The Post-FMT Files, Part Deux

[DrMike]

Post-transplant day 7: Greetings from my throne, where I'm engaging in my new pastime. At least the BMs are formed and they are offering me relief. I can go several hours between them now, and I'm no longer plagued by unrelenting tenesmus. Yesterday, I volunteered in the medical tent at a street fair and I only had to visit the porta-potties twice (once at about noon and then again just before leaving at 6pm). Both times, I produced large, soft Bristol 4s that left me feeling wonderfully empty in my abdomen. It's annoying having to go four times a day, but at least this is liveable. I had to step out of my boot camp this morning to evacuate, though. Running seems to make things descend into the sigmoid and rectum, which isn't entirely a bad thing, but it interrupted my workout.

Today will be my first day back at work. My bigger issue is that I have an underlying autoimmune disease called ankylosing spondylitis, which is kind of like rheumatoid arthritis of the spine, without putting too fine of a point on it. I usually take a TNF inhibitor called ENBREL (etanercept) once a week. It's been three weeks since the last dose and my entire back is turning into a mess of painful muscle spasms. The Celebrex is helping, but not enough. I'm going to try my utmost to make it to the weekend before taking the Enbrel again, but if these spasms don't relent a little, I may not make it that long.

[Musings]

Glad to hear that you sound like you are making progress/in recovery. My last treatment was Dificid, not a FMT, but it took several months to go only 1-2 times a day versus 3-5 times a day so while it can be annoying it should decrease with time.

~Lauren

[amyc]

As you know, Valium is great for spasms. Not so great for working hours.

Your work out regimen seems too extreme for an ankylosing spondylitis patient. You're welcome, Mom.

[amyc]

Dr. Mike, please, please share this article with other doctors.

https://www.scripps.edu/newsandviews/e_ ... janda.html

[nickii52]

So glad you doing good thanks for sharing all your knowledge

[DrMike]

Well, I seem to be the King of Bad Decisions.

On Monday of this week, I decided to take the Meningitis B vaccine while I was off immunosuppression. I reasoned that a recent study showed that it may have some protective effect against gonorrhea and, as a gay man, anything that might reduce my future risk of needing antibiotics seemed like a good gamble. I had heard that the vaccine could cause some muscle aches and joint pain, but reasoned that NSAIDs and Tylenol would get me through that. I was quite wrong. I had been gradually worstening, but the next morning (yesterday) I woke up in the worst ankylosing spondylitis flare of my life (and that is saying something). I'm amazed I made it to work at all (if I worked any other kind of job, I'd have called out). I had no choice but to restart on my ENBREL.

Still, over yesterday and today my bowel habits have been normalizing. I have two soft stools in the morning, and one or two in the afternoon. Except...I just had a kind of loose one. It smelled foul, but not like C. diff, though. Now, of course, I'm worried that I've messed the whole thing up. I was going to experiment with adding some vegetables to my diet tonight again, but now...not so much. Amazing how this leaves you paranoid.

Anyway, the back pain is rapidly improving, but that last BM is haunting me. ::sigh:: We'll see what happens.

[georgina]

Seems like the FMT was a success and you are recovering with "good and bad days" . Friendly advice : stop obsessing over the appearence of BM , you will have all kinds of abnormal BM in recovery , as long as the D is gone and the frequency is down to 1-2 , you are fine.
If you want to add vegetables back into your diet be sure to cook them very well. Vegetables that i was ok with , were: zuchhinis (steamed or grilled) , bell pepper , potatoes , carrots , parnsnip , celeriac (made vegetable soup with those) , avocado, green beans. Very hard to digest : beans , cabbage, leafy greens , peas .

[DrMike]

It was just the IBS. Semisolid again this morning.

Either way, that was the warning shot that told me not to trust raw veggies.

[OCmama]

Cooked veggies are the way to go, glad you are back at work! :-)

[roy]

No food causes a relapse but your going to suffer if you keep experimenting with your food choices!
Vegies boiled to oblivion, nothing raw!
Even then introduce one at a time and probably just a single spoonfull to start with.
If after 3 or 4 days it sits well you can add something else.
As a rule of thumb if you would not give it to a 12 month old then you don't eat it!

[NanciT]

I also wanted to add that post CDIFF I had reactions to typical OTC drugs. In fact I took an AZO(pyridium) which I had used in the past a few times. It sent me to the ER very sick. I was really shocked by this, but had been on Dificid for months and more than likely my system is taking a long time to recover.

NanciT

[amyc]

Nanci, your immune system was still freaking out, on fight or flight probably. I developed the mast cell disorder after Cdiff but had always had seasonal allergies before. Getting Cdiff pushed my system into freak out mode, and it hasn't gone away. Luckily I get great relief from OTC stuff.

[DrMike]

Well, today I had three mangoes, four peaches, a bag of prunes, and a head of cabbage. (KIDDING!)

No, I've found that sauteed onions and peppers, sauteed or steamed spinach, and cooked tomatoes are all OK. (I know onions are FODMAPS, but I don't eat a lot of them). Probably gonna try adding carrots and sweet potatoes soon, too. Maybe celeriac.

I made a delicious tamarind coconut chicken dish the other night. I chopped and browned chicken thighs and set them aside, then I sauteed onions, ginger, and garlic in some coconut oil and then added sliced bell peppers and chopped spinach, and maybe a half dozen diced grapes for sweetness until everything was cooked. I added back the chicken, seasoned it with a lime zest and the juice of that lime, a bit of mirin, sriracha, and tamari, and then added some coconut milk with tamarind paste. I simmered that down for a bit and then added just a little tapioca flour mixed with water to thicken it. Deeelicious! And didn't set off my guts.

Just had more D just now, though. But it smells like shit, not like C. diff, probably just the IBS playing up, bless its heart. Also, woke up this morning with more back pain than yesterday. FML. At least I don't have to work today, but I still am not happy overall because I can't exercise and the starches are making me fat. Literally, my pants are tight. Time to seriously cut portions. I broke my policy from age 20 (never take narcotics for AS pain) and took a 10mg Norco. Serves me right: made me dizzy and stupid and barely touched the pain. Didn't even constipate me.

[beth22]

Dr. Mike - glad you are doing better. I find that what I eat sometimes doesn't affect me adversely until about 3 days later. You might want to keep a food diary if you have the time or inclination to do so. It may give you some insight into what does not agree. I had a lot of trouble with OTC meds too, like Nancy. I used to take chewable kids vitamins and could not even tolerate those. I still don't do well with raw vegetables and fruit and it has been years for me. I, like Nancy, had been on meds for a long time and I think they contributed to the GI distress more than the actual c difficile. You had not been on meds for long, so hopefully, your recovery will be much faster.

Working also helped me. I am a teacher and when I am at work it helps to take my mind of my health. When I am at home, I tend to focus on symptoms and worry. You sound like a great cook. Hopefully, you will be able to get back to your regular diet soon, but as Roy said, try one thing at a time.

[Bobbie]

Dr. Mike.
Graphic and continual descriptions of your "bm's" belong in TMI.

You WILL recover.

PS my bill for consultation is in the mail.

PS Read the humor section and post about scopes.I dare you not to laugh.