Need diet to improve colon motility

[RunningDownIBD]

Good afternoon,

I'm writing because I am desperate for some help. My son is 14 and was diagnosed with Crohns at age 11, but had bowel issues his whole life. He has two years of illness with little break. He was on enteral nutrition exclusively for six months - did nothing to help his disease, went to Remicade and eventually had a short remission, got sick again in November, did a boost of prednisone to reduce inflammation and added methotrexate in January. The combination of the 3 made him very susceptible to viruses etc and he spent the next three months with every stomach virus, strep throat, cough, eye infection that anyone had within 100 mile radius, I swear...non-stop sick with non-crohns things. A few weeks ago the horrible lower quadrant pain, heartburn began again. We decided to switch him to Humira. Just did first loading dose.

He has had constipation his whole life, not diarrhea, even at his sickest which was rated severe crohn's following all three prior colonoscopies - blood in stool, etc. but fairly normal labs otherwise. Just got fecal cal protectin from last week back and it was perfect. hasn't been perfect ever in his life. Doc feels that his Crohn's flare left his bowel stretched out and not working; but that it is NOT his crohn's that is causing his pain at this point. She feels he is in remission. His pain is from impacted fecal matter -despite taking miralax every day and sometimes multiple times. It's almost a mechanical thing - his bowel has very low motility. He has had BMs daily or every other day, but they are loose and small and we feel that it is probably just leaking around the stool that is impacted. So we are doing a major colon cleanse the next two days - basically the same as prep for a colonoscopy. THEN i NEED to know a good diet to help him slowly get his bowels working again. He can't handle a lot of fiber. What do I feed him to give him the calories a growing 14 year old needs, but to give him the best chance of actually getting better.
Please, I need help.

Jodie

 

[nogutsnoglory]

I'm sorry to hear about all the hardship your son has gone through these past two years. Fiber is definitely one way to help move the bowels but since you said he is fiber restricted I would urge you to look into supplementing with magnesium. It's used as a laxative and many with IBD are low in magnesium anyway.

 

[hugh]

your starting point for a crohns diet should be somewhere in the paleo/scd/gaps area...
http://www.crohnsforum.com/showthread.php?t=48559
or loads of other threads here...
http://www.crohnsforum.com/forumdisplay.php?f=288

This seems to work for a lot of people, sometimes with tweaking

Don't increase fibre yet
"Despite the widespread increase in the availability
and ingestion of fiber-rich foods, there has been no doc-
umented decrease in the prevalence of constipation in
the United States over the last three decades. This sug-
gests that deficient fiber intake is not the main cause of
constipation "
http://www.medicine.virginia.edu/cl...utrition-articles/SchillerArticle-4-16-08.pdf

Constipation can stem from many causes and you probably have to work through all the possibilities one by one,
Since he has crohns he definitely has disbiosis (unbalanced gut bacteria)
- how's his thyroid?
- more fermented foods (good bacteria)
- I would suggest vegetable juice and water kefir (not milk kefir) in large amounts (start slow, especially with the kefir)
- totally eliminate all grains!!!!!!!! especially processed paste foods, but also whole grains.
"For example, both gluten grains (and I suspect grains in general) plus dairy contain opiate-like compounds that serve to reduce the motility (movement) of your gut. This effect is commonly seen in those who have to take the likes of codeine (also an opiate) for any length of time"

- Eat white rice if you think he needs need carbs (he doesn't, but it can be hard for some to eliminate all grains.) Other carb sources are sweet potato, yams, other tubers and all fruit and veggies.
He will get plenty of fibre from fruit and veggies but they should be well cooked to begin with

Restoring gut bacteria is crucial to normal poop

These page are well worth a look......
Dealing with Constipation (paleo)
http://paleodietlifestyle.com/dealing-with-constipation/
Causes and Cures for Constipation
http://perfecthealthdiet.com/category/disease/constipation/
http://www.thepaleomom.com/2012/05/treating-constipation-without.html

maybe this one too?
Understanding Poop – Constipation, IBS, and Other Digestive Disorders
"Adding fiber to the diet to try to help pass the stool can be “dangerous because the expanded fiber has no place to go, and may cause hernia, obstruction, or perforation of the small and large intestine alike.”"
http://theprimalparent.com/2011/08/31/understandingpoop-constipation-ibs-digestive-disorders/

 

