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xmdmom

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My son's home for a couple of weeks. His weight is down to 126 lbs (6 feet) from 130. He attributed the weight loss to skipping meals at the end of the semester and was sure he'd gain weight while home. However, he has not gained any weight in the past week at home. He doesn't have any D or other Crohn's symptoms other than fatigue. He feels full after eating small portions and says no to snacks and seconds. He doesn't want to take ensure because of its chemicals. I made him some smoothies which he liked but said made him feel to full. He doesn't want to eat a lot of sweets because he thinks it's bad for Crohn's and he also says, in his experience, it has made him feel sick. He never liked fatty foods.

He'll see his pediatrician on Monday and will get labs. I'm worried his weight loss likely means he has inflammation and needs different drugs. He's currently on budesonide 9 mg and low dose naltrexone. He doesn't want to be on biologics or immunomodulators because of the side effects. He's supposed to be back at school for winterterm in a week. There's no easy access to medical care there. (He needs to pay a lot of $ to get a ride to the gastroenterologist who is 45 min away.) I want to be supportive and help him figure this out but I'm not sure how.
 
What about an elemental formula ( peptamen or e028 splash)
No chemicals?
How about a prepaid bus pass so he will see the Gi and not have the cost?
He needs a Gi period .
Explain the real risks of untreated crohn's
I think we focus on the harm but often forget to go over what can happen time and again.
 
MLP, there isn't even a bus from his college town to the city with the doctor! Does anyone actually drink elemental formulas or would that have to be via an ng? He is picky about taste. In terms of the risks of inflammation, I think it might be a good idea to get a MRE to see what's up.
 
What college town and how far is the doctor/what town/city are they in? I bet he could find a low cost alternative if he looks.....

He may find that he needs to eat more often, with smaller portions, and should try to find ones with higher nutrition/calories. Oftem colleges will have a dietician on staff for students - usually located within the health facility.
 
You are between a rock and a hard place.

I dread the day my son is an adult and can just ignore me when it comes to his calorie intake. I know sometimes my son just needs a break from this disease and I need to leave him alone about it. But I do try to explain how important the extra weight is. If he does get sick that extra weight will come in handy. But I don't necessarily think he is flaring because of the fatigue and low appetite. I think that can be normal at times.

All you can do is remind him. And try to pack in lots of calories if he is not going to eat much. (((((Hugs)))))) mom.
 
DS drinks peptamen jr daily .
I have had the e028 splash the orange isn't too bad.
Neocate will send you a six pack of samples for him to try for the e028
I know Happy on here drinks it
As do some other adults .
Most major cities have some form of transportation
If not give him gift cards for the local taxi service etc...
 
I think your son has to look realistically and seriously at the balance between untreated Crohn's and medicinal side effects. Immunosuppressants have some scary effects on paper, but for most patients they are an effective therapy with few or no problems. Combined with careful diet, which it sounds like he's doing already, there's not that much to be afraid of.

Even 5-ASA might help if he wanted the most benign thing possible that is still a well supported (in data) medication. It's what I've been using 29 years now.

I think his desires w.r.t. medication probably aren't realistic. I can relate, as I also wanted to be on zero or minimal medication at that age and well into my twenties. In the end it revealed itself to have been a bad choice even though I went symptom free for 7 years.

I'd impress upon him that untreated Crohn's and the resultant inflammation and malabsorption will be just as dangerous to his long term health as any hypothetical effects of medications or "chemicals".

His fatigue and weight loss are pretty good predictors that the labs will show inflammation, but even if they don't I wouldn't sit back and relax based solely on good blood results. I'm 6'1" and the lightest I've ever been in my adult life was 135. I looked like a skeleton with skin stretched over it. Not healthy at all. At 126 I can't imagine his Crohn's is under good control at all. It takes more than skipping meals to get there.

Is he depressed? Social changes? Break up with a love interest? Any other explanation for the severe physical condition? I lost 100 lbs in 14 months in my first divorce, the only time I've been in a condition like that not directly related to Crohn's.
 
