Blood Results Confusion. Please help!

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Lisamumofmeg

Lisamumofmeg

Joined
Feb 14, 2014
Messages
28
Hi Guys!

My DD Megan, was dx with crohns of ileum on 6 feb this year and was immediately put on modulen , she is currently on week 5 of 8. Her symptoms have improved, she no longer has mouth ulcers, tummy pain, or blood in her stool and has gained weight. All was going great until she was away in Paris with her school and became very constipated (her presentation symptoms were constipation and a perianal abscess) and found it really painful to pass stools and had to have a warm bath after each motion. When she came home she was prescribed a mild laxative, which has softened things and reduced the pain, but over the last 3 days she has been bleeding. fresh red blood, sometimes containing clots. I took her to the doctor yesterday and he did her inflammation markers which have come back at 40. Her previous bloods were 600 that was 5 weeks ago at the start of modulen. Her GI isn't worried about the bleeding and said to call him back if its still there in a week. Can someone explain the numbers to me? 600 - 40 seems a massive drop and is 40 normal. If so what could the bleeding be, if its not from her ileum. Sorry ever since her DX I've become neurotic!!!!!!
 
Hard to say. Which test was it? ESR or CRP? Also, there may be different reference ranges for the UK than the U.S...but if they are anywhere near the same a 40 sounds like it is the ESR or sed rate and that kind of a drop is very encouraging.

Sorry no idea about the blood. Encouraging that the doc isn't concerned but I would rather not have to wait a week before calling again. I think a few more days would be cause enough to call. Is he really comfortable leaving her bleeding for 10 days? Is it a lot of blood?
 
I don't really understand the test, he said her markers were at 40 I'm guessing thats collectively, from all 3 test. The other one was something....gobulin (sorry to sound daft) I tried to look it up on the net, but got even more confused.

I'm really not sure if its a lot of blood, she won't let me see. She said its on the tissue but more than streaks mainly blood when she wipes, and there has been 3 clots, one on each day. She said there are a few blood splatters on the toilet bowl and the water is kinda pink. Am I over reacting ?
 
Well blood is never something you just want to sit on and ignore but I wouldn't all out freak just yet. Bright red is terminal bleeding lower down in the tract. Could be a fissure as they can produce a good amount of blood. Especially since she was constipated and straining on her trip. Not so sure about the clots though. The important thing is the GI knows about it. Just ask her to keep a close eye on it and if it continues call him like he asked. If it gets worse I would call him sooner. Would be great if she would let you see. Kids sometimes have a very different take on what is going on.
 
Sorry, to hear of this bump in the road, Lisa. I don't think you're overreacting. If the dr is not overly concerned though, I would try to keep her stools as soft as possible over the next few days and see if it resolves. Like crohnsinct said, it could be a fissure. My son has always been constipated, and ended up with an anal fissure which is what was doing the bleeding. My son never had any clots though. I'm not sure what gobulin would be, unless it it's hemoglobin. Sorry I'm not much help. I'm still learning too! Hope this all resolves soon.
 
I would ask for copies of all labs. I like to monitor things myself so I'm not left guessing. It can also help when you need to "argue" your point.

I'm guessing "gobulin" might be immunoglobulin, or antibodies. There are 5 main types- IgA, IgM, IgG, IgD, IgE. My daughter has hers checked every few months because the doctors suspect there could be an immune deficiency.
 
It sounds like one or more fissures. This is a type of perianal disease that can be associated with active disease. I would particularly suspect fissures if she is having pain passing stool.

Treatment for fissures includes warm baths (no soap or other stuff), keeping stools soft and no straining. She can also use a heavy ointment like petroleum jelly to coat the fissure after bathing to help keep it clean and protected.
 
It wouldn’t be normal to group results together to provide a final figure so I would imagine that the 600 was an individual result. Now with that said the only inflammatory marker that I can conceivably think it would be is faecal calprotectin, was a stool sample taken?

