Parent, new to this - how do you cope?

[Sonwithcrohns2]

Hi,

I just can't stop crying. How do you come to terms with your child having this as a parent? And the scary meds?

My 16 year old was suspected of Crohns back in October after fluctuating bowel movements he'd had for about 6 weeks, along with nightime cramps in his legs (from lack of potassium it turns out). He finally told me and we took him to the GP for blood & stool tests. Came back with raised CRP and the same day he started with a high fever and slight stomach discomfort. Next day fever returned, we took him to A&E (ER). He was admitted and after a week of tests (sigmoidoscopy was declared 95% certain of Crohns. After subsequent testing (full colonoscopy & MRE =upper MRI with feeding tube) he has been given confirmed diagnosis.
He was initially put on Prednisone and that tapered off in late January. He also started Aziathoprine at Xmas and has been on it 9 weeks now. Stools have been back to normal and then recently (past 3 weeks) his CRP has started to creep up again, but then again he also came down with a cold which could be part responsible. He only just got the MRI of the upper bowel done 2 weeks ago and that is showing the Crohn's is still active (presumably from the initial flare)... so he is back on steroids again as of today and they upped his aziathoprine.

When he was first diagnosed, I naturally was very upset for him while he was in hospital, and spent many an hour at home releasing my tears where he couldn't see me... but I thought ater a couple of weeks I had come to terms with it.

Then we found out he would need the scary meds with the threats of side effects of cancer ... anxious times...

And now the flare seems to have returned, I have just been so worried about him. I just can't stop crying for the past 2 weeks. Is this a normal reaction? Has anyone else had this? I wake early in the middle of the night and just sob for about 3 hours every day.

I think it's a kind of grief relating to my son not having the health i life that I had hoped for him.

I hide it from him of course, as I don't want him to know it's making me upset and in himself I think he is coming to terms with it okay - although it's hard to tell whether he's just being a moody teenager or depressed about the whole thing. So far his symptoms haven't stopped him doing anything but I don't think he is aware of the unpredictability of this disease.

He is doing important exams right now in the UK and what he is worried about is the impact of missing school on those. He wants to do medicine and resits are not an option.

16 is such a difficult age. The doctors treat them as adults. They ignore the parents in the ward - they told my son while he was alone that he probably had Crohn's instead of waiting for us to be with him. But of course a 16 yr old doesn't have the experience/ knowledge to ask the right questions of the doctors either. Add to that that a 16 yr old doesn't understandably want to discuss his bowel movements with his mother (sigh).

I am sure you have all heard this story before... I would just like some advice as to how to get my head in a good place with this and be more positive for him.

In 18 months time my son will be 18 and I will get even less information on how he is doing. I need to do my best in this next 18 months to help him take responsibility for this and learn to manage it with a positive outlook.

 

[Sonwithcrohns2]

It seems his Crohn's is mostly in the ileum? area - the bit where the small bowel joins the large, I mean. Occasional ulcers in other areas of his large bowel but not too bad. He's now on a different steroid which targets that area of the bowel along with the scary aziathoprine.

I so hope they bring out a safer treatment for everyone soon that works until they find a cure.

 

[DustyKat]

Hi Mum and :welcome:

First up...:hug::hug::hug:

Time heals all wounds, or so they say, and to some degree that is true hun. Well that and remission. What you are feeling and doing is so very normal and natural hun, he is your child, your son, your baby and you will always feel his pain and disappointment so very acutely. You are right about the grief and it is something you will move in, out and through as the years go by, please have a look at this thread...

http://www.crohnsforum.com/showthread.php?t=22520

...I have two children with Crohn's and I have felt exactly as you do. Both of my children are in remission and as time moves on and they are well the laughter does return and Crohn's doesn't infiltrate your every waking thought. It is still the last thing I think of at night and the first thought in the morning but I do go for very long periods now without shedding a tear, but occasionally the black dog still nips at my heels and thoughts of how fleeting the good times may actually be come flooding to the fore and I have my secret cry. You will get there hun, believe me, you will.