Having adult children certainly brings on it's own challenges ! :ghug: The nutritional shakes are always the fall-back for weight gain... Is it specific chemicals he is worried about? Perhaps the more 'nutritional' or 'medical purpose' shakes (ie Modulen, peptamin, etc.) have fewer or none of these chemicals compared to the Carnation Instant Breakfast type shakes???

I agree that smaller meals and snacks may be easier for him... perhaps also higher calorie soups. Nestle also sells nutritional puddings (I've only seen it online, never in stores) - however, may contain some of the same chemicals your son is avoiding in the shakes.

Stephen's gained some weight over the last couple of months and one of the changes he's made (that he's stuck with fairly consistently) is adding greek yoghurt with a more than typical amount of protein (16 g in one small container).

Also have him ask to have vitamin levels checked at his apptmt... it could also be a deficiency that is contributing to his fatigue (ie anemia).


Re his school and location of GI, how far is he from you/home? Is it possible to arrange apptmts so that you can tie them into a visit... you could drive him and have a visit on the same trip?

Good luck!!! It's tough when you have to accept their decisions and they're not necessarily the ones you'd make!!! :ywow: :ghug: :ghug:
 
MLP- there is really no public transportation. People will give rides for $50+ dollars to the city. He doesn't drive or have a car or have friends who do. I'll see if we can get some samples.

Muppet- no depression or signs of social or psychological issues. He always was thin but now he has Crohn's on top. He was up to 135 after prednisone in the summer. He tried asacol and it didn't seem to do anything. His crohn's was in his ileum and his colon looked nl.
 
I don't know if any 5-ASA will be any good for ileal Crohn's. He's probably looking at Imuran or 6MP at least. My daughter has been on one or the other for ten years, with the only side effect of note being more colds. She did get diagnosed with ITP which I initially insisted was from the 6MP (and I still suspect) but two hematologists have told me that it's chronic and not drug induced. When we took her off in favor of Remicade for a few months, it didn't resolve the ITP, so they're probably right.

Positive effects were that she was able to maintain remission for stretches of up to 2 years without any prednisone, and we successfully used steroids to resolve intermittent flares. She went from pale as a sheet, chronically fatigued, sunken eyes and cheeks, basically looking like a homeless starving child to pink, healthy, happy, and extremely active socially and academically.

Scary drug effects are intimidating but so is life with untreated Crohn's. I think the latter is way more scary.

Whatever he does, going without any GI visits when you have a Crohn's diagnosis is lunacy. It's terribly irresponsible and dangerous, especially with severe symptoms like his weight. After a first consult and some followups in the first year, he should be on an annual visit schedule anyway, which let's be real, isn't that hard even if you have to go to some inconvenience to get a ride.
 
Tess: Schools 6.5 hours away and yes we could bring him to the doctor once a year but not for each remicade infusions if it comes to that. He is a young 19.

Muppet: Don't worry he will be seeing doctors. He has two GIs; one at home and one nearish to school at an IBD center. We really don't want imuran because of HSTCL and its other side effects. Please don't tell me the risk is infinitesimally small! We all weigh risks and benefits differently. It's hard to judge the risk of undertreated Crohn's. It's high in some but may be low in others who have mild Crohn's. It's not clear how severe my son's Crohn's is yet... which makes it difficult to know what to do, cause I do understand in many cases, treating early with top down therapy may make a difference.
 
I think at 126 lbs and 6 feet tall I'd wonder whether the "mild" ship had sailed.

I fully understand fear of the meds, but people tend to underestimate the danger of untreated Crohn's because the dangers aren't presented pharmacologically. That might actually be a great project for someone.
 
It is so incredibly tough to make these decisions... you know I'm in the same rocky boat now... :(

When was the last time he had an MRE or scope? Although Stephen just had an MRE, we are also doing scopes in Jan/Feb and I'm so hoping that the results (good or bad) will help me come to a decision re meds that I feel is 'right'. Is it possible for imaging to be done to help you determine the severity of your son's disease?
 
