Husbands inflammation results

[Am1025]

So my husband got all his inflammation tests back from New GI. All bloodwork was normal and ESR and SED rate were all also normal (one was actually below normal doc said, said that was great) and his fecal calprotectin test was 69. They said anything under 60 is normal. His doc was blown away by how low that was, especially based on what his old GI found in Nov on his colonoscopy. He had only had 1 entyvio infusion when tests were done so he said it's very very very unlikely that had any effect. Basically told us that was great and to keep doubt whatever he's been doing. He did go GF after last colonoscopy and made some other dietary changes for inflammation (sugar etc). Doc said he will repeat tests in 6 months to a year but was blown away by how great his inflammation markers were all around, he told us he expected at least the fecal calprotectinto be decently high. Is that normal after his findings on his last colonoscopy? Ulcers were found along with strictures. What are the chances its a freak improvement?? Lol Your personal stories are welcome! Thanks again!!

 

[Stressedmom]

Great news about his tests! I am no expert and my son is not diagnosed yet, but I just wanted to chime in and say I am so glad his bloodwork and calprotectin were so good!

 

[Am1025]

Great news about his tests! I am no expert and my son is not diagnosed yet, but I just wanted to chime in and say I am so glad his bloodwork and calprotectin were so good!

Thabk you so much!! I hope you get some answers for your son!

 

[crohnsinct]

That is a very low calpro result! Especially if your husband’s disease is in his colon which I am guessing it is given the use of Entyvio and colonoscopy. Even if his disease is in the TI that is still a good low number.

Calpro is one of the more reliable markers of inflammation in the bowel. More reliable than CRP/Sed are etc. In colonic disease the results can be quite variable in that they can swing hundreds of points but that usually happens at much higher values like over 500.

Entyvio takes a long time to kick in so it would be odd that it reduced calpro that much with just one infusion. Did he have a calpro test before colonoscopy? What was the value then?

How is he feeling? If he feels fine and all his labs are good I would be inclined to sit back and enjoy the good times.

 

[Am1025]

That is a very low calpro result! Especially if your husband’s disease is in his colon which I am guessing it is given the use of Entyvio and colonoscopy. Even if his disease is in the TI that is still a good low number.

Calpro is one of the more reliable markers of inflammation in the bowel. More reliable than CRP/Sed are etc. In colonic disease the results can be quite variable in that they can swing hundreds of points but that usually happens at much higher values like over 500.

Entyvio takes a long time to kick in so it would be odd that it reduced calpro that much with just one infusion. Did he have a calpro test before colonoscopy? What was the value then?

How is he feeling? If he feels fine and all his labs are good I would be inclined to sit back and enjoy the good times.

Thanks for the reply! No his old GI never did calpro new GI did it immediately and said he will have them done every 6 months to a year. His disease is limited to a small section of his TI. But new GI said entivyo is now being used for all areas of the gut. He said it takes longer to feel remission in certain areas but it does work, I actually posted an article about it on here. So we will see. He's never been on a biologic before, only mercaptopurine which basically allowed him to fester with bandaid on it according to new GI. My husband feels great, even after last colonoscopy in Nov showed so much inflammation in his TI, they can always access his for a few inches, we've been told this is very unusual haha! (CT entography did as well done in Jan, along with a couple strictures) but he's felt wonderful since his last flare 5 years ago, when he was finally put on anything other than entocort. Old GI really didn't treat him correctly we've learned, which makes me so mad and winders if we could've avoided a lot. He did start a GF diet and noticed he's a lot less bloated and he takes several anti-inflammatory supplements and leads a very healthy lifestyle for the most part and is very active. His doc said his may be more "Silent" which is good and bad I guess. We will see. I'm trying not to overthink it and hope entivyo is our drug!

 

[crohnsinct]

Yeah, my daughter has that more silent typeof TI disease. Her calpro was recently in the 800's and she said, "maybe a little bit more tummy pain but that's it". She has to be really on the verge of a total blockage to feel bad.

I am still puzzled by your GI's choice of Entyvio but it sounds like he/she is on top of things so that is good and I have heard it has worked in some small bowel disease it just isn't the usual choice over Stelara.