I don't know about your exam system there but please do look into it, I would be very surprised if there isn't something in place to accommodate students with a disability and chronic disease falls into this category.

My daughter moved away to university two years ago and I had the very same fears you do. I was concerned about her taking care and responsibility for her health particularly as she "went off the rails" during her last year at school. Well she stepped up to the plate and more! My son has just started university this week but he is still living at home. It is a fine line between saying nothing and saying too much but you will develop the ability to assess how he is going without asking, :lol:, and I have found that both of my children tell me if something is happening when it counts.

Have you seen the Enteral Nutrition forum? It may be something worth looking into, particularly since you are in the UK and it is well accepted there as a first line treatment.
I see you have added another post that answers the question I was about to ask. Since your son's disease is mainly in his ileum has he had bloods done that test for his levels of B12, Iron Stores, Folate and Vitamin D? If not then I would suggest you do so.

Also pop by and have a look at the parent's forum...

http://www.crohnsforum.com/forumdisplay.php?f=49

Good luck and welcome aboard!

Dusty. xxx

 

[DustyKat]

Addit:

Both of my children are on Azathioprine and they have had no side effects. The main thing is to ensure he has his bloods regularly monitored. Please also have a read of this article...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

Dusty. :heart:

 

[Sonwithcrohns2]

Thank you so much for replying, your post was really helpful and thank you so so much for those links. That last link is incredibly reassuring re the meds, I didn't know the statistics were that small for the cancers. I am very grateful. Also the fact that aziathoprine can take up to 4 months to kick in? I didn't know that either.
I actually asked about enteral nutrition this week and was told it isn't used in children over 16 as a general rule. Having said that we only saw a junior doctor, so perhaps at the next visit we can discuss it again. I cannot see my son going for the tube though - why can't they just make a tastier version that doesn't make people feel sick?

 

[tinkerbella]

Hi there,

Firstly big :hug:

While I'm not a parent of a child with Crohn's, I do have two young boys and my heart goes out to you :hug:

You mentioned an elemental diet and I think that's an excellent idea and you don't necessarily need an NG tube for it. I have had extensive treatment with this as a teenager and now, at the age of 29! I am on it again, no NG tube this time though. I had to really push my doctor to let me have it though! I take Ensure plus supplemental cartons which you can drink with a straw. They're not the best tasting drink ever but if they do the job, who cares. The idea is to allow the bowel to rest and give it a chance to start healing. I think asking to see a dietician would be a very good idea and you can get advice about types of foods that work well with a supplemented diet (if you've not already seen one), and maybe coming up with a plan that allows him to manage his symptoms and eat more on better days, have ensure on worse days, for example.

I really hope this is helpful, hang in there!

Angela x

 

[Sonwithcrohns2]

Thanks so much for the hugs both of you.

When he was admitted with the initial flare that had been going on 6-10 weeks, they did test his iron stores I believe as well as his vit B12, but I will ask about the others - thanks! he has been taking vit D3 with the first lot of steroids and again with this lot too.

I feel so lost about how to handle all this. He is already on aziathoprine. The doctors at Oxford don't use elemental diet for children over 16 and so I would have to push for it. There is a dietician there but she doesn't believe in it either. Yet I have a book by a gastro from Addenbrooke's in Cambridge who swears by it. It's so hard to know what to do with all the conflicting advice even from the top doctors.
The other problem is you don't know who you are going to get to see at a consultation here. The other day we had a fairly junior registrar who had to go and ask the consultant about what medication adjustments to make for my son. She was gone 15 minutes. I had thought that we might be part of the discussion & although we were asked were we happy with that, there was no opportunity to ask about alternatives properly...she just gave us the stock response that hey didn't tend to use diet in children of this age. The whole thing is just one big minefield and I feel like I am groping about in the dark for which direction to take. Add to that a 16 yr old who doesn't want to think about his Crohns and will basically just do what the doctors say cos they are the doctors and as his mother, I know nothing - it makes it really hard to explore other avenues that I would like to.

