MDS diagnosis with DDX41 Germline and Somatic

Wow, @asarnesejr! What the heck did you eat? I’m so sorry to hear you’ve been so ill with this bug or whatever it was! This has sure been the summer for intestinal issues with our foods! Yikes!

I’ve not had gut issues related to your particular intestinal bug, but I have had C.Diff, which is its own kind of hell. Anytime we have a disruption down there, it takes a toll on the gut biome. Restoring our intestines to good health is a slow and steady process.

What helped me was eating a good, non-fat, plain Greek yogurt daily. You can add a little honey, jam or fruit to make it palatable. But avoid sweetened yogurt. To much sugar makes the gut worse. I would eat about a half cup first thing in the morning. And the last thing at night.
One note that I will make. Is to AVOID taking over the counter probiotics. That can make an imbalance of too many of one type! Get your probiotics from foods. It’s more diverse. Also to avoid Kefir. (It’s too strong for right now for a weak gut…stick with yogurt).

I’m going to post a website for you with advice of what to eat and what to avoid right now! It is meant for C-Diff patients. However, it applies to anyone trying to restore their gut health! https://www.verywellhealth.com/c-diff-diet-4773546

These tips really helped get my intestines back to a predictable and healthy state again. I still eat yogurt, fresh raw, not canned, saurkraut or Kimchi daily. Being homebound because of bathroom issues is miserable. A little tip…if you haven’t done so, grab a pack of Depends. They help with any unexpected events. 😅

I hope you’re able to get back to normal soon! Let me know how you are feeling, ok?

Podcast from Mayo regarding dos and don’t for Gut health.
https://mcpress.mayoclinic.org/healthygut/dos-and-donts-for-keeping-your-microbiome-healthy/

Hi @asarnesejr! I just wanted to check in with you to see if you’re feeling better. Earlier this month you wrote about your stay in the hosptial with an intestinal bug! From news reports, you weren’t alone in your misery! Seems to be the summer for intestinal issues!

Not sure if you saw my earlier reply but I gave you a few tips on improving gut health! Here’s the link for you:
https://connect.mayoclinic.org/comment/1669854/
I hope you’re doing much better and back to feeling normal! Sending a hug!

Hi @loribmt . Things are not going well for me post Shiga Toxin. First of all, can't find any other cases in New Jersey other than mine. I hadn't traveled or eaten anything out of the ordinary.

Still having unpredictable issues with immediate diarrhea which is limiting me to traveling. The ID doctor cleared me and handed me off to the GI doctor. He put me on Diclyclomine 3x a day to stop my gut from sudden contractions to purge. I've had some breakthrough episodes so I can't depend on it as a crutch. My Hematologist said that my MDS can slow down the healing process. Most people recover within 4-5 weeks, I'm on week 7 already.

Went last Monday back to the GI doctor and he suggested to also take a daily Imodium each morning to firm things up. Also, prescribed 3 stool samples (working on it) and scheduled a colon screening (even though the CATscan looked good). That will happen on October 20th.

I am dissapointed that I will have to cancel my Disney World vacation for mid November due to the damage the Shiga Toxin has done to my intestines. Although stil 6-weeks away, I have to finalize plans by October 10th for all the non-refundable stuff (airline, events). Needless to say I am very depressed about this, as I feel my time is running out due to my MDS, and that any vacation I can afford now, I must do now because it may be my last vacation before needing a SCT. My wife and I really enjoy the Christmas Party at the Magic Kingdom.

Beside the MDS vacation urgency, I am very anxious about being on a plane for 3+ hours, Disney buses, or Skyliner with unpredictable sudden diarrhea. Don't know how long it will take me to heal and to gain confidence in my bowels again. I'm very depressed, helpless and feel my body is starting to give out and my time is running out.

