Very Sick And A Lot Of Pain

Hey everyone,

I'm at my wits end. I have "painsomnia" every single night. It's usually in the form of very painful gas, and my body just seems to keep producing it. It wakes me up, prevents me from sleeping and never seems to cease! I eat fairly well (a lot of candy, if I'm being honest) and it's happening even if I DON'T eat. Like, nothing. I feel tremendously better if I don't eat at all, but that's not an option. I've been known to get this even from a bland piece of chicken!

I'm currently on Methylprednisone (32mg), Prilosec (20mg x2), and Gapapentin (100mg x3). Attempting to get on Remicade and Methotrexate ASAP.

My pain levels are so high at night it's complete misery. I'm sleep deprived and definitely hurting. I also have regular constipation, that usually turns into diarrhea and back to constipation. Taking Milk of Magnesia for that. They did an upper GI series and I have no strictures or blockages or anything. Definitely have Crohn's, diagnosed through Colonoscopy. Please help, I'm 17 and in so much pain I often can't get out of bed. Typing even this with tears!

I wish I could say welcome, but not so much if you're in that much pain. It almost sounds to me like ER might be a good place right now. Do you have anyone who can take you? Otherwise, a call to the advice nurse maybe in store. Please keep us updated. Lots of hugs.

Cross-stitch gal said:

I wish I could say welcome, but not so much if you're in that much pain. It almost sounds to me like ER might be a good place right now. Do you have anyone who can take you? Otherwise, a call to the advice nurse maybe in store. Please keep us updated. Lots of hugs.

Click to expand...

Wish I could say it's helped but they do nothing for my pain I've been to the ER probably 3 times in the last month! I'm no stranger to pain but this is just awful! My GI said go if you need it but they don't do much. I can't have Tylenol or Ibuprofen! And of course they don't want to give pain killers to a 17 year old! We've called the nurse probably a dozen times already and pretty much everyone says the same thing, which is that there's nothing we can do and to try to get the Remicade ASAP. Looks like suffering is just on the table for a little while

I'm sorry to hear that. Wish I had more ideas...

Keep after them. And please don't hesitate to go to the ER at any point. The fact that the gas is painful has me a little concerned due to my previous history. If you start vomiting please go to the ER as it could be a sign of obstruction. At some point someone has to take you seriously.

Wish you the best. Prayers and support.

Have you tried peppermint and / or ginger tea especially before bed.And instead of lying down sit up with comfy pillows.A heating pad or similar might give you comfort too.
I hope you feel better soon.Oh,and we have a Young Adults thread you might like to check out.

Are you taking a probiotic? Take one after eating your last meal of the day, it may help reduce the amount of gas and improve digestion.

I've tried all of these things! Wish I could say they helped but thank you all for the suggestions!

Would you be able to go to the ER again and ask to be admitted? Sometimes they'll admit you if you've been to the ER a few times and things aren't getting better or are getting worse. (That's what happened with me last year; I had gone to the ER 3x in one week for IV fluids because I was flaring so badly that I couldn't keep hydrated anymore, and on the 3rd visit I asked to be admitted and they agreed that was a good idea.) If they admit you, then they should be able to do tests to try to figure out why you're in such pain, and should hopefully also be able to fast-track the remicade & MTX. Good luck, I hope things turn around for you really soon. Please keep us posted on how you're doing and if you go back to the ER/get admitted.

Lithais said:

I've been known to get this even from a bland piece of chicken

Click to expand...

I get extremely bad very painful wind from chicken.

The only way to ease it, is to lay on my side, cock my leg, massage my abdomen, and let it out.

As a result, I have pretty much given up eating chicken. Mushrooms do the same thing, but with a less painful and a milder reaction.

Things like chicken and sugar, are very hard for the body to process and digest, especially for people like us with weakened conditions.

Also some artificial sweeteners and carrageenan (a food stabilizer), found in candy, has been shown in scientific research to actually cause colitis in mice.

Therefore, it makes no sense to eat such things, otherwise you get caught in a perpetual cycle.

The best way to avoid painful inner wind, is:

* To eat soft foods that are nourishing and easily digestible.

* Periods of intermediate fasting

* Proper food combining when you do eat

Whilst that may not be very exciting for someone your age, just ask yourself what you would prefer : pain or comfort.

Hope you find some relief soon.

Best wishes

Lithais said:

I feel tremendously better if I don't eat at all, but that's not an option.

Click to expand...

[FONT=&quot]
[/FONT]
[FONT=&quot]Yes it is.

It is called Fasting.[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot]Also known as Intermediate Fasting.[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot] If you need food to take medications, then you could have homemade applesauce or homemade soup or homemade bone broth.
[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot] Otherwise, fasting on pure filtered water (not bottled) or caffeine-free herbal teas, or clear broth, or homemade vegetable juices, will help rest your bowel and reduce pain.