Oh, also wanted to share the info our GI gave re remicade vs. humira...

As you know, he wants Stephen to start remicade. At both apptmts, while he made clear he felt Stephen needed a biologic, it seemed he was only offering humira as a less preferred option??? His explanation was that his preference was simply due to the 'logistics'... patients sometimes inject the humira improperly - not getting the full dose, patients sometimes forget and take the dose a day or two late, etc. With remicade, he (GI) knows that Stephen gets the correct dose on time, bloodwork is regularly monitored and info re transfusion can be given to him from the nurse. But, other than these 'logistics', he didn't have a preference for remicade over humira.

If you ever do need to consider remicade, because of the issue with transportation, perhaps humira would be more suitable for him??
 
Xmdmom,
There is no question that these decisions are hard. When was the las time he had some imaging done? Getting imaging again may really be what you need in order to make some decisions about treatments. I am a strong believer in getting as many facts as possible before making any decisions. I think that would be the first step.
 
Are they also drawing bloods for B12, Folate, Iron Stores, Vit D, Magnesium and Zinc?

My daughter is one that is on the fine side of things and the demands of university do affect her weight and I worry about it!

Sarah is raw vegan/vegan and she has cut out most sugar and caffeine from her diet. When she is not stressed she eats copious amounts but once she hits exam time her weight starts to plummet as her appetite is the first thing that is affected. Other stressful factors will also manifest the same way. She just doesn't feel hungry and has to force herself to eat.

I don't know if stress is playing a part in his weight loss but having ileal disease I don't think you can rule out malabsorption as a cause for his low weight and therefore the need to establish the degree of disease present and ensure when bloods are drawn they are getting some idea of nutritional status.

I understand the difficulties you are facing when you have a young adult child dealing with this disease. I have found my role going from one of primary decision maker to taking a back seat. How do you help him? Keep doing what you are doing...be supportive, ensure that he knows you will always be there to help if and when needed. Continue to research on his behalf, speak to him about the things you have read and heard about. If you feel something is of importance but he is not open to discussion then print out the information or provide him with websites and just say, please read this and seriously consider it. If medication is not on the agenda then compromise needs to be made and by that I mean one thing must exchanged for another...no medication = heightened and regular monitoring of the disease via bloods, imaging and scopes. I know all of this is all very well in a perfect world and in that saying that the most important thing of all is to keep lines of communication open and this is where compromise on our part is required. We may not like the decisions they may make but we can only do our best in trying to steer them in the right direction and by providing them with all the information and knowledge at our disposal but the decisions are theirs to make.

Good luck with the consult tomorrow!

Dusty. xxx
 
My son has deferred to me regarding medical decisions thus far because of my medical expertise. We have yet to get to a place where we disagree on treatment. Yes I am doing what I can to provide him information and support.

He takes vit b12, iron and vitamin D but hasn't gotten them rechecked yet. His Hgb was up a point in October. He has no diarrhea at all right now but yes I guess he could still have some malabsorption.

I think he missed more meals at school than he first admitted, and then perhaps got used to eating less. Whether the missing meals was due to Crohn's and/or stress at the end of the semester, I'm not sure yet. Since the blood draw, he seems to be taking eating more seriously and recognizes that he needs to eat even if he's hungry/busy etc.
So we'll see what his labs show and what his weight does.
 
So just an update here.
The labs show the CRP is inching up from 3.7 in Oct to 6.7.
Hgb 11.8 stable
Total protein now low at 6.3, alb 3.4.
So it sounds to me like there is inflammation making it difficult to absorb protein and calories even though he doesn't have any D. We've emailed gi doctor asking about an MRE and my son is trying to increase calories while we wait to find out what's next.
 
Thanks for the update xmdmom. :)

I don't know if diarrhoea has been a symptom for your son in the past but both of my children have ileal Crohn's and neither had diarrhoea as a symptom of their disease but weight loss and nutritional deficiency was an issue. Certainly inflammation would be a playing role here.

