Just to update you all, Callum's poo been gradually getting worse all week, so I phoned the hospital this morning, left message for the Consultant, he finally called me back at 5pm. Result is that he thinks he needs to see Callum on Monday at 11.30am and take blood, see what the numbers are doing. Told him about the lightheadedness, Callum's dark eyes, stomach pain, etc. Don't know what they can do, he is supposed to come off the steroids altogether in just over 2 weeks.
Hi Mary, thanks for the welcome ! We saw the consultant yesterday and the dietician and instead of steroids we are going to try the modulen, whether we can get my son to drink it is another thing lol. Fingers x he will take it alright, its going to be hard though, no food for 6 weeks !
Callum did the Modulen for 6 weeks, but he had a nasal tube fitted and we used a pump, he had to have 2 litres a day and its a lot to drink, so Callum had 1 litre by night while he slept, and 2 x half litre in the day. He even went back to school with his tube in and we worked the feeds around it. Our dietician let him drink flavoured/bottled water, and he was allowed to suck boiled sweets. Has your dietician ruled out everything?
If your Son does decide to drink it, take advantage of the fact that you can put Crusha milkshake syrup in it, Callum still drinks 500mls a day with the strawberry, and because he doesn't like the smell, I put his in a pop-top bottle.
Feel free to ask me any questions. It took me a few days to get my head around the fact that I was feeding my 12 year old a milk formula, and I felt that I was starving him, but once we got into our routine and he started to feel better, it was ok.
Hi Lynn its nice to hear someone else's son has taken modulen, we feel rather alone with all this so thanks for sharing your story with us.
Jordan has to drink 400 ml x 4 drinks or he can do 320 ml x 5 drinks, we have got the flavourings to put in there. He is allowed flavoured water and boiled sweets.
When they say boiled sweets what is safe to have i.e. foxs glacier mints things like that ??
Yes, the Fox's sweets are ok, but Callum preferred the fruit flavours as opposed to the mints all the time, he also had pear drops, basically its anything that is sugar and will just dissolve without being anything 'lumpy' to swallow. (This was more important to Callum as he had the tube down and I used to have to check it every day to make sure it wasn't blocked.) Callum was also allowed to have chewing gum but every dietician will work under different rules, some won't allow anything but the Modulen.
Callum found the first 2 weeks the worst, obviously everywhere you look food is advertised, his brother and I used to eat our meals in the kitchen while he watched tv in the lounge so he didn't get the smell of our tea, etc.
I hope Jordan gets on with it ok. Did they give you the tube option if he can't drink enough?
Ben had pretty much the same experience as Callum, Lynn's son. He had the Nasogastric tube put in and most of the feed through that overnight, just because of the volume and the length of time he needed the feed for. He liked the chocolate flavouring best. The 6 weeks passed fairly quickly in the end. At first it wasn't so bad because he felt so ill that he didn't have much appetite, so when we were eating at meal times, he wasn't that bothered. As time went on and he began to feel so much better, he did get fed up at times but handled it very maturely. We were allowed the same things as you, clear fluids and boiled sweets. Ben liked to have ice lollies made from clear fluids. He was allowed ribena, so we used to give him the frozen Ribena ice pops to eat. At least it felt as though he was having something to eat while wewere having our tea etc. I struggled at first getting hold of the Foxes Fruit sweets, I just couldn't seem to find them anywhere. My brother rang Foxes to ask for local stockists and they sent us lots of packets through the post that really made Ben's day.
Hope it goes ok for you all. If younedd to ask anything or just want support when you think you are going mad, come on here.
Hi Mary and Lynne thanks for sharing everything, i am so down today i really am, i cant get jordan to drink the modulen at all, it looks like he is going to have to have a tube put in, can anyone tell me what this involves please ? is it done at hospital, will he have to stay in hospital for that ?? can he still play/do sport with it in ?? thanks sam x
I totally know how you feel, I had high hopes that Callum could drink the Modulen normally, and was so disappointed when he couldn't, its a lot for a child to take on board. To be honest, once you get your head around the whole 'tube' thing, its the easiest option in the long term. Or I thought so anyway. You can get the Modulen straight in, especially at night. Callum used to sit on the sofa with his pump and say 'Feed Me!!' - it was so funny!