[wild_one353]

like the above poster suggests, try the scd.
avoid refined carbs, corn, barley and rice(brown/white/all), those are the ones that constipate me and are to be avoided as per SCD guidlines, but this isnt the entire SCD guidlines, just the ones the contribute to constipation in my experiance.

i find wheat, oats and well/properly cooked beans that have been soaked and drained at room temp for 10-12 hours, to be tolerable despite what the SCD specific carbohydrate diet says. this may or may not apply to you, we all may have slightly different pathogenic bacteria in our bodies.




soluble fiber actually contributes greatly to motility, this has been shown in multiple experiments, getting more fiber from whole grains may help. but alos in ibd, it may contribute to constipation, so using something like psyllium may constipate more, but trying a small bit to see if it helps might work. otherwise just eliminating refined/white flour and replacing it with whole grains, would add some soluble fiber in his diet and could do the trick.

oh, by the way, some brand of wheat may cause horrible reactions in people with IBD, i actually can fully tolerate gold medal whole wheat flour, ive tried 2 other brands and have relapses.

i hope you try some of this out!

 

[RunningDownIBD]

Wow, fourteen hours of reading later I feel excited and scared to death. What a lot of information to absorb. Life has a funny way of coming full circle, too. I also have Crohn's. After my son was born in feb of 99 I had the worst flare of my life (started while I was pregnant) which included months (literally) of hospitalizations, many obstructions, abscesses and fistulas and finally a full perforation that left me grateful to be alive but at an absolute low. I ended up with two resections (duedenum -about 5 inches, reconnected and the more standard ileum, valve, cecum area) and a follow up surgery for a rectal fistula, before finally getting sent home. I was miserable.

I finally saw a naturopath doc who gave me some abdominal massage techniques and some plans for getting daily activity and talked to me about diet. I did SCD for about 6 months and then had another obstruction and was put on Remicade. It really made a difference for me. I kept doing some parts of SCD...I know that it wasn't SCD because I wasn't strict with it but some of the components were key to me getting my health back, along with exercise and finally being able to get some good sleep (pain had kept me up prior). Over time I added most things back and really had over 10 good years.

When my son got sick, we did some of the things I did/do diet wise to avoid flares, but it got where it wasn't enough. I guess somehow I ended up in the day to day cycle of just trying to survive. He did six months on EEN, ng tube every night. I wouldn't say we were lazy about trying to get the best solution for him. We didn't want to start on biologics until we tried everything. He was so skinny and in constant pain. The EEN helped him gain a little weight but it did not help his crohns in any way. after six months new scopes showed expanded disease. We ended up adding Remicade and he, like me, responded very well. Last summer he had a couple of months of feeling really pretty normal. But he tanked again in the fall and has been miserable.

During that time, I failed to get one of the key ingredients to my wellness...SLEEP and started an incredibly painful flare of what was diagnosed as RA, but is intermixed with a diagnosis of spondylitis or IBD related arthritis. Luckily my bowels have been fairly good - I absolutely tolerate NO raw fruits or vegetables and have self limited the grains because I just know they don't feel good. I tend to eat a lot of meat (usually elk) and cheese. And if I don't get my two cups of coffee in the morning, i get constipated...

Anyway, I guess all this is just a venting process. I've read a fair chunk on the paleo and scd again (not as much yet on Gaps which I hadn't heard of until last night). We are going with the colon cleanse today and then we will BOTH start the paleo diet. I'm nervous. I don't feel qualified to do this really, but with his latest fecal and blood tests showing that his Crohn's is doing well, but his pain and obvious discomfort at all hours - he never gets a good sleep, and thus I don't...i feel this makes sense. I will take any and all support I can get.

First step, gettin a 14 year old boy who has been sick all but about 2 months of the last couple years, who has lost every bit of muscle, who is angry and frustrated, who I have told over and over and over again "this should help"; i never say it will help any more because of all the failures...the kid put a tube up his nose every day for half a year and still didn't feel better... He is NOT convinced diet will help... First step is to get him to give it a fair shot. Prayers welcome. Thanks for any and all advice - none is unwanted. jd

 

[RunningDownIBD]

I think i may be reading too much. I've now found strong evidence that we should not eat any meat and also that we should embrace starches and, well, pretty much every other combination of foods/non-foods/supplements. I'm so confused. I also have said a gazillion times over the last almost 20 years I've dealt with Crohn's that I am convinced that diet really doesn't CURE Crohn's...it just helps or complicates it based on a range of situations. When I was really sick I could only tolerate liquids that were luke warm. It makes so sense, but it was my reality.