@asarnesejr I sure hope you can go to Disney. I have MDS went to Disney in September. Depends , wipes and clothes in a backpack if needed. Disney will bring you happiness! Good luck

@asarnesejr I am so sorry to hear that you are struggling. I have not experienced what you described, however, my daughter was diagnosed w ulcerative colitis at age 7. This is an autoimmune disease that damages the large intestine and leads her to be vulnerable to differnet infections and imbalances, and it sounds pretty close to what you are going through. Maybe some things that have helped my daughter will help you

First, even if the infection may hopefully be cleared, it probably damaged the lining and can take quite a long time to heal. You need to be gentle w yourself and be patient. I agree w all the things Lori said to do but I would take it a step further. Keep a food diary and figure out what foods 'stay' best. Everyone knows the brat diet which is a start, but other foods will give you nutrients and strength to get back on your feet to heal better and give energy. Think soups w bone broth and lots of veggies and chicken and no noodles, then puree it smooth for even easier digestion. No raw veggies or fruit (only cooked), except if you want to throw them into a smoothie w dairy free yogurt (Kite Hill is delicious) which breaks them down for easier digestion. Nothing spicy, keep it simple. One other thing which wont be popular, but dairy is very hard to digest and gluten causes issues for many people and they dont realize it - so for a couple weeks take both of these out and see if you notice a difference. Also no added sugar, fruit is fine. And no caffeine. Dont underestimate what a nice heating pad over your tummy can do - it is calming for cramps and pains.

With my daughter we avoided trips on a plane and also long trips.3-4 days seemed best. We always stay if possible in a Homewood Suites chain - then we get a full kitchen and bring her food for her that I premade and just basiclly needed to be heated up., Eating at new restaurants w new spices and different oils etc was always disaster for her. We also can get a suite w two bathrooms and give one entirely to her so she is comfortable. Always bring a bag w snacks, clothes including shoes socks (in case it goes real bad trust me), plenty of wipes and garbage bag for soiled clothes. You can probably do it with some planning

As Lori mentioned, probiotics are not something to try right now. However, you can ask your GI doctor about these, don't just go off and buy them without asking dr, because my daughter's case is totally different. One is called sacchromyces boulardii, it isn't really a probiotic but it is a beneficial yeast - it helps by creating an environment in your intestines that are not favorable for pathogens to take hold. The other is one particular strain of probiotic that can be very helpful for infectious diarrhea like when the stomach bug goes thru the whole family. It is called L reuterri, we get a chewable form that even little kids can take made by Biogaia. When it works you an notice a difference in a day or two and the dr told my daughter she could take four chewables a day. But again i am just saying to ask your doctor about this - all of us with MDS are sensitive and everything should be run past your doctors, even stuff that is over the counter like these.

Next, not to add a new fear but it is possible to have more than one infection at a time. Sometimes things get missed on stool tests and even biopsies during a colonoscopy. Going through the harsh prep for hte scope does something inside where they can be missed on biopsies. And stool test are testing for spcific infections, not every infection possible. We used to take our daughter to Dr Kevin Cahil in NYC who was an MD famous for being a parasitologist. His method was old school, using a long qtip to take a sample directly from your butt in his office and immediately putting it under a microscope then identifying what he saw and then giving a targeted treatment. He saved my daughter a couple times. Unfortunately he passed away a few years ago, but I am mentioning because maybe you can find someone like this in Philadelphia area.

Hope these suggestions help and you get some relief - hang in there!

UPDATE: After going to the GI doctor last Monday, he gave me a script for a complete stool test to do from home and take to Labcorp. As of yesterday, some of the results have returned and I am flagged positive for C.diff.

Apparently, that first night I went to the ER they loaded me up on antibiotics for 12 hours before they determined it was Shiga Toxin and stopped all antibiotics. The Shiga Toxin cleared and is gone. However, the antibiotics gave me Thrush on my tongue and C.diff. The GI doctor is pleased since he says C.diff responds well to certain antibiotics, and that it will be out of my system in about 10-days. He feels confident that my bowels will start behaving normal and that I can make that Disney trip in mid November. I'm not so sure since I need to book by October 10th.

So the plan now is to stop the Dicyclomine and the Imodium, and start the new antibiotic. He says I should start feeling better within 3-4 days. I'm supposed to go for my 8-month checkup with my MDS doctor this Thursday, but will contact them of my situation to see if they want me there with my infection. I wanted to get a CBC before the 10th to verify that my numbers are robust enough for this vacation, even though it will still be 4-weeks away and after the Shiga Toxin my CBC number bounced back up after 2 weeks.

I don't want to be overly optimistic but I also don't want to be pessimistic. I'm not sure what I should be thinking.

Good morning, @asarnesejr Can’t believe I’m saying this but, in this case, having the diagnosis for C-Diff is good news for you! There is hope on the horizon and finger’s crossed you can get to Disneyland!

