Modulen- Confused and NEED help!!

[MissyMoo]

After months of complaining of severe stomach pains and dramatic weight loss the doctors finally done something about it and booked me in for a colonoscopy and endoscopy. I had those both done a week today and have not had any results yet. The surgeon came to see me after the procedures and said that were my small and large intestine join, is very inflamed and they were unable to get into my TI (terminal ileum) because it was too inflamed. I have been given anti-inflammatory's (pentasa/mesalazine) to reduce the swelling and Tramadol hydrochloride to deal with the pain. My dietitian has put me on the modulen diet for eight weeks to build me back up and to give my bowels a rest I started that on Saturday, so I have been on it for 5 days.

I am finding the modulen diet very very hard and have been in tears because not being allowed to have food has got to me so much. I have been finding very hard to drink the shakes every few hours and so my mum suggested a nasal gastric tube thing, but my reaction to that was just no way. I didn't like the thought of everyone looking at me at school. When I was having a breakdown in tears the other day I just shouted out 'give me that tube now I can't do it any more!' I feel so weak that I can't even last a week! I then suggested steroids to my mum and she's not to keen on the idea because of the side affects. I spoke to my stepdad as well and he thinks I'm being selfish because I'm just taking the easy way out, so then I spoke to my dad who said he didn't like the idea of them either because of the side affects in the long run and he thought steroids were a cop out as well. I looked the side affects up and I'm willing to live with them, as long as I can have food!! My mum said she'll let me go on them because she said what ever makes you happy...

I'M SO CONFUSED?? What do I do? none of my family like the idea of them? Can anyone who's been in steroids tell me about the side affects they had?

:depressed:

 

[Tesscorm]

Hi MissyMoo,

So sorry you are in this predicament! I can't offer you any info re the steroids but my son did enteral nutrition for 6 weeks with an NG tube.

No question it was tough to go without food! But, as far as the tube, he removed the tube each morning and reinserted it before bed. During the day, he was allowed clear fluids - broth, freezies/popsicles, jello, pop, etc.

I've posted a number of posts on the Enteral Nutrition subforum about some of the issues, annoyances he had. But, except for the 'food', he hasn't had much of a problem with the tube, etc. (He still uses the ng tube and is on a lower dose of the formula as a maintenance treatment.) If you have any questions re the EN, I'm happy to try to answer those...

I'm sure other members will come along with experience with the steroids to help you.

Good luck!

 

[MissyMoo]

Thank you Tesscorm for replying!

Did your son find it hard to cope with the ng tube? and could he feel it when it was inside hm?

 

[Tesscorm]

He's had very little difficulty with the insert and removal of the tube. He did have an annoying sensation of having something in his throat the first few days, however, it was never painful, just annoying/bothersome and he became used to the sensation in just a few days. But, I know there are other members here who have said that the tube caused some nasal/throat irritation. Keep in mind, however, that he only had the tube in for approx 10 hours per day and the 10 hours were overnight so he was sleeping for most of it.

For him, the most difficult part was not being able to eat. But, he took broth to school to have at lunch and the school kept freezies in the freezer for him as well. He wasn't hungry in the morning as he'd just had the formula all night but he was hungry by evening... again, he would have broth Not much but, at least, it was something 'warm' and close to 'food'.

I don't know your age but my son is 17.

 

[Tesscorm]

MissyMoo,

I also wanted to say that I feel for you It's easy for us, as parents to ask you and my son to do the EN because we worry about the side effects from the steroids but you are the ones going without food. I do agree with your parents and was relieved that my son chose the EN route and am full of admiration for him, you and everyone else who has undertaken this treatment. You say you've been on EN for 5 days, perhaps, it will get a bit easier for you Ask about broth, etc. - being able to have some 'food' may help a bit.

Good luck whichever treatment you decide on! And, don't hesitate to ask any other questions you may have!

 

[MissyMoo]

I have been thinking about the ng tube and that doesn't seem so bad. Iv'e decided I'm probably going to stick with taking modulen drinks through out the day until I've done at least a week and if I'm still fining it hard I will try steroids but if the side effects of them become too much for me i will stop taking them and speak to my doctors about a NG tube. By the way I'm 14 nearly 15 years old.

 

[happy]

MissyMoo,
Wow good for you! I took another liquid drink called VivonexPlus intermittently for about four months, so I know how hard it is to just take the drinks (which don't taste very good) and to not have any food.

I don't know what it is like to be a teenager and to cope with all of this--I probably would have been a moody complainer and my parents would have begged the doctors to put me on steroids, instead!