Fasting on water is the most popular and most profound method that works best. But I prefer to use a combination of the items, that I have listed above.

The benefits for me are amazing energy and no pain.

Maybe have a read of the book "Fasting and Eating for Health", By Dr Joel Fuhrman, M.D.
[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot]The book describes people with IBD, being able to put themselves into remission with fasting.[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot]However, since the forum moderator has told me not to post links here (not matter how useful - in case they are connected to any form of advertising)......please Google yourself the following sentence, as it goes into more information:[/FONT]

[FONT=&quot][FONT=&quot]“Fasting rejuvenates the immune system – Dr Fuhrman”[/FONT][/FONT]
[FONT=&quot][/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot][FONT=&quot][/FONT] Because of your young age, please only do fasting under medical supervision.
[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot]For me, I have found it the BEST method to improve my condition and reduce pain.[/FONT]
[FONT=&quot]
[/FONT]
[FONT=&quot]Note: Many medical doctors will pooh-pooh the idea, some even say it is unnecessarily or dangerous. Therefore, to proceed, you have to find yourself a medical doctor like Joel Fuhrman, who is also qualified in nutritional medicine.
[/FONT]

Are you being seen by a pediatric GI? Most ped. GI departments have an after hours number you can call. The on-call GI can tell you what to do - if going to the ER is necessary. They can also admit you through the ER.

I would ask the GI if they can admit you to give you Remicade. That will greatly speed up the process. We did that for my daughter - she was admitted so we could give her Remicade without waiting for insurance to approve it.

Methotrexate should not be hard at all to get - it's a cheap medication and you should be able to get it easily. I'm not sure why it is taking time to get you on that - it doesn't require prior authorization or anything like that.

In terms of pain, I'm sure you've tried things like a heating pad? That helps my daughter a little. If it's gas pain, simethicone might help (Gas X). It's over the counter, but check with your GI before trying it.

Milk of Magnesia can also cause gas and crampy belly pain. Have you tried Miralax? My daughter uses that and finds it's gentler.

Hang in there!! I hope you're able to start Remicade SOON!

It is called Fasting.


Also known as Intermediate Fasting.


If you need food to take medications, then you could have homemade applesauce or homemade soup or homemade bone broth.

Click to expand...

Please do not fast without checking with your GI. Having an adult fast is different from having a teenager fast. Teenagers are still growing and developing. They need calories and LOTS of them.

Additionally, a teenager who has IBD and has active gut inflammation may need even more calories than a regular teenager. Since you may already be eating less than you normally would because of the pain, I would not stop eating altogether - it's just going to lead to more weight loss and malnutrition and it's really just does not sound safe.

If you really do want to fast, then I would check with your GI.

Exclusive Enteral Nutrition is a safe option though. That is a liquid diet where you drink formula only for 6-8 weeks. It is used to induce remission and it actually works as well as steroids. It lets your gut rest and you do still get good nutrition from the formula. It should help with the pain.

It is used a lot for kids, less for adults. Most pediatric GIs will be familiar with it. It's used more in the Europe than in the US, mostly because of compliance issues (not eating is hard!). Some GIs will allow 80% formula/20% food (because it's easier to deal with), but it really depends on the GI.

EEN is very effective in inducing remission and allowing mucosal healing to take place - more effective than Prednisone or Medrol.

The formulas used vary. Generally polymeric formulas like Boost and Ensure are tried first. If those aren't tolerated, semi-elemental formulas like Peptamen Jr or Pediasure Peptide are tried. Those are more broken down and easier to tolerate but don't taste good. My daughter was able to get used to them enough to drink them.

Then there are elemental formulas - completely broken down into amino acids. These are easiest to tolerate but the least palatable. My kiddo just could not drink these and eventually ended up with a feeding tube.

It's definitely an option to think about - it works well and will help you with the pain while you're waiting for Remicade.

Good luck!

Second exclusive enteral nutrition (een)
Ds was dx at age 7
Now almost 14
He has used een multiple times
He currently drinks neocate jr chocolate (amino acid based elemental formula )

He used peptamen jr (semi elemental-broken down proteins ) earlier in dx

Definitely ask to speak to the GI (not the nurse )

Een without food just formula is typically done for 6-8 weeks
The formula is so broken down it lets the gut rest and do less work
Plus heal
Good luck

I'm actually already malnourished, and do a lot of accidental fasting. I struggle eating as is and my doctor recommends just eating whatever I can. I was on a formula diet for almost two months because of a tonsillectomy and my stomach was not happy! I was on Ensure.

My GI says that my intestines are inflamed to the point that diet doesn't particularly matter and to try to force me to drink my calories when I can barely eat will be a lot harder. I do eat a lot of soup/easier foods but I have to have protein or I deteriorate rapidly.