So with small bowel disease, you don't usually raise calpro very high. An elevated small bowel count that would get a GI hopping is like 150's/200's…depending on the GI. My daughter's GI sits and watches until it gets to about 500 and that drives me mad. Also, if you are going to be one of the very very few people who doesn't have calpro as a good marker it is likely you also have small bowel disease. Being a paranoid mother I might ask for a repeat calpro in 3 months rather than 6 but as a spouse…..depending on the day….

 

[Am1025]

Yeah, my daughter has that more silent typeof TI disease. Her calpro was recently in the 800's and she said, "maybe a little bit more tummy pain but that's it". She has to be really on the verge of a total blockage to feel bad.

I am still puzzled by your GI's choice of Entyvio but it sounds like he/she is on top of things so that is good and I have heard it has worked in some small bowel disease it just isn't the usual choice over Stelara.

So with small bowel disease, you don't usually raise calpro very high. An elevated small bowel count that would get a GI hopping is like 150's/200's…depending on the GI. My daughter's GI sits and watches until it gets to about 500 and that drives me mad. Also, if you are going to be one of the very very few people who doesn't have calpro as a good marker it is likely you also have small bowel disease. Being a paranoid mother I might ask for a repeat calpro in 3 months rather than 6 but as a spouse…..depending on the day….

Haha! Yea he said insurance will not approve stelara without trying a cheaper biologic 1st (of course ) but he said he's used it for TI crohns fit a few years now and it's done very well, he said the biggest thing is a lot of people are actively flaring when they're put on it and so they cant wait for it to work (4 months minimum but up to 9-12) so we chose to do that since he feels good. He also liked the fact that it doesn't carry the same "risks" as Humira etc. That it's gut limited. So we will see. If it doesn't work we will move on! I'm just mad he's not been on a biologic for the 8 years he's had it until now but oh well. Can't go back in time. I questioned entivyo as well (mildly irritated the GI ) but I researched it more and agreed with what he said after research. Plus he's a leading GI at a university here so I'll go with it. the strictures concern me greatly (my husband is never concerned ha) but his doc reminded me they will either cause a problem or they won't. But he's not operating until they do (I'm like rip them out now! ) he said he has a patient that's had them for 20 years and just now needs a bowel resection. Im hoping they are morw inflammation than fibrotic and the meds will help them My hubby's aunt also has crohn's (MIL has tested positive on blood tests as well) and had an abscess and a major resection before she was actually diagnosed (about 18 years ago) she's been in remission on Humira for 15 years with only 1 minor flare. So that gives me hope. And trust me.. I'm also forcing hubs to get reg bloods, scans and appointments even if he feels amazing! Haha! I'm very pro staying on top of it all even if you feel great, because inflammation can start creeping up before symptoms do. How's your daughter doing now?

 

[crohnsinct]

Wow! Your husband is so lucky to have such an educated advocate! Even if he feels a little henpecked. You have a great handle on the ins and outs of the disease and drugs. I was going to mention strictures being either fibrotic or inflammatory but you are already on it.

I think the GI is right in waiting to see what happens. You don't really want to start cutting because then Crohn's likes to attack the anastomosis but when necessary I wouldn't hesitate at all.

My daughter with isolated small bowel disease is doing great. She has been on Remicade for 8 years now. Some ups and downs that are easily addressed with dosing and interval but so far so good.

My other daughter with primarily colonic disease ran out of drug options and just got a temporary diversion with loop ileostomy. She will be trying RInvoq next. Seems the longer you could hold out the more drugs are developed giving you more options.

Good Luck to you and your husband!

 

[Am1025]

Wow! Your husband is so lucky to have such an educated advocate! Even if he feels a little henpecked. You have a great handle on the ins and outs of the disease and drugs. I was going to mention strictures being either fibrotic or inflammatory but you are already on it.

I think the GI is right in waiting to see what happens. You don't really want to start cutting because then Crohn's likes to attack the anastomosis but when necessary I wouldn't hesitate at all.

My daughter with isolated small bowel disease is doing great. She has been on Remicade for 8 years now. Some ups and downs that are easily addressed with dosing and interval but so far so good.

My other daughter with primarily colonic disease ran out of drug options and just got a temporary diversion with loop ileostomy. She will be trying RInvoq next. Seems the longer you could hold out the more drugs are developed giving you more options.

Good Luck to you and your husband!

Thank you so much!! I hope all goes well with your girls as well!!