I know teenagers who have had chemotherapy and when they were going through it they would make a symbol on a strip of paper every day during their treatment. They looped each strip through the next as they went through their journey so it created one long chain of loops. In this way they recommitted to the process every day and they could see how far they had come already, so they were strengthened to carry-on. They also had little celebrations planned along the way, a new nail polish after a week, a special outing after a month etc. and the celebrations got bigger until the biggest at the end. Perhaps something like this will help to keep you going?

Good luck with your EN journey. May it go smoothly. :goodluck:

 

[MissyMoo]

Haven't been on here in a while! So much has happened over the past few days! Basically I decided to go onto steroids because I was really stuggling with the modulen so on Sunday I got my mum to go and pick up the steroids from the pharmacy and I started them that morning on a dose of 40mg of prednisolone. I ate throughout the day like I was supposed to and my stomach was fine.... BUT that evening I was in SO much pain it was unbelievable! I tried them for the second day yesterday and ate food but not as much as the day before and last night I was in agony! My mum phoned the dietian up this morning to ask if I can go back to the modulen because I was having very little pain with the modulen compared to the steroids. The dietian said yes and so I went back to having the amount I had finished on. But I am finding it hard again to drink the full amount so me and my mum have discussed having a feeding tube. I am willing to have it but I am worried about people looking at me at school and asking questions and talking about me behind my back, also I would like to know whether I would be put to sleep when they put the tube inside me? I have to phone the dietician back in a few hours to tell them if I definatly want the tube and if I do then I will go in tomorrow morning at 10am to have it done.

Sorry I haven't been on in a while!

 

[Tesscorm]

Hi MissyMoo,

I'm sorry you've been having a hard time!

Re the tube, my son inserts it and removes it each day. (So, no, you do not have to be asleep to insert it! ) It took him a few days to get really comfortable doing it but, after a week (or less), he was doing it with no problem (removing is easy...). At the beginning, I would hold a bottle of water and he would drink the water through a straw and 'swallow' the tube. Once he was comfortable with it, it would take less than 10 seconds. Now he does it on his own, I don't think he even uses water to insert it now. He said that, at the beginning, it felt like when you get water in your nose. Also, you need to 'get over' the gag reflex, when my son was learning, I told him to try to remember how tiny the tube really was compared to the size of bites of food he would normally swallow. The tube is very small, maybe the size of spaghetti...

There's another mom on here, IMABOVEITALL, who's daughter is 14 and she has been inserting and removing the NG tube daily for 3 years.

Will you be having the formula only overnight? My son's was only overnight and during the day he took broth to 'eat' at lunch with friends and the school kept freezies/popsicles for him.

Good luck... let me know if you have any other questions...

 

[MissyMoo]

Hi tesscorm,
The feeding tube would be in the whole time and wouldnt be taken out until the diet is over. I would just have to connect the tube to a seringe and just slowly feed it into me throughout the day, it wouldnt be at night.

 

[Tesscorm]

Well then just keep the overnight feeding as an alternative. If you find the tube annoying or distracting to remember to do the feeding throughout the day, perhaps speak to your doctor about the overnight feeding. It wasn't easy to go throughout the day without food (doing it through the day probably alleviates much of the physical hunger) but, my son had nothing to concern himself with during the day (no tube or formula). Just another option for you

When they're inserting the tube, I think the hardest part will be your reflex to gag... just try to visualize how small it really is... and I'm sure they will give you water and you just keeping swallowing as the tube goes in. My son said it didn't hurt at all, just felt weird... :ghug:

Good luck!!!! Let us know how you get on with it!

 

[vickie_x]

Hi MissyMoo
When I was on modulen I couldn't stand drinking it at all so had an NG tube inserted almost immediately. I was awake and sat up with a glass of water and a straw. The nurse started to insert it and told me to just keep drinking and it seemed to slide down easily. When it was in place it took a little getting used to but the weirdest sensation for me was it going up my nose.

I was fed the modulen by syringe (I think it's called bolus feeding but not sure) and although it took time, I was in hospital already so I didn't need to fit it into any kind of routine. But the time it took me to complete the feed each time (I split it into 6 'meals') was roughly the same as if I was eating food anyway so it shouldn't impact on day-to-day routine too much I'd hope.

Hope you get some relief soon and good luck with it x

 

[MissyMoo]

Right, last wednesday I had the NG tube put in and I absoloutley hated it! it hurt so much it took me about two days to get used to it and now its fine although sometimes when I swallow it hurts and my nose has a strange feeling in it sometimes but I'm getting the full amount in that I need and its alot easier than drinking it! I am on the diet until the 7th april which just seems ages away! Also I've already decided foods that I want once this diet is finished!

Also tomorrow I have an appointment with one of the doctors at the hospital and they will have the full results of the biopsies from the colonoscopy.