I do NOT have any blockages, strictures or anything that could explain my pain. I've had CT scans recently that came back clean. GI doc says simply it's very severe inflammation through several parts. Basically there's nothing the ER can do.

Remicade infusion on Friday everyone!!!!

It sounds like the most important thing is to get the flare under control, so it's good to hear that you will be going in for remicade soon.
I question the "diet doesn't matter" statement, though, and it is something that was told to me as well. I would be curious to see if by making a more long term change without candy, processed foods, etc. you would still have the same effect from plain chicken. Have you looked into dietary options like SCD?

I've been eating Ketogenic/Paleo most of my life (my mother has a lot of allergies) only recently have I gotten to more "junky" foods because it's more tolerable at the moment. It's never particularly helped, sure some foods are worse but I don't see a huge difference. I did stop eating popcorn, hot sauce and various other things that caused a significant amount of pain.

Maya142 said:

Please do not fast without checking with your GI.

Click to expand...

Must only fast under medical supervision. I had already advised them to do that!

Lithais said:

I'm actually already malnourished

Click to expand...

You cannot get malnourished on medically supervised fasting.

But I do understand about being malnourished, as I use to be too, as I was not properly absorbing nutrients from my food. Most people with IBD struggle with this issue.

Good call about stopping the popcorn (one of the unhealthiest junks available), and the hot sauce - both of which would have caused a significant amount of pain.

If you want protein, then things like soft scrambled eggs, and creamy nut butters, and avocado are easily digestible.

In regards to the chicken. If I fry it or roast it, the meat tends to be tougher. To tolerate it, I have to mince it and then lightly poach it.

Anyway good luck with it all.

Good luck with the remicade Friday
Amino acid based (elemental formula such as neocate jr or elecare)
Is extremely broken down so you only need a few inches of healthy intestine to absorb the nutrients
They use in patients with short gut syndrome or fsevere food allergies
As well as ibd

They also use it to induce remission in patients (kids) with ibd instead of steriods
Your GI would have samples of elemental formula for you to try
It's complete nutrition

Remicade can take 6-8 weeks to become effective

If your bowel is that badly inflamed you can be admitted and put on bowel rest for a week or so to allow it to heal. I have had this done a couple times. The idea here is that you do not want the inflammation to lead to scarring.

Lithais said:

I've been eating Ketogenic/Paleo most of my life (my mother has a lot of allergies) only recently have I gotten to more "junky" foods because it's more tolerable at the moment. It's never particularly helped, sure some foods are worse but I don't see a huge difference. I did stop eating popcorn, hot sauce and various other things that caused a significant amount of pain.

Click to expand...

Sugar feeds inflammation. If you're eating lots of candy you are keeping your colon inflamed. Also if you grew up eating a Ketogenic/paleo diet then your body is probably rebelling if you're eating junk. Could you or your mom make you some bone broth and try giving your gut a rest. If you need protein stay away from cheese, but some scrambled eggs or even hard boiled eggs sliced up and put in the bone broth would be tasty and give you the protein you need.
Good Luck with your Remicade!!

Lithais said:

Hey everyone,

I'm at my wits end. I have "painsomnia" every single night. It's usually in the form of very painful gas, and my body just seems to keep producing it. It wakes me up, prevents me from sleeping and never seems to cease! I eat fairly well (a lot of candy, if I'm being honest) and it's happening even if I DON'T eat. Like, nothing. I feel tremendously better if I don't eat at all, but that's not an option. I've been known to get this even from a bland piece of chicken!

I'm currently on Methylprednisone (32mg), Prilosec (20mg x2), and Gapapentin (100mg x3). Attempting to get on Remicade and Methotrexate ASAP.

My pain levels are so high at night it's complete misery. I'm sleep deprived and definitely hurting. I also have regular constipation, that usually turns into diarrhea and back to constipation. Taking Milk of Magnesia for that. They did an upper GI series and I have no strictures or blockages or anything. Definitely have Crohn's, diagnosed through Colonoscopy. Please help, I'm 17 and in so much pain I often can't get out of bed. Typing even this with tears!

Click to expand...

Try phazyme 180 mg 2 of them for gas. I usually take 2 every 4 hours on bad days. Sugar makes my gas and pain worse. Even soda. My Dr has me on 100mg of tramadol every 6 hours for pain. It doesn't give you that high feeling. If the pains too bad I'll add a heating pad. Have you had a CT with contrast? They show more than a regular CT. Hope this helps.

I’m actually surprised your GI hasn’t had you admitted and put on bowel rest. That’s what happens to me when I have a really bad flare. I second the recommendation for bone broth. You can purchase organic bone broth and it has a good amount of protein but is also a clear liquid so easier for your body to digest. I wish both your GI and the ER would treat your pain more seriously.