I just wish there was a cure. Don't we all?

What do I do about the bowel motility? This is new... But I also have the RA to deal with. Preparing a lot of complex food, even shopping for fancy ingredients is hard from the standpoint that I'm extraordinarily fatigued. Sometimes my hands hurt so much I can't use them. Its gotten better with methotrexate but I still have some horrible days. The fatigue (perhaps from MTX) is overwhelming. I work a more than full time job and have a seriously ill son and I'm a single mom. How do I do it all?

. Dylan is my number one priority so I'd do anything to make him feel better...but how do I know what will really help? I was positive EEN w/NG tube would help - talked him into it. Then Remicade and other drugs... Argh. Thinking of having him pick five foods he does well on and just doing those for the next week and then add back things one or two at a time. His doc suggests I need to let him eat anything he'll eat because he needs the weight. I'm just so lost. Now I guess the remicade/mtx did work - his Crohn's does look better than it has since diagnosis. But he still feels horrible and can't have a bowel movement without a ton of miralax/exlax, suppositories. I just want a magic bullet.:ybatty:

 

[hugh]

I think i may be reading too much. I've now found strong evidence that we should not eat any meat and also that we should embrace starches and, well, pretty much every other combination of foods/non-foods/supplements.

Yes, you are reading too much.
You need a starting point and a direction to go in,
You can always modify (or backtrack) later.

By all means, keep researching, but you will always be able to find someone making a well reasoned argument for almost anything. Most often (and in my case too) they will cherry pick to support their own beliefs.

Take a break from that and come back to where you are......

Your situation reminds me of a talk i heard long ago by a man named Goenka who taught meditation,
He was talking about all the seekers who would do a bit of this and a bit of that and take some things from one tradition and some from another.
In his view it was like a man trying to dig a well for water, he digs a hole here and then thinks that he might have more luck over there so he digs there and then tries again somewhere else.
At the end he is exhausted, has lots of shallow holes in the ground and no water.

I understand the stress and the fatigue, but stress and fatigue are not helping you.

You have tried SCD and felt that you got benefit from it even though you weren't strict
This tells me that you may get more benefit from doing it properly

Paleo/SCD/GAPS has a proven track record for many people so I would strongly urge you to start there.
My preference is paleo, but at this stage they are all the same, refine as you go
As you get into it there are differences and choices to be made (yougurt/no yougurt, sweet potato/no sweet potato, peanut butter/ no peanut butter)

I'm so confused. I also have said a gazillion times over the last almost 20 years I've dealt with Crohn's that I am convinced that diet really doesn't CURE Crohn's...it just helps or complicates it based on a range of situations. When I was really sick I could only tolerate liquids that were luke warm. It makes so sense, but it was my reality.
I just wish there was a cure. Don't we all?

There might be no cure but i'd be happy with constant remission, normal pooh, and a healthy weight (which is pretty much what i've got)
A diet that helps is obviously the right choice, how much it helps depends to a large degree on how wisely and closely you follow it (for example, eating yougurt because it was 'legal' even though it gave me D was not wise, eating nuts when they came out undigested wasn't wise).

What do I do about the bowel motility? This is new... But I also have the RA to deal with. Preparing a lot of complex food, even shopping for fancy ingredients is hard from the standpoint that I'm extraordinarily fatigued. Sometimes my hands hurt so much I can't use them. Its gotten better with methotrexate but I still have some horrible days. The fatigue (perhaps from MTX) is overwhelming. I work a more than full time job and have a seriously ill son and I'm a single mom. How do I do it all?

Paleo solved my joint pain (Numerous case studies have shown that RA symptoms can be alleviated with grain-free diets.)
Paleo isn't complex, it's simple, so simple that a caveman could do it without a kitchen, a knife or even a saucepan.
We are so lucky, we have so many ways of making our lives easy.

Bowel motility may resolve on paleo,
Probiotics should help (Kombucha/water kefir, fermented vegetables)
Vegetable juice.

