Enteral therapy & mucus

[Tesscorm]

Hi everyone,

My son has been on a liquid nutrition diet for about 4 weeks now (through an NG tube), up until a few days ago, he was having yellow/beige liquid BMs about 3-4 times per day (which is to be expected on this diet, up to 6-8 times per day is 'normal'). However, two days ago, he told me that he's being going a bit more often then usual (5-7 times per day) and, even after he had his BM, still felt like there was something 'more' that hadn't come out. Sometimes, he'd feel like he had to 'go', but nothing came out. Anyway, two days ago, he pushed a bit harder when he had this feeling and he discharged some white/beige mucus (not a lot) with specks of blood in the mucus. But, he has no other symptoms - no pain, nausea, tiredness (actually tons of energy), steadily gaining weight, etc.

Emailed the nurse and she said that the bowels heal 'top to bottom' and that this probably indicates that the bottom of the bowel hasn't completely healed yet. But, if this is the case, why would it start now, why hasn't the mucus been present the entire time?

Yesterday, my son told me there was more mucus but no blood.

Has this happened to anyone while on enteral diet? Could it mean that the enteral diet isn't working for him?

Thanks for reading this looong 'question' and all your help (have learned so much from everyone on this site)!

T

 

[Jennifer]

It basically sounds like he's simply being given nutrition with partial gut rest. Why hasn't he been given any medication? Exercise and diet are not enough to treat IBD. I have no idea why that's all his GI is doing but I'd seek another opinion. I know you mentioned that he doesn't have some of the "typical" symptoms of Crohn's like bleeding but he is now along with mucus which is a sign of inflammation. I was on a liquid diet for a month and wasn't allowed to eat either (didn't have the feeding tube though but was still getting nutrition through the IV) but once I got a concrete diagnosis I was then treated with medication which got my flare under control and got me out of the hospital and allowed me to eat normal foods again.

 

[Tesscorm]

The doctors at the hospital gave him two options - steroids or this liquid diet for 6 wks. They said there has been very good success in getting patients into remission with this liquid therapy alone. It certainly got rid of all his earlier symptoms immediately. But, as this mucus has just started now, I am worried that's its now not working... as you said, he didn't have blood before and now he does. Was really hoping that this was going to work right away but may have been too optimistic

We have our first follow-up apptmt next week, I guess I'll just keep monitoring him and see what happens btwn now and then.

Thanks

 

[DustyKat]

Hey Tess,

That treatment was offered to my son also, orally, but he developed further complications. At the time I did a fair bit of googling about it and the articles, linked to research, that I found did suggest that in many cases, particularly children, it is just as effective in gaining remission as Prednisone is.

Since the mucous and blood is a new symptom I would definitely have it checked out. If it can hold out until the appointment I would start keeping a diary and capture not only the nature of the new symptom but monitor if anything new is cropping up. Have a look at this, Diary Inclusions, there may be suggestions you find useful.

Dusty. xxx

 

[Tesscorm]

Thanks Dusty, the diary is great! I'm going to start using it! When my son started to get sick, repeatedly, I did start keeping track of dates of each symptom, dr apptmts, test results, etc. It made it much easier to talk to the drs at emergency when I had a list of all dates, fevers, test results, etc. I was actually thinking that I might 'record' dr apptmts. I found that when he was diagnosed, it was a bit surreal and then there was so much info thrown at us, in terminology we were unfamiliar with and it all dealt with our child that I think I've forgotten or confused some of the info.

After much research and much time here, I will be much better prepared for our upcoming apptmt. (I have to thank everyone again for all the knowledge I've gained here!)

Back to the mucus... I'm dealing with a 16 year old boy... not the most communicative creatures around (shud've just texted him my questions! LOL) But, apparently, tonight he told me 'no, the mucus isn't new, guess I forgot to tell you before...' (I'm stressing and he's forgetting!!!) Apparently, just the 'specks' of blood were new that one time. Feeling a bit better about that... as I said above, I was afraid that these were completely new symptoms, indicating the diet wasn't working... I guess if it's not new, then hopefully, its not really a problem.