Our family really desperately need to take a holiday after all this stress and other stress we have had recently ( my mother has also been seriously ill & my husband has finally found work after being laid off for 2 years) but I am frightened to do so - it all seems so uncertain. I would love to take them all to see NY in May but am nervous to leave the country. I know they have good docs there and good holiday insurance would cover the costs of any medical treatment but I am scared we'll end up stranded there for weeks or something. Do people with Crohn's travel abroad much?

 

[Sonwithcrohns2]

The doctors/ dietician here told my son there is no special diet for Crohn's & that he can eat anything. Now I am learning by reading that although there is no set diet, so many foods can be trigger foods. We have been given no guidance how to determine what is a trigger.
The book I have by the guy from Cambridge talks about the Lofflex diet and I did ask the dietician who said there was no proof but my son can do it if he wants to try & identify triggers. But unless he buys in to keeping a food diary, we are not going to get anywhere with that anyway. He really doesn't like discussing his symptoms with me.

The other thing is identifying when his Crohn's might have reached remission. His main symptom tends to be looseness or diarrheoa at it's worst. Even when admitted to hospital, he had been able to go all day without using the school toilets (which he hates) and then need to go several times during the evening. So when they put him on the first steroids this all went and he was back to normal stools. This has remained so but then he caught a cold 3 weeks ago and his CRP went up slightly (it had been returning from 87 in hospital down to 9.5 and still dropping when on the steroids) to 20. We were told it was probably the cold that caused the slight rise... but then 2 weeks later he had another blood test - the cold is still present and the CRP was up to 29... then he had a day of bad looseness and then a normal day then 4 days of part normal/ part loose stools... so we weren't sure if it was a flare or not or a virus. Hence made an appointment with the specialist. Meanwhile I put him on low fibre, low fat foods and the looseness cleared up. So anyway we got to the appointment and the junior doc examined him and told us that she felt he was under control with his meds as he'd had no vomiting or pain... well he never has had those things... then I asked her about his upper MRI he had done 2 weeks previous to see if that part of his bowel was affected and she saw that the iliem area was still inflamed... so if it hadn't been for the MRI, we would have been sent home no change...

So how do we tell if he is in a flare, active crohn's (is that different?) or in remission as it seems all this time the initial flare was still active, even with no symptoms.

 

[Sonwithcrohns2]

Finding everything so confusing! How do you plan anything?

 

[Tesscorm]

Hi,

My son was diagnosed last May when he was 16 as well. I can easily remember the heartbreak, the worry, the questions, concerns, confusion, etc., etc. ! It is certainly overwhelming! So, just try to take a breath... I'll try to share some of my experience thus far...

- Emotionally, I can't explain it any better than Dusty did above. The emotions will calm down, I'm don't expect my worry will ever disappear nor my disappointment that he will always have this burden BUT, as I've learned more and more, my worry has decreased somewhat and also the disappointment as I've seen him continue on with his life almost as if he doesn't have Crohns. Just give yourself a bit a time to learn and adjust. Sometimes, I think our children find the adjustment and acceptance easier than we do!

- My son also did Enteral nutrition treatment and continues this as his sole treatment. It is a great alternative, has a comparable success rate as steroids at inducing remission but not as high as other meds to maintain remission but, while it works, it has nutritional benefits and no side effects. Having said that, your son is already on a course of treatment so I'm not sure if you should switch that now. I know little about Aziathoprine so I'm not sure how long your son may need to allow the medication to give him its full benefit. Please have a look through the various treatment subforums here, there is tons of info and feel free to ask questions of those who have experience with the medication. The members here are wonderful and will share their experiences.

- As far as diet... to add to your confusion and frustration,:ymad: there doesn't seem to be any one diet that works. My son was restricted only from seeds, popcorn and nuts (nutella, peanutbutter are fine, just not pieces of nuts) because these can bulk up and contribute to an obstruction. Also, veggie/fruit skins are to be avoided as they are hard to digest. These are his only restrictions and, so far, he has eaten all other foods, including 'junk' foods and has not had a problem. I would try to keep a journal and 'test' questionable foods... ie. high fibre, dairy, spicy, etc. I would let my son try a bit and we'd see how things went for a day. If there was no reaction, we'd add a bit more... so far, so good. Again, have a look at the diet subforum for ideas.