An MRE would be a very useful next step.

Have they check for any vitamin or mineral deficiencies?

Dusty. xxx
 
Yes he presented with diarrhea and 10 pound weight loss. No blood.
They've only checked vit d and B12 and Fe. We'll ask for the Zinc, Mg next blood draw.
Not sure if the GI will want the MRE. He told us he follows clinical symptoms more than labs.
 
Our old doctor was also big on following clinical symptoms and minimizing tests. I was wondering if maybe he had a virus or something in college that could have put him into a flare? That happened to us when we first moved here it took a course of prednisone to settle things down again.
 
I am so skittish when it comes to both labs and clinical symptoms. One child had severe symptoms and normal labs and the other had mild symptoms and crazy labs. I don't think I have a comfort zone anymore. :lol:

I certainly do not believe labs when they are normal and what I see in front of me doesn't reflect that but I do when when it is the opposite, abnormal labs and mild symptoms or no symptoms, because in our case they did indeed reflect the carnage going on inside.

Dusty. xxx
 
I too dread this day... I am just trying to support by saying first you are an awesome mom. My kid like the Nutren it is the least yuck tasting out of the shakes. Or you could always go to health food store and stock up on some good powders to make shakes with. They have hemp protein and vegan powders packed with natural food sourced vitamins and minerals. They have the sweetest simple blender called the magic bullet. It carries easily compared to a standard blender even has a mug on top you mix with. Arm him with all he needs. He can mix with almond milk or rice milk.

Good luck! I hope he listens to his mother.
 
^^^^ yeah that!!
We had our Gi ok slim fast shakes if that was all they would drink.
The point being protein carbs vitamins in an easily digestible form
. You are doing your best
 
Here's an update and I'm looking for any thoughts you might have.

My son lost weight in the fall and gained it back during his 2 week visit at home during which I encouraged (=offered and pushed) him to eat lots of high calorie snacks, drinks and meals. His blood work at that time was a little worse with The late Dec labs showed the CRP is inching up from 3.7 in Oct to 6.7. Hgb 11.8 stableTotal protein now low at 6.3, alb 3.4.

My son had an MRE on Friday and the doctor told him that there was inflammation in the last 8 inches of the ileum with some narrowing and some proximal dilation. (There's no previous imaging to compare this one to.) His doctor said to stay the course and avoid nuts, steak, etc, and if the narrowing becomes a problem, he could get it dilated. The doctor said he didn't need drugs like remicade or imuran at this time.

Ok. This was the first time my son went to the gi doctor by himself and as expected, he didn't ask him questions or at least not the ones I would have asked. So, I'm thinking of sending some ?s to my son and asking him to ask via email. His doctor is excellent about responding to email. What should I ask? What would you ask?
 
Did the GI say if the narrowing was caused by inflammation or scar tissue? The acceptance of 'some inflammation' seems to vary amongst GIs :ywow: but some, including Stephen's new GI, seem more concerned about ongoing inflammation causing permanent damage - as there is inflammation, is he hoping the budesonide and LDN will take down the inflammation? I'm the last one to encourage taking stronger drugs :( but I would ask what is his reasoning for not believing more meds are necessary since inflammation and narrowing are present?

I would want to be sure that follow up testing was in the works so that any worsening can be caught as early as possible...

I would ask to arrange for follow up blood tests (one or two months) to check if his CRP is continuing to rise or if this increase was just a one time thing (hopefully, he can have the tests run at a clinic near his school). I think his hgb is a bit low but your levels are measured differently than ours??? Stephen's GI commented that his was a bit low and would like to see it higher; his is 131 and the stated min low should be 140 - this might equate to 118 for your son?? If this is the case, can/should he take iron supplements? I think these can be hard on the gut but kimmidwife once mentioned a liquid iron supplement that was easier to absorb (I've forgotten the name of it). I would also ask if other vitamin/minerals levels could be tested to be sure he is absorbing what he needs to alleviate the fatigue.

