Anyone with Insight (Since doctors seem to have no idea)

Hi all - I've posted a few times about my mother's situation. She was diagnosed with UC in February of this year, has had three rounds of Entyvio but developed an allergic reaction during the last infusion, and soon after was admitted to the hospital (again) - about one week ago now - due to extreme weakness. She needed three blood transfusions and her potassium levels are struggling to stay above normal. While in the hospital, she has been totally bedridden and in diapers. They did a sigmoidoscopy a day or so after she was admitted and the comparison to her colonoscopy from March indicated the UC was slightly improved. But then about three days ago she developed severe abdominal pain and they did a catscan because her belly was very distended (it has been since she got sick though so we thought this was odd). Suddenly, the catscan showed thickening of her small bowel, which indicates Crohn's or one of several other even more serious things - none of which they think very likely, but they still don't know. They put her on IV steroids and antibiotics, and no food, and she felt much better yesterday (as in no severe pain at least). Today though, during a physical therapy session of just walking the length of her room, she developed abdominal pain again and took a percoset. They're holding off on doing another scope for now and trying a different antibiotic.

I recount all of this for any insight based on patient experiences, because all I have learned throughout the process of this disease so far is that the doctors usually know MUCH less than longtime patients, and there are no rules at all when it comes to Crohns/Colitis. All of these meds and procedures seem likely to aggravate her situation even further I fear. I can't help feeling like the hospital has made her worse somehow. Any pertinent questions I should be asking would be much appreciated. Thank you.

Thanks sci-fi gal - yes, so they FINALLY did the c-diff test (I've been asking them to do it all along and they just wouldn't) and it came back negative apparently. But positive for some other bacterial infection - I just heard that today from my father and don't know what it's called yet. Hence the new antibiotics.

Other meds: uceris suppositories (but tbh she has not used these consistently, she hates them), prednisone, but she tapered off of it not long before this hospital visit, and in the hospital they started her on budesonide (sp?) but stopped because it wasn't helping I guess? Now she's on the IV steroids and they're talking about starting Remicade once she's stabilized a bit.

That's good she doesn't have c. diff., but bummer about the other infection. Make SURE she gets probiotics. I usually take Florastor, which is yeast-based so you don't have to space it apart from antibiotics. I take four per day when I'm on antibiotics. The hospitals don't usually provide them, but they let me bring my own. I just get them at Walgreens or some pharmacy.

The uceris suppositories aren't going to do any good for the small bowel inflammation. It sounds like she has Crohn's, not UC. The suppositories are good for UC. Budesonide is a steroid like prednisone, but it stays mostly in the gut, so you don't have such system-wide side effects. But it doesn't work for everyone.

I am really, really surprised they put her on Entyvio before starting Remicade. That's kind of a backwards way of doing it, but they may know something I don't (like if age is a factor, etc.)

mizzemm said...
because all I have learned throughout the process of this disease so far is that the doctors usually know MUCH less than longtime patients

Bad doctors do seem to know a lot less than long-term patients, it has to be said. I'm a long-term patient and I get very shirty now with any medical professional who patronises me about Crohn's (not that it's exactly a common thing, but it happened a couple of months ago with one of the IBD nurses - she asked if I had tried peppermint oil for severe upper left abdominal pain =_=. It eventually turned out to be shingles).

But don't underestimate good GIs 'cos they usually do know their stuff.

What I am a bit surprised by is that your mother wasn't started on Remicade first of all. (Also surprised to hear that Entyvio is supposedly cheaper than Humira. Find that a bit hard to believe, because it's certainly more expensive than Remicade: it's a much newer drug than either Remicade or Humira and newer drugs tend to be more expensive.) After all this time, Remicade is still *probably* the best biologic for IBD. Not by miles but it's been around the longest and has the most weight of evidence behind it. That said, the newest biologic, Stelara, does seem to be very promising.

If your mum does start Remicade, make sure she is given pre-meds of cortisone and an antihistamine; these will reduce the likelihood of an allergice reaction.

It can be very hard, even impossible, to distinguish between Crohn's and UC so I will give the doc the benefit of the doubt on that. But you not liking her isn't a particularly good sign. What does your mum think of her?