It wouldn’t be ESR as the value is too high, it may be a CRP. I have never seen one that high but that is not to say isn’t possible. IIRC the highest I have seen on the forum is into the 400’s. On the other end of things any one of the inflammatory markers will reduce back to that figure. If it is faecal calprotectin then you are back down to normal levels. If it is CRP you aren’t yet but getting close. The variation between labs will put the upper normal level at anywhere from 6 - 12, some labs we have used have even had 15 as an upper limit.

As to the blood, with it being fresh I too would agree that may well be trauma isolated to the anus due to the constipation, as in fissure (tear). It should be easy enough for the GI to check. When is her next appointment?

Dusty. xxx
 
Thanks everyone for taking the time to help explain things and for all your support. This forum has helped me so much. Talking to other parents really helps me chill out. Some days I feel like I'm losing the plot, with worry.

Dusty - They didn't do a stool sample test this time. The last one was 11th Feb, which was when she began the module. They didn't inform me of the results though. The said it was to measure against a later sample which they would take and the end of her treatment. When we had the original diagnosis, the consultant said, when they test they look for inflammatory markers. He then went on to say Megan's were 600. I assumed that was a figure lumped together via all of the tests. After some research of my own and talking to you guy's, I think I got that wrong. Yesterday when I spoke to her consultant, he said that her result were at 40. The only tests they ran were crp, esr and haemoglobin. They said her iron levels were on the low side, but she's not Anaemic yet. I'm guess they think this may happen in the future, her others test looked good. He said her inflammation levels are 40 (whatever that means) and he said that was good. That they have reduced in the last 4 weeks. I did ask what level would be normal ( in someone that doesn't have IBD) He said anything from 0-20 I think, I find his accent hard to understand over the phone. Anyway, I think I'm going to start writing things down that I what to understand, because I always get into a bit of flap when I'm taking to the doctors.
 
Our reference ranges here only give a less than value for CRP and ESR. The lab we use at present is CRP <6, ESR <30.

So based on the upper value given (20) it could be either one of them depending on your lab. If possible obtain a hard copy of any results that Meg receives. It will make it much easier for you to track her progress and make sense of things that way. :)

Dusty. xxx
 
Definitely sounds like anal fissures. Hard stools will only make it worse. Our Ped GI has my daughter on miralax - everyday. He said theres no harm in taking everyday and soft stools will allow them to heal. Warm baths like the other said also. So sorry. I know, its hard to watch your child go through this.

As for the labs, I'm new at this too and I don't understand all the medical terms and numbers. Sounds like both of our daughters were diagnosed as the result of the same symptoms; abscess and constipation.
 
Hi Everyone, Thanks for your lovely and helpful responses. I thought I'd give an update on the Bloods.

Megan's dietician explained the most recent ones. Her CRP and ESR were both done to give them an idea if she was either experiencing a new flare or if the module was having no effect.

Its turns out I got a little confused by all the numbers. At the start of Modulen her CRP was 8 and her ESR was 28 they are now CRP 0 and ESR 14 this is considered normal.

I'm so encouraged by this news, just keeping my fingers crossed she stays there once food in reintroduced.
 
Is she on any other maintence med in addition to the EEN ?
Most relapse when food is introduced and you have to start over to wait for the maintence med to kick in ( months not days)
 
Nothing yet, she has an appointment with her GI on 5th may, I was assuming this would be the time they'd discuss maintenance medication if any. Megan's symptoms have been mild compared to others on this forum. One perianal abscess large in diameter but not deep so no fistula was formed. Once drained, this healed well and quickly. She tends to suffer with Constipation rather than d. some Fatigue and headaches, sometimes low energy. Which makes me wonder if they will keep her medication free.
 
DS only has constipation never had an abscess or fistula and he is on humira.
Crohn's left on its own allows inflammation to simmer and cause damage without causing outward signs in some kids including blood work
DS blood numbers are almost always normal .
 