Start there and add/subtract what you need.
It's just meat and veggies, later add fruit and nuts.
Most of the 'fancy' ingredients are optional, and can be bought on line if there isn't a shop nearby-
I just went through my pantry -
coconut oil, organic wheat free tamari (good soy sauce), arrowroot powder, good olive oil for salads and ghee- i'm sure there are a few other 'fancy' ingredients,

It took me one decision, and one decision only, - am I going to give it 100% to see if it works.
After I saw that it worked I had very few slips, they just weren't worth it.

Give it 100% for 30/60 days, don't give it 98% for 6 months

. Dylan is my number one priority so I'd do anything to make him feel better...but how do I know what will really help? I was positive EEN w/NG tube would help - talked him into it. Then Remicade and other drugs... Argh. Thinking of having him pick five foods he does well on and just doing those for the next week and then add back things one or two at a time. His doc suggests I need to let him eat anything he'll eat because he needs the weight. I'm just so lost. Now I guess the remicade/mtx did work - his Crohn's does look better than it has since diagnosis. But he still feels horrible and can't have a bowel movement without a ton of miralax/exlax, suppositories. I just want a magic bullet.:ybatty:

I like the deal Charleigh made with E, to try it and see if it was good,

Your doctor probably had 10 hours of nutrition during his whole degree, and most of that was the ******** food pyramid.
I only gained weight once I went paleo. (– it doesn't matter how much you eat if you are not digesting or absorbing it)

The “SCD intro diet” (or something similar) is a good way to start,
Obviously you cant just give him a carrot and say 'here ya go'

 

[Clash]

Also check with your GI, my son's GI group is running a clinical trial of SCD right now through the children's hospital they are associated with. Pediatrics GIs should be concerned with weight because that affects vertical growth. You encounter plenty that just say keep the calories coming in whatever he will eat, others that will offer EN and still others that will guide you to a diet like the Paleo/SCD diet. It may be harder to get them to okay a diet that may begin with weight loss but they can search for the clinical trials going on with SCD to get answers to some of their questions. It may not be any single one of these that fully improves you...you may have to make tweaks along the way.

I do understand about getting a teenager to do something you can't guarantee. Heck, I still struggle with getting my son to take his Vit D everyday since he feels no immediate result(ie take Tylenol=headache gone). I hope you both find relief soon.

 

[RunningDownIBD]

So, I woke up, read your post on my phone, wanted to strangle you. Took the usual 15 minutes to stretch and try to get my body loosened enough to stand up. Went for my usual four mile run - the first mile in pain, the last mile feeling good. It is my meditation. I no longer want to strangle you. I truly appreciate your thoughts and your taking the time to reply. I get defensive because I'm not sure I know anyone who works harder than me at being healthy...plenty who work AS hard for sure.

I did do SCD correctly and 100% after my surgeries, 11 years ago. It helped me for certain. I obstructed and spent 5 days in the hospital after almost six full months of it. At that time I started Remicade and when I left the hospital I continued a modified version of the SCD. I did a lot of what you mention - if I could boil it or broil it, I did. I grew up in cattle country in Montana and ate pretty much nothing but homegrown beef, pork and chicken and a fair amount of squash. And potatoes. I go back to this when I'm sick. We no longer have the farm, but we still hunt. Most of the meat we eat is elk fresh from the Rockies. I supplement B12 (injection) and folic acid, calcium and vitamin D. Like you, I had about 10 years of mostly remission. This way of eating and listening to my body worked. I also became fanatical about exercise. I run almost every day. And I learned to say no; to rest. Having enough sleep has been key to me being in remission.

My son's illness has rocked my world. I believe with my whole heart that MY diet would still be working for me IF i got enough rest. I can say no to extra work, going out with friends, reading another chapter...but I can't ignore him moaning in pain in the next room. I just can't. I don't believe my diet would have worked alone...I needed the Remicade and still do. I think if I figure out my son, I will find my remission from the joint pain again. I believe this.

So what to do about Dylan. We are going to go 100% dairy and grain free. This makes sense to me AND to him. He is a full player in his health decisions. He has to be. Feeling like we have some control over these diseases is really important. He needs to have some control. We're starting today with cooked vegetables and lean meats. I ordered all the paleo info and will keep reading it and making sense of it. We'll do this 100%. We'll add in the nuts and oils and fruits and things when we feel comfortable with it. I'm going to push him to exercise every day too. I'm looking for a yoga instructor who will come to my house and work with him.

We'll keep fighting. I will keep reading this forum and any and all resources that you post. i'll post how we are doing. I really and truly to thank you for all the information. I'll absorb and figure out a plan for us and forward we shall go. Thank and have a wonderful day!