- As for sharing info with a 16 year old boy! :hallo3: Boy, I know how tough that is!!! It must be so maddening and upsetting for a teenage boy to be put in a situation where he has to discuss his bowel movements and bum issues with his mom! I reached the point where I was afraid to ask a question and afraid to NOT as the question!! I finally made a deal with him at New Years - I would stop asking 'is everything okay' (unless I had a real legitimate reason to ask) and he promised he would let me know if there were any new GI symptoms, no matter how small. This seems to working... it has alleviated my worry as I believe he will tell me and I'm sure I'm less of an annoyance to him now!:heart:

- As far as holidays, etc. Give everything a chance to settle a bit - how he's feeling, is the med working, is he having trouble with foods, allow your family to become a bit more familiar with Crohns, etc. I think, at that time, you’ll feel comfortable moving on to your ‘regular’ life, including holidays. We went to Disneyworld 3 months after diagnosis and all went fine..

(Boy, I certainly remember having all these questions!!!:confused2

Doing what you're doing... reading, learning, asking... will help you better understand and, as Dusty said, time will help.

Good luck :ghug:

 

[tinkerbella]

I don't think there's anything wrong with supplementing medical treatment with diet. The lofflex you mentioned I think is an excellent starting point. At the end of the day there are certain foods that will trigger a response from the disease and while it's not the same foods for everyone, it's worth finding out what those are, and keeping a food diary is a helpful way to do this, so you know to avoid them in the future! He doesn't have to have a restricted diet forever, but it's useful to know in times of flare ups that particular foods will not help.

I remember not going away often when I was young because of the disease but my mum didn't have leave left from work because of having to take time off to look after me. Like Tess said above it doesn't mean you can't go away, I'd suggested asking him if he thinks he's up to it and whether he thinks he can manage his symptoms while away for a week or however long. A change of scene does the world of good! For everyone.

Even as an adult and having two small boys now, during a flare I find it hard to plan things because you just don't know how ill you're going to be or how long for! It's very frustrating! If you'll pardon the expression I go into 'bugger it' mode whereby I think if I'm ill I'll get on with it because we are going to get out and enjoy ourselves xx

 

[tinkerbella]

And I meant to say you can ask to see specific doctors. When you get weighed by the nurse/healthcare assistant ask if your consultant is in clinic today, and that you be seen by him/her. Might mean a longer wait but is worth it for the continuity of care.

 

[Clare82]

I was in the same boat as your son, i'd just started my gcse year and missed 3 months of school because i was so ill and had to have some of my bowel taken out and recovering from the surgery. I had to work so hard to catch up on the work i missed and i still got the grades i needed to go to college.
I have got to take my 11 year old daughter to Alder Hey hospital in 3 weeks time for a colonoscopy as she has signs of the illness too. I, like you, just sit and start to cry, not just because of how ill she is or how skinny, but i feel a lot of guilt. When i was diagnosed 15 years ago, the doctors told me they didn't think it was hereditary, even though my uncle was diagnosed a few months before me, they thought stress caused it for both of us. But now i read that it IS hereditary. When we first went to the hospital with her and they said it could be crohns, she started crying as we walked back to the car, mainly because she's fed up of not feeling well and being poked and prodded, but she also blamed me which was really hard to hear, and i just wanted to cry but i won't cry in front of her. I explained to her that i didn't know it could be passed on and she was fine afterwards. I think she's afraid. But she accepts what i tell her about the condition and today explained about the colonoscopy and she's not getting worked up about it. It helps that i've had several tests since being diagnosed so i can talk her through what will happen x

 

[Sonwithcrohns2]

Thank you so much for sharing your stories. It really helps not to feel so alone with this. Just knowing others have been there and are still going through this.

My son was on acne meds just as this broke out (doxycycline) and I did find a paper potentially linking the two.

Tess - your post really lifted me - thank you! I'm trying to at least get broccoli heads down him along with carrots as I read there is a trial somewhere looking at broccoli and bananas as being good for crohn's. I'm glad your son can tolerate nutella... I am dreading this Easter for him with no chocolate around. I tried him on peanut butter yesterday and I think all was fine afterwards.