Hi Lisamumofmeg, from our experience UK GIs seem to favour a 'step-up' rather than a 'top-down' strategy for treating Crohn's. My son (now 15) was diagnosed last June and has only ever taken Pentasa and EN. His symptoms were relatively mild - mouth ulcers, stomach aches after eating, diarrhoea and lack of appetite. He was put on 8 weeks of EEN last summer (no maintenance meds) which did the trick for a while but we've had a couple of minor flares since then and it looks like we're heading for another. Each time he just goes back to the shakes. We had an appointment with his IBD nurse in January and she said we might need to talk to his GI about Azathioprine at his next appointment in a couple of weeks but J has read all the info and really doesn't want to take it. It's so hard to know what to do for the best. We're all concerned that he doesn't seem to have grown much recently (although his weight is pretty good) and I hate the idea of 'simmering inflammation' but he is so reluctant to take any other medication and at his age I think it's really important that he gets a say in this.
 
It's so frustrating Megan is leaving school this year and its such an hard thing for them to do not eating for weeks at a time. I don't know how she deal with it if she went through all this for her symptoms just t o come straight back. I'm just hoping and praying that she can at least get the summer she is dreaming off. Camping with friends, Reading festival etc. I'm so worried its all going to come back and ruin her plans. At which point I think she'll lose it. She is so dead against steroids and was determined she was going to do the shakes. I'd hate it if it was all in vein. How long did your Son's good health last before he had to go back on the shakes? How's he doing at the moment? Poor kids... :(
 
We had 2-3 good months after the shakes the first time - but everyone responds differently - he never had a CRP of 0, I think anything below 8 is considered to be normal. More recently he did mostly shakes - he refused to have them at school so he had a small lunch! The nurse was happy to let him do this and it seemed to work but he's only been back to eating normally for 3 weeks and it looks like the stomach aches are back. Joe has a trip to the US planned for the summer - it's a lacrosse exchange that he's taken part in before and we're really hoping that he can do it again. He says he's happy to keep going back to the shakes but I hate not knowing what's going on inside. We're seeing his GI on April 16th and will see what he has to say. It's just so hard!!
 
DS did step up therapy as well .
He has been on pentasa, 6-mp, Mtx , and remicade prior to being placed on humira.
Under treated crohn's can cause a lot of damage and the consequences of under treated disease are much greater than the small potential risks of the drugs.
Failure to gain weight or grow automatically places kids in the moderate disease category .
 
I suggest you speak with your GI about using methotrexate. There is concern that long term use of AZA in boys/young men slightly increases their risk for cancer. There is limited data available on methotrexate but so far there doesn't appear to be the same risk as there is for AZA (azathioprine/6-MP/Imuran).

It would be very difficult if he were to seriously flare while in US. He can start and stop these meds at any time (this is generally not true of the biologics) so he may want to consider using something on a trial basis, especially before he goes to US. It takes a few weeks for either of those meds to kick in so he can't just start it the week he leaves.
 
Hi Chester31 - Just wondering how your son was getting on? How's the eating going? Megan starts the food reintroduction programme tomorrow. I'm pretty nervous. x
 
Hi Lisa - he's doing OK at the moment - eating a little at each meal but also having 4/5 shakes a day. We have a couple of weeks still before he has his GI appointment and bloods done, just hoping he grows a bit before then!! Re-introducing food is daunting. We started with simple things like chicken and rice. The only things he really seems to have a problem with are gluten and raw carrots, but everyone is different. Fingers crossed that everything goes well for Megan, please keep us updated. Anna x
 
Hi Anna, Oh how quickly things change with this disease. Megan is now having to stay on EN until she has seem her GI on Friday. She's had a bleed today quite a large one. They a re doing her bloods tomorrow and want to examine her before they let her reintroduce food. She's gutted :( I hope things go well with Joe's bloods x
 
My son also did exclusive EN for six weeks to induce remission. Once done the six weeks, he stayed on only supplemental EN as his only treatment for two years. However, some things to keep in mind...

