of the biggest high fiber offenders, along with iceberg lettuce and lots of other raw vegetables and fruits. Perhaps your husband should try a very low fiber diet if he is plagued by the hallmark watery diarrhea of MC.

I have been biopsy diagnosed with LC and currently have had the diarrhea under control for more than four months via budesonide. Aside from avoiding high fiber foods, I seem to be able to eat just about anything, though I stay relatively low on gluten and lactose. Perhaps the budesonide is masking food intolerances or perhaps my LC is unrelated to food intolerances. I probably won't be able to find out until I'm off the medication.

Keep up the good fight and faith.

[Pebbledash]

Stacey--two quick follow-ups:

--My gastro also suggested Prednisone as a first step if Budesonide didn't work; if memory serves, she suggested it as a "kick-start" to lower inflammation, then to continue with Budesonide. Prednisone is a stronger, less pleasant, steroid.

--A friend of a friend recently revealed that he has (controlled) MC along with MS. After several relapses coming off of a course of Budesonide, he has been on a maintenance dose of one tablet per day for a number of years--not perfect, but stabilizes his condition.

Your situation is intolerable, in my opinion, and you must, for the sake of your own health as well as your husband's, take positive steps and rely on proper medical supervision. I say this because I witnessed what happened to my own parents--get medical and human help wherever you can. Make his rehab a turning point for you both--insist that he gets proper treatment for his MC. If you are worn out you will not be able to help him at all.

P

[brandy]

Paul said,

you must, for the sake of your own health as well as your husband's, take positive steps and rely on proper medical supervision. I say this because I witnessed what happened to my own parents--get medical and human help wherever you can. Make his rehab a turning point for you both--insist that he gets proper treatment for his MC. If you are worn out you will not be able to help him at all.

Regroup and give yourself some breaks while your husband is in rehab. The rehab may be able to arrange gastro appmt
with gastro while your husband is in rehab. The rehab may be able to arrange the transport to appointment also.
My Dad was in rehab in January and these sort of services were available but the family had to press for them.

Agree with Paul....get all the medical and human help wherever you can.

[Lisa_D]

Hi Stacey,
Sending all my best to you and your husband — it certainly sounds like a tough situation! I agree that you want to get to a GI doctor, ideally an IBD specialist if you can find one.

I am currently on weekly Humira and am responding very well to the treatment. My doctor and I also discussed Entyvio, which is a newer biologic. I’d be happy to answer any questions you or your husband might have about going the biologic route.

I know for me it was a very tough choice but it did get me out of an ugly flare.

All my Best,
Lisa

[Gabes-Apg]

Stacy
firstly big hugs to you, tough gig you are living.

some medication to reduce the accidents is a must. Definately work with GI Specialist for this
some here when the MC was at its worst used two types of medication - steroid and anti diarrheal


long term, MC is due to inflammation, rather than rely on medication to calm the inflammation, minimising inflammation triggers is successful approach. this is where diet changes come into play, and why we strongly encourage them, there is no medication that works everyone long term. in your husbands case where things are chronic, and there are other health issues having impact, you have more chance of success with medication if you make diet changes.
further to this is the journey of Dr Terry Wahls, who was wheelchair bound with MS and with diet changes very similar to what we encourage for MC, she got out of the wheel chair and was riding push bikes etc, yes there are still days symptoms return, but not in chronic state.

Further to this, we know that medication also has limited scope of success if the patient is deficient in Vit D and magnesium. sounds out there, and not acknowledged by mainstream medicine, but I can assure you it is key. there is also quality information about benefit of Vit D (and other key nutrients) on symptoms caused by the MS.

there are many members here with multiple Auto Immune issues ( i am one of them) 5 years ago I was chronically ill, multiple auto immune issues in chronic state, on temporary disability unable to work at age 44. With right diet, right supplements, lifestyle changes, I have just returned to full time work.

this may all sound overwhelming at first, but we can step you through the suggestions. take it at a pace that you and your hubby can handle.
take care

[StaceyB]

Thank you, everyone for your help. You all are wonderful. I am making an appointment with a gastro today. Imuran and the biologics sound like promising options that we need to explore. That toilet seat, too, is a great tip. The dietary recommendations we got here have been incredibly helpful, and without them he would have not survived. But, because the allergy is corn, there is just no avoiding it entirely, unfortunately. It is unbelievably pervasive-- and is in everything. I suspect that a lot of people who have IBS/IBD issues who are reacting to everything have this allergy. It's increasing in the general population every day. Corn allergy activists are trying to get corn declared a major allergy but it has been a battle. He tried Wahl's, but he reacts to so many things (for example, washes on the vegetables, all additives and preservatives in the simplest foods, packaging). He's doing vitamin patches because he can't take the supplements (they contain corn).

[Gabes-Apg]

Stacy,
Re the walhls eating plan, and ours we encourage people to adapt to suit.
Find indivdual ingredients that settle best, and stick with them.
You can avoid additives and corn easily basing eating on whole foods.
Good protein and small serves of 1-2 safe Veges.
This doesn't have to be time consuming, if you use slow cooker, and/or bulk batches and freezing.


Given the issue with corn, medications and supplements, fine tuning diet is key thing that will reduce inflammation.
Here in Aus, I use a corn free lingual Vit D, there are safe options, we just have to find them.

For many of us, we can't avoid all triggers 100% of the time. But avoiding as many as we can will help.
Worth it to avoid having to sleep on the toilet.