My son is desperate to go on holiday too. His symptoms to date have never been so bad that he couldn't do things - even when he was admitted to hospital, he was still managing to delay bathroom visits all day at school until he got home. I think my fear is what if something suddenly happens that needs urgent attention - but then maybe we would get pain or something as a warning first? He has never yet had any pain from the crohns. He has exams in May and then we have a week of school holiday early June - I would love to take him to NY that week. It's just the risk of a medical emergency, but at least the US would be a safe place to visit I guess. I need to try and think of it in the way that anyone is at risk of appendicitis. I guess we could book and then cancel on the insurance if he is too sick leading up to it?

Tinkerbella - thanks for the diet tips - I guess maybe we should just "go for it!"

Clare - I am so sorry your daughter may have this too. I hope she doesn't. At least you are a wonderful role model for her.

 

[OnMyOwn]

Finding everything so confusing! How do you plan anything?

Hi there! I'm not a mom, but I have had my own battle with Crohn's over the past year and I completely identify with your statement above. I've had a lot of change in my life over the past year and the Crohn's has interrupted so many of my plans. What I'm realizing is that having Crohn's means that sometimes it is impossible to plan things in the way I used to and, since stress is such a trigger for this disease, it might just be best to learn to be okay with the fact that a plan is not always possible. I'm nowhere near actually accepting this... but trying to learn to live for today, take care of my body the best I can and do what I can to prepare for (but not stress over) the future.

Just remember that the purpose of a holiday or other vacation planning is to reduce stress, not increase it.

Best wishes to your son!

 

[Tesscorm]

My son's symptoms seem similar... even at his worst, he did not feel urgency to rush to bathrooms.

My son has also had ups and downs... His CRP was 190 when diagnosed, 20 when leaving the hospital (May), 12 in October, 31 in December and 19 in January! The increase in December may have been partly due to an injury and a cold?? But, over the months, I've found that he does sometimes have 'off' days... pain hasn't been an issue but during his 'off' days, his BMs will be looser, sometimes close to diarrhea, he says he can't explain it but can feel that his gut just isn't 'normal', sometimes (this seems to be always!) he seems pale, less appetite, a bit of nausea... his ultrasound and MRE still showed some inflammation in Oct/Nov. So, I don't think there is a definitive answer as to whether his 'off' days were a minor 'flare' or if he is 'sort of' in remission but once in a while something will set off some 'instability'. The first couple of times this happened, I was in a panic not knowing what was coming next! But, now, I'm a bit calmer and wait and see...

In time, I think you'll start to understand what is 'normal' for your son... when I've worried during his 'off' days, my son has said 'Mom, I have crohns. Its going to be normal for me to have some weird things sometimes.' And, I think he's right...

Once you go through some ups/downs, you'll be more relaxed about scheduling events, vacations, etc. When we went to Disney, the day we arrived, my son felt 'off' and had a bit of mucus w/speck of blood! I wasn't in a panic but certainly worried! But, I made sure he ate small meals, low fibre for lunch and dinner, lots of water and made it a 'relaxing' evening. All was fine by the next day. I think it was due to travel and airport food.

On another occasion, at an out-of-town hockey, on the way to a game, he tells me he's been having some pains and hasn't gone to the bathroom in a 2 or 3 days! Ugghh! That time I panicked, thinking obstruction, etc.! But, spoke with an experienced mom here, ran out to buy prune juice and yoghurts. Made him have both that evening plus coffee (which he never drinks! LOL) - if I remember correctly, he went 3 times by the next day! Ooops! Too much of a good thing? Of course, being a mom and 'needing' to worry, then I was worried that he'd have an 'urgency' problem during the game! :ybatty:

But, I guess my point is that I've accepted that I may not always know what's coming but that it won't always be the worst thing that I'm thinking!

If you and your family want to go away, maybe just make sure you can cancel should you need to or plan somewhere closer to home or somewhere you can have more control over food (i.e. accommodations with kitchen)