I’ve had C-diff and treated with Vancomycin. which is most likely what your doctor has prescribed. This targets the C-Diff bacteria that been causing so much ruckus for you!

If I may give you some tips as a veteran with this disease. Re-read the reply I made earlier. The suggestions have been successful for my C-diff adventure. The reply has a link to foods to eat and what to avoid.
https://connect.mayoclinic.org/comment/1669854/
Also, read through this reply again from @lhick for great info on healing the gut lining. Very helpful suggestions. https://connect.mayoclinic.org/comment/1684302/

I know this feels overwhelming but at least you know what you’re dealing with now!
So, make sure you take the Vancomycin as prescribed every 6 hours for 10 days. Don’t stop even if you start feeling better.
It’s helpful to make a little chart to have on your kitchen counter. Then you can check off the dosages as you complete each day. Though the package helps with that too. You can put the time you need to take the pill right on the outside of the blister pack.
Example, this was my schedule so that I didn’t have to get up in the middle of the night. As long as they are 6 hours apart.
11-AM
5-PM
11-PM
5-AM

You can take Vancomycin with food. So I’d always plan ahead for early morning and late night with a small portion of something like a little omelet I could reheat in the microwave or toast, half a peanut butter sandwich, etc. anything to make it easy to snack then swallow the pill.

Another really important part of the healing is eating about 1/3 cup of fat free/plain Greek yogurt (add a tiny bit of honey or jam) between those pill cycles! (At about the 3 hour point). This will help to restore some of the good bacteria and heal the gut lining.
If you consume the yogurt at the same time as the vancomycin it will kill off all the good bacteria in the yogurt. So you need to split the timing. It’s important to keep up the water intake too, to flush this medication through your kidneys. Room temp water goes down easier, you can drink more at a time and it is absorbed into the body faster.

Now, as your doctor mentioned, this may cause thrush (yeast growth) on your tongue. To help combat this, brush your tongue gently several times per day to keep the colonies from forming. You can use salt water to swish your mouth several times daily. But your doctor could order Clotrimazole Troches to have on hand. They are antifungal lozenges that melt over the tongue to kill the yeast. You do NOT have to swallow the solution. You can spit it out as the saliva builds up. It takes about 15 minutes to melt.

Wishing you great success with this!! Don’t rush anything. This will be a slow and steady return to gut health. But it is doable! Please keep us posted, ok? Hugs!

@loribmt Thanks for your support! I thought the same thing when they found C.diff after my Shiga Toxin. I felt there is a cause of my ongoing diarrhea and that it really might not be PI-IBS.

However, the GI doctor prescribed Fidaxomicin 200mg 2x for 10 days. Talking to him yesterday he feels I can still go on my vacation to Disneyworld in 4-weeks (still seems unlikely to me?) dunno.

With MDS, recovering from Shiga Toxin (tested negative), C.diff.... will my body have the stamina for a Disney vacation. I am supposed to see my MDS doctor for my 8 month checkup this Thursday, but I'm wondering if she will reschedule me because I have C.diff.

As I mentioned before I need to pay for my vacation by the 10th so I really only have a few days to figure it all out.

@asarnesejr I’m so glad your GI doctor has finally discovered what’s going on. Fidaxomicin is the other great drug to help control the C-Diff. And easier to take with just 2 doses a day. But you can still use the same guidance for what to eat or avoid to help the gut calm and heal.

I bet you’ll start seeing some ‘consistency’ within a couple of days and feel that there some hope for recovery! You’ve been suffering with this a long time! So wow, I’m really elated that there is a light at the end of the tunnel for you!

You might want to let your MDS doctor know that you have C-Diff if you have that appointment coming up soon. It may not make any difference to her other than the antibiotics and the long term infection you’ve been fighting may impact your blood numbers. That’s very normal with an infection. But she would take that into account at the appointment.

Well, I hope you see some great improvement this week so that you’re comfortable in making plans for your vacation!
Fingers crossed!! Lemme know, ok? ☺️

Hi, @asarnesejr Well, it’s been a week since we connected…nosey me wanted to check in with you!

I hope your MDS doctor’s appointment was encouraging and supportive for you to be able to go on vacation in a few weeks! You had concerns about being able to keep that appointment though. Was your doctor still able to see you? I’m also hoping the medication for C-Diff has been working for you!

And the big question: I think today was the cut-off…did you make the reservations for your holiday vacation? 🐭