Anyway, hospitals are pretty chaotic places and docs/nurses rarely keep you in the loop, in my experience. Usually they are only interested in stabilising the patient and not concerned about what happens after that. Another thing I'm a bit surprised by is that an automatic testing wasn't done for c. diff. Again I can only speak from my own experience, but I had a zillion stool tests the first couple of times I stayed in hospital - all negative for pathogens. (They calmed down a bit on subsequent visits, when they finally seemed to believe it was Crohn's and not some deadly bacterial infection.) So yeah, while it sounds so obvious you shouldn't have to ask, it is important to make sure that the hospital does carry out stool tests; particularly for c. diff, which is absolutely rife in many hospitals.

Anyway, I hope your mum gets better soon. Is she still on the IV steroids? Or have they taken her off them since discovering the latest infection?

Nitpicking, but cryptosporidium is a parasite, not bacteria. It definitely could/would cause diarrhea, cramps, dehydration, etc.

Yes, it could be the cause of many of her recent symptoms, including even the small bowel inflammation seen on the scan. And once it's treated, she might return to "just" having her UC, which can be treated.

It's possible that she had this and not UC all along, but that's unlikely. A good, proper UC diagnosis should include biopsies and stool tests anyway. If those weren't done and the doctors 'jumped the gun,' so to speak, then, yeah, it's a possibility that they misdiagnosed.

http://www.mayoclinic.org/diseases-conditions/cryptosporidium/home/ovc-20272940

There are several pages in that link - be sure to read through it all.

Thanks all. I'm not calling the docs at home, I'm calling whoever is the emergency on call doc, meaning they are at the hospital. I just spoke with one before who was very good about listening though - although she couldn't give me many answers about the parasite still.

It's hard for me to get there early during the week but my dad does - he lives close to the hospital and always talks to the docs. It's just that he doesn't remember names of meds and other details all that accurately, so I usually call myself eventually.

FYI, regarding the decision to start with entyvio, I asked the doc before and she said she explained to my mom that entyvio is more targeted to the colon whereas humira and remicade work more system wide, so my mom went with entyvio partly because it was covered more fully by medicare, partly because she liked the more localized approach better....

Oh really nicecupoftea? I didn't realize that, I thought that there was a chance it could come back in the small intestine...my mom is ready for surgery yesterday ha - but she does not want the colostomy bag, and I don't think her docs would recommend surgery yet anyway, she has only tried one approach really--the entyvio/ low dose of prednisone. She wants surgery because she's just done dealing with these symptoms, but she's in really bad physical condition right now, id prefer she was a bit healthier for surgery....obviously the docs would make that call though i guess.

No, they're at the hospital - I know because they call me back from the hospital number and I can hear the background noise of the hospital - last night the answering service actually said to me "I have a Dr. williams on call at the hospital tonight." (That's my mother's personal GI). At least every time I've spoken to one so far that's been the case - it's only been three times since she's been sick that I've used that number to get info when there's been a new development I need explained.

I did know the distinction between UC and Crohns but have read many stories about people with UC getting the surgery and then having issues in the small intestine anyway so I was confused. If ithe diagnosis is that iffy, I'm not sure my mother should even chance it because I just can't imagine she'd have the strength after all of that. So many seem to get diagnosed young and have the stamina to try 100 different approaches until they find the right one....I'm afraid my mother won't, this has aged her 20 years in a matter of months.

Also, just to very quickly add, there is a minority of people with IBD (10-15%) who have a form of indeterminate IBD which shows both features of both Crohn's and UC - a diagnosis is not always possible for this reason. But if your mum's small bowel issues turn out to be Crohn's, then that will influence her colitis diagnosis as well - she will just be regarded as having Crohn's. This is basically what happened with me.

You said your mom tapered off of prednisone not long before this hospital visit? If she was on pred before Feb and for a long time, that could have led to infection with Cyrptorsporidium which led to intestinal/bowel inflammation (UC or Crohn's). So if the Cryp gets cleared up, the rest should get better. I hope she's doing better.