- while he responded very well to EN and it induced clinical remission (so no outward signs) and the supplemental EN maintained this, it did not eliminate all inflammation. When we transferred to an adult GI, GI was adamant that the simmering inflammation would eventually lead to complications. I loved not having to give my son drugs and that EN seemed enough to maintain and that he didn't have complications during that time, however, it was probably a lot of luck that kept him in clinical remission with no drugs.
- when he did reintro foods, he strictly maintained supplemental EN at 50% of his 'exclusive' dosage (NO exceptions for two years!). So, he continued with 1000 ml (1500 calories) per night (he did it through NG tube overnight), 5 nights per week. As he was doing it through NG tube, taste was not an issue, so he was on an elemental formula. This allowed all nutrients to be easily absorbed and it may have been the nutrition and healing properties of the elemental formula that helped maintain his clinical remission. It seems that there are many here who, once they reintro food, eventually stop the EN entirely - this may not be the cause but, perhaps, contributes to flares returning??
- We also followed a reintro diet given to us by our dietitien and slowly tapered down the quantity of formula during the reintro period. I've explained our reintro diet in the kids' diet section, in the Kids on EN thread but, let me know if you have any questions.

AND, as has been said above, damage being done by simmering inflammation is not always apparent... there are some people who can maintain with supplemental EN alone but I don't think this is very common. (I also think compliancy for the long term can be an issue as well.) I've also read that using exclusive EN to re-induce remission a second or third time is not as successful as when used the first time - have no idea why?? So while I very much encourage using EN as a treatment option and we had a good experience with it, do be aware of the risks of using EN only.

:ghug:
 
Hi Anna!

Hope things are good with you and Joe. I haven't been on here since last week. I needed sometime to get my head around things. Megan bloods weren't as good as we had hoped. She her ESR was back up from 14 - 27, and she has been having intermittent rectal bleeding. She is now doing the food reintroduction programme, and has been prescribed asacol/ pentasa and is waiting to see and immunologist so she can begin Azathioprine.

A week on from that news. we are all feeling much better, I think my upset was sheer disappointment. That she hadn't achieved remission after 8 long weeks of no food. However, the bleeding has subsided ( nothing for nearly 2 weeks)she seems to be doing well with the food reintroduction although its early days. Aaaaand the constipation has finally improved from 1 on the Bristol stool chart to 3, which is a real achievement. Its been 1 for months.

So fingers and toes crossed things are looking good!

Thanks so much for asking. Please let me know how Joe is doing?

Lisa xxxxx
 
I know just how upsetting it can be but it's great that you have a plan. After Joe's diagnosis I was convinced that EN and diet were going to solve everything but here we are 10 months later still trying to get things under control. He's put himself back on EN at least for the next couple of weeks at least as it's school holidays. We have our GI appointment on Wednesday and I'm guessing we'll be having the Azathioprine conversation (he's already on Pentasa) although given his age and the fact that he's male I'm hoping that we can discuss the possibility of Methotrexate as an alternative. It's possible that Joe already has issues with his immune system though so that's something we also have to look into before going down the immunosuppressant route. Will let you know how we get on x
 
Megan also has suspected immune problem's. When they did her endoscopy, they found a wart in her oesophagus and have run tests before they can start her on any immunosuppressant. What makes them think that Joe has immune problems?

sounds like our kids and us have been though a very similar journey. x
 
In January when they were checking his bloods they also tested him to see if he had antibodies to chickenpox - just in case he had to start on an immune suppressant. I remember saying to the nurse that there was no way he wouldn't have antibodies as he had the worst case of chicken pox I've ever seen when he was 2. I remember it so clearly as we were on holiday in Greece at the time. He was very sick and absolutely covered in spots - we weren't sure if they would allow us back on the plane as he looked so awful. His bloods came back NEGATIVE for chicken pox antibodies - none of us can quite believe it but it means we may have to se an immunologist. Nothing is ever straightforward!! x
 
Oh wow! Bless, his Chicken Pox episode sounds like it was awful,poor boy! We hopefully there will be an alternative for him and Megan if they're unable to take the 'norm' Who wants to be normal anyway :) x
 

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