Would also ask when a follow up MRE should be done to see if the narrowing or proximal dilation is worsening or staying stable.

I think if there was regular testing, I would be more reassured that all was under control or that any worsening would be caught asap.
 
Last edited:
Hi Tess,

His doctor likes to follow clinically. It was I who instigated the testing with his pediatrician and then my son showed the results to his gi. Luckily, I can easily ask the clinic or my son's pediatrician to write a lab slip for bloods and I was thinking about having them checked in 2 or 3 months depending on how he is feeling. I await an actual hard copy of the MRE reading but according to my son, it is inflammation. Specifically asking if there is scar tissue is a good idea! I don't know if the gi thinks the meds will decrease the inflammation or just hold it in check; btw, the gi is not a believer in LDN. I assume (never a good idea) that he feels the symptoms are mild and the inflammation is confined so that's why not stronger meds, but I will ask, and ask specifically about what level of inflammation mild/moderate etc my son has. I also want to know about the low protein. My son is on iron, b12 and vit D but only takes one iron a day b/c of problems tolerating it.

Reading your post has helped me clarify my concerns.

Thank you!
 
XMdMom,
I have to agree with Tess that Hgb is a bit on the low side for a boy. I would question why he is low. Is he having bloody stools? How does this compare to other Hgbs in the past? The iron supplement that is easier on the stomach is called Floradix. Available online or in a health food store. Call them to ask for what dose they recommend. They will personalize it according to the H/H.
 
He has no signs of gi blood loss so anemia is most likely due to inflammation and microscopic blood loss. His ferritin was low at diagnosis but it might be good to recheck iron/ferritin soon. I will look into Floradix. Thanks!
 
I'm catching up and just wanted to say sounds like you are on it! Go Mom! :thumright:

I hope you get what you (and of course your son) need at the visit.

Hugs, J.
 
xmdmom said:
He has two GIs; one at home and one nearish to school at an IBD center. We really don't want imuran because of HSTCL and its other side effects.
Click to expand...

Hi mom, I've just read this thread and I'm curious if both his GI's feel the same about treatments and tests. I would never be judgmental about your or your son's desires to avoid certain meds but I can't imagine two GI's that would agree, unless they were picked for that reason.

I hope he gets back under control no matter what you all decide!
 
Dexky,

We didn't talk to the second GI! My son has 5 doctors! It's crazy. In our hometown, he has his pediatrician and "the second GI", as well as the internal med consultant who prescribed ldn. At college, he has his GI specialist at the IBD center (45 min away) and an internist who he saw once (so if he gets sick at college, there will be a doctor who will see him.) The GI in our town trained under the GI specialist at the IBD clinic, but seems to be more aggressive; he seems willing to follow him on whatever meds he's on and knows that he's part of this gaggle of doctors.

No more info on the MRE since my son has not accessed it on the patient portal.
 
EN will avoid further dilation of the proximal end I believe, it's a secondary event because of the stricture likely, which might be worth considering. Low residue diet somewhat help but they don't help a lot, fibers are responsible for most of the residue. Penguin mentioned it before, 028 is 500Kcal per portion, 3 times per day with high calorie drinks and you can pretty much live on it and basically you avoid all residue. You will increase diarrhea but as long as your fluid intake is high enough it is no big deal, it will prevent further dilation.

(people sometimes recommend fiber for strictures, strictures should be treated with no fiber at all, to increase flow through the intestine which will limit proximal dilation in front of the stricture, food should be as bioavailable as possible to decrease residue)
 
xmdmom said:
Does anyone actually drink elemental formulas or would that have to be via an ng?
Click to expand...

I drink it all the time, you can drink EN if you like just fine, all you should do is use a straw because EN tends to be high on sugar and a straw prevents contact with the teeth. It doesn't matter how you use EN, drink or tube, it's the same end result.