Callum went into the treatment room at the hospital and they showed him the tube, basically it goes up his nose and then through a hole at the back, and down into his throat. They can give them some Entonox (spelling?) to calm them down, but they MUST keep on swallowing once the tube hits the back of their throat. Once the nurse thought it was down far enough, they sent Callum for a chest x-ray to check it was down into his stomach. The tube is taped to their cheek and you get a valve on the end that you connect the feeding tubes/pump to. Then he was kept in hospital for a few days, more so for me to get used to making the feed and the nurses showing me how to set up the pump. Once they were happy I was ok with it all, they sent us home - with MASSES OF EQUIPMENT! You have the pump, plus tins of Modulen to get you going, plus we had bottles in two sizes, and syringes - you have to 'draw back' on the tube before every feed to make sure you get stomach acid - you test this on a PH strip - and also to make sure the tube is still in the right place. Please don't panic, its a bit scary to start with, but believe me, once you've done it 2 or 3 times a day for 6 weeks, it becomes second nature. After every feed, you have to flush the tube with some sterile water too. Thats one of the reasons they can't swallow anything lumpy, you risk drawing it up from their stomach when you do the test and it would block the tube. Sometimes they will only send you home with a 'starter kit' so to speak, and then a company will deliver more boxes a few days later - please put aside a corner of your lounge or wherever to store this stuff - every feed goes into a new sterile bottle, new tubing, etc.
The valve has a cover on the end to stop anything going in or coming out when it shouldn't, so I should imagine certain activities will be ok - if the tube is quite long like Callum's was, we used to tape the end to his shirt or jumper. You just have to be careful putting T-shirts and such over their heads when they get dressed, as obviously it is inside their nose and can easily be pulled.
I know this all sounds complicated, and for a few days until you get used to it, it may well be, but please believe me, you can do it. If you need to, contact me privately and we can speak on the phone if it helps.
Sorry to hear you're feeling so down. This really is a tough time isn't it. We had pretty much the same experienceas Lynn and callum. Ben had his tube put in whilst he was in theatrehaving a scope, so it was not too bad. We stayed in for a couple of days to get used to the pump and to get used to the sensation of being fed through it. One thing that really helped was that the staff asked another patient from clinic to come and have a chat with Ben about getting used to the tube. He really responded well to that and listened when they said it would soon feel as though it wasn't there. The first day back at home, he pulled the tube out accidentally, we had a number for a local community team of nurses who came out and re-passed it at home. It took a week or so for him to get used to it being there and after that, most of the time it just didn't bother him. He had the pump overnight and the had 2 - 3 drinks of the milk during the day to stop him feeling hungry and to give him something to have at meal times. He played most of his usual games, we just wound the tube up and tucked it into his t shirt. He went to school and dealt with that really well.
I know this is a lot to take in but honestly, it does get easier and it is straightforward when you've got used to it. Ben has said several times when we have had problems since that he wouldn't mind going back on the feed if necessary. The thing is, once they start to feel better, their mood improves and they're not so irritable, then that makes things easier to deal with.
Hi Lynn, I read your post and think.... Big sigh, I don't know if it is a help to say know how you feel because it trully is so awful. But hopefully good to know that you are not alone and we can all send out BH's to others who understand. So here's a BH. Lisa
Hi 3little darlings, Welcome.... Quite a few of us mums on here at the mo. My son Joe was diagnosed almost a year ago when he was 8. He turned 9 in May. he hates crohns, tablets, Doctors, medication, hospitals blood tests, endoscopies and anything assosciated with the 'C' word! He loves his DS and X factor and big hugs! I hope you begin to have some answers and feel supported by this site on your long road in the battle of the crohns. I met some people this year who were really positive about their condition..... I have to think that hopefully one day we will be there. Best wishes Lisa ans Joe
Hi Lynne, Mary and Lisa, thanks for your messages, means alot to know we are not alone. Jordan has started to drink a small quantity over yesterday and today, he needs to up that though so fingers x he can do it, i will keep you posted. Hugs Sam xx
Hello Everyone, took Callum to hospital today, more bloods taken, will get phone call with results tomorrow.
Consultant now talking about stronger steroids AND immunosupressants! Oh, and possibly a trip from Cornwall to Bristol for another colonoscopy, because the doctor in Bristol who oversees the work down here might want one, considering that the steroids he is on now aren't really working.
More stress, more side effects, what did we do to deserve this?
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