T

 

[Jennifer]

Mucus isn't a non issue. It means there's inflammation. If it doesn't go away then he'll likely need to start some sort of medication regimen to get the inflammation under control before it gets out of hand. Repeated inflammation leads to scar tissue and scar tissue can lead to obstructions which can then lead to surgery or worse. Not trying to scare you, just saying that its a slippery slope.

 

[Tesscorm]

Can you suggest any questions/tests that I should discuss at our upcoming apptmt? The apptmt is to meet with his new GI (which is actually the first time we will be meeting him, a different GI than the one we dealt with while he was in the hospital), the IBD education nurse and his dietician. However, I was told that no tests would be run. While still at the hospital, we were told that, if the enteral therapy put him into remission, he would be asked to continue the enteral therapy on a maintenance basis (1/2 the dosage/amount, 4-5 nights per week) for a year (will be able to eat normally during the day). They could not answer questions regarding medication as they said they would have to see what happened over this initial 6 week period.

But, now I'm wondering how they will decide what needs to be done and how they will determine if he is in remission if they don't run tests. What tests do you or your children typically have done?

If my son does, in fact, have a mild case of Crohn's, I want to do what I can to halt it's progression... any suggestions would be appreciated!

Thanks

 

[Jennifer]

Blood work is usually done and a colonoscopy/endoscopy. The blood work will check for any inflammation etc. Check our new wiki with the blood test codes (my doc always checked for CBC and Sedrate): http://www.crohnsforum.com/wiki/Blood-test-codes-and-results-explained?page=1#post310237

Any new GI I had never treated me based off of another GI's scope results. Even if the scope was done a month ago, they would schedule another one so they could get a look inside for themselves. This new GI will decide what they want to do based off of your child's symptoms so make it clear to your son that its very important they pay close attention to how they are feeling and sadly also how their stool looks at all times and to let you know about it so you can keep a good log. Write down if he ever feels tired for how long, any flu like symptoms, any red or black stool (full on or with specks or streaks), any mucus in the stool and what color it is, any unexplained rashes on the skin, any diarrhea or constipation, any pain anywhere in the abdomen, any back pain, any joint pain, basically ANYTHING that's changed or stayed the same even if you don't think its related it could very well be.

 

[DustyKat]

Hey T,

Here is a list of questions you may like to look at in the wiki...Questions

Is your son having regular bloods done?

When Matt was first diagnosed his GI also gave him 6 weeks until he was to be reviewed. Unfortunately Matt developed complications prior to this time. However had that not happened the GI said at the 6 week mark he would look at objective and clinical markers and make a decision then as to his ongoing treatment. I took that to mean, clinical markers would be his blood results, particularly his inflammatory markers, observations (BP, temp, pulse), bowel habits, pain, weight and any other physical symptoms. Objective markers would be what he saw when he was sitting in front of him, how he looked, how he behaved, what he felt when he palpated his abdomen, that sort of thing.

I personally believe in maintenance medication as the way to keep Crohns at bay, but that is just my experience. Unfortunately my children have fistulising crohns and Matt's biopsies came back showing him to have mild to very mild crohns. I guess it only took a couple of very small but deep ulcers to create the havoc it did. My daughter has been maintenance medication since surgery 5 years ago and she has been in remission since then.

Dusty. xxx

 

[Tesscorm]

Thanks for the info. I don't expect that my son's new GI will be performing another scope. The hospital in which my son was diagnosed has a large IBD clinic with a number of GIs, nurses, dieticians and 500+ pediatric IBD patients. So, when my son was initially diagnosed, he was treated by the 'inpatient' GIs (not sure how else to classify them) and then, once he became an outpatient, he was assigned to a specific 'outpatient' GI. As all the tests were already performed by this GI's clinic and team, I don't expect that they will redo the scopes. However, before medication is given, I would like to have follow-up tests performed - I suppose the clinical markets referred to above. Your responses and links above are very helpful in helping me prepare for our upcoming apptmt.

As for regular blood tests, not so far... He's had only the initial tests during this diagnosis and this coming apptmt will be his first follow-up.

I'm hoping that the mucus is as the nurse mentioned, that the bowel heals top to bottom and that this is nothing more to be concerned about, however... I am still worried. (Unfortunately, I suppose being constantly worried is something that I'll have to learn to live with.)

Thanks,

T