It would only matter for people where they try to bypass the stomach and go straight to the duodenum, but people with crohn's disease don't have stomach issues so it doesn't matter.
 
xmdmom said:
Dexky,

We didn't talk to the second GI! My son has 5 doctors! It's crazy. In our hometown, he has his pediatrician and "the second GI", as well as the internal med consultant who prescribed ldn. At college, he has his GI specialist at the IBD center (45 min away) and an internist who he saw once (so if he gets sick at college, there will be a doctor who will see him.) The GI in our town trained under the GI specialist at the IBD clinic, but seems to be more aggressive; he seems willing to follow him on whatever meds he's on and knows that he's part of this gaggle of doctors.

No more info on the MRE since my son has not accessed it on the patient portal.
Click to expand...

Geez, that's a handful! I just hope they all get on the same page…for his sake and your sanity:)
 
Quick question--

My son is applying for summer internships. Some applications ask "Do you have a documented disability?" Here the answer is easy: yes. Other applications ask "Are you disabled?" Not sure how he should answer that one.
Looking for your thoughts on this. Thanks!


I read that this agency is "particularly interested in increasing the participation in research of women, minorities* and persons with disabilities" so a yes answer shouldn't hurt.
 
The ones that say "Are you disabled" I would answer Yes, he has a documented disabilty, a chronic, severe immune disorder that goes through flares and remissions.

Obviously there are pros and cons to giving the extra info and you could just say he has a documented disability.

You could also just call them and ask for clarification so you know how to reply.

The reason I would put the extra info is because I would not consider him "disabled" in the traditional sense of that word. My interpretation of that question would be that it is intended to identify people with "permanent" disabilities that limit their ADL's (activity of daily living) such as people who rely on wheelchairs.
 
xmdmom said:
Quick question--

My son is applying for summer internships. Some applications ask "Do you have a documented disability?" Here the answer is easy: yes. Other applications ask "Are you disabled?" Not sure how he should answer that one.
Looking for your thoughts on this. Thanks!


I read that this agency is "particularly interested in increasing the participation in research of women, minorities* and persons with disabilities" so a yes answer shouldn't hurt.
Click to expand...

I think it would be good to answer yes so that if a problem comes up while he is working his internship, it won't be an issue for them. People can be much more supportive if they are aware. Shame on them if they don't accept him because of his IBD.
 
Need to check Ibd is covered under the Ada as a condition that limits major life functions so from the stance of we get credit for him being here - then yes.
I would also put Crohn's disease next to it in parenthesis so they understand what they are getting into.
I check all the female boxes
Sometimes it goes in your favor sometimes not . It depends but better to be honest.
 
Finally got MRE report. How can I tell if the stricturing is fibrotic vs inflammatory? Is this amount of dilation serious sounding? Does anyone know if inner wall hyperenhancement mean that the inflammation is not transmural?

Small Bowel: The distal 20 cm of terminal ileum are thick-walled and
there is inner wall hyperenhancement as well as mild upstream bowel
dilatation up to 3.8 cm in diameter, consistent with stricturing and
active inflammatory small bowel disease. No obstruction. There are no
other segments of dilated, thick-walled or hyper enhancing small bowel
loops.
Colon: Normal.
Strictures: 20 cm of terminal ileum, as above.
Fistulae/Sinus Tracts: None.
Abscesses: None.
 
Sorry I don't have answers to your questions. Hugs to you and your son. It might be a good question for the radiologist who read it. Sometimes they will answer your questions if you try to call directly to them...
 
xmdmom said:
Finally got MRE report. How can I tell if the stricturing is fibrotic vs inflammatory?
Click to expand...

I'm not absolutely certain of this but...

I've asked this a number of times, including to the GI, and have never received a definitive answer - I don't think you can tell 100% either way. I'm fairly sure 'enhancement' means inflammation, however, from what I've understood, you could have inflammation with underlying scarring in the same site.

Can't help with your other questions. Maybe also try posting in the 'Tests for IBD' subforum...
 

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