 

[Charleigh]

You can look in the SCD/Paleo/GAPS subsection and follow E's journey. He was eleven when he was diagnosed with crohn's. He was very sick and he had lost a great amount of weight. I was so scared for him. We chose to try diet first, in lieu of meds. I am a natural person who is leary of medications and pharmaceutical companies. I also figured anything was worth a try, especially when I looked that the pages and pages of side effects for the med our pediatric GI wanted E on.
I think the book Breaking the Vicious Cycle explains the science behind the diet and it was what convinced me to go this route. I think the GAPS is probably great too but I haven't read it yet. It is considered a more updated version of SCD. In the end, we tweaked SCD to look more like GAPS by...
not using any dairy at all (not even the much adored yogurt)
not eating peanuts or legumes
adding real 100% cocoa (after D was gone)

I do NOT suggest allowing or trying beef for a while. I simply know too many people with crohn's who, regardless of how great they are doing, simply can't digest it. As awesome as E is doing right now, beef still messes with him. He can eat raw onions, cabbage, strawberries, etc and be fine but not beef.

I used the slow introduction of foods as described on the www.pecanbread.com website. At first, E was so messed up inside most fruits and veggies (even cooked) made him sick but as he healed he was able to increase what he could eat. He can eat any fruit or veggie now, even raw

Hugh has already given you some great information and some great thoughts. He is like a walking paleo reference book. Yes, sometimes people want to strangle him because he doesn't have the gift of sugar coating things , but he is a great, great asset to this forum and I have appreciated his input on numerous occasions.

 

[Charleigh]

.

So what to do about Dylan. We are going to go 100% dairy and grain free. This makes sense to me AND to him. He is a full player in his health decisions. He has to be. Feeling like we have some control over these diseases is really important. He needs to have some control. We're starting today with cooked vegetables and lean meats. I ordered all the paleo info and will keep reading it and making sense of it. We'll do this 100%. We'll add in the nuts and oils and fruits and things when we feel comfortable with it. I'm going to push him to exercise every day too. I'm looking for a yoga instructor who will come to my house and work with him.

I also wanted to add in response to the above quote, you are a very smart cookie! People are always praising me for being such a great mom to push through on a diet path, but I couldn't do it without E! Ultimately, he is in control of what goes into his mouth. He can't be with me 100% of the time so he HAS to be on board. At first, he was devastated at the thought of no grains and no dairy. I told him to give it 30-60 days, that was it. If we saw no progress in that time, we would move on and find something that works. I think knowing that it wasn't "for life" during that most difficult adjustment time was a huge factor in his success. By the end of 30 days, he was hooked and as far as missing old foods, he was "over it".

 

[KnightRobby]

Please keep us updated on your son and best of luck with you. Take it very slow with raw fruits/veggies and increase fiber very slowly. I have the exact problem he has and I am in a major flare because of one reason: no sleep. Also, no sugars at all. And I agree: No grains, no meats.

Please let me know how it goes and how he is doing. I'll be following this thread. I am really hope it works for him. Poor guy!

 

[UnXmas]

I haven't read all the replies yet, so I apologise if I'm repeating things already said.

I can't offer much help, but a couple of things I thought of reading your posts.
I've also been told I had low bowel motility and my colon was found to be impacted when I had surgery, and my colon was removed. I didn't get an ostomy, the remaining bowel was joined up again by the doctors. This isn't intended to worry you - I had a lot of complications that most people - either with Crohn's or motility problems - wouldn't experience.

Although I have diarrhoea, my doctor thinks because of Crohn's or because of "impaction and overflow" - loose stool from further up the bowel that's overflowing round the impacted lower bowel. So even though I have slow motility, it doesn't necessarily result in constipation. But I wasn’t always convinced of the explanations the doctors gave me for my symptoms – it didn’t sound like what I actually experience. It sounds like your son may also have multiple issues affecting his digestive system, which can make it very difficult to determine what issue causes which symptom and how to treat them. I know how difficult it can be when the diet advice for Crohn's conflicts with the dietary advice for poor motility.

Fibre is so complicated because it seems that whether people are treating diarrhoea or constipation, fibre can have either good or bad results. It isn’t always the case that fibre helps constipation. I know it makes my digestive problems much worse, and I do much better on a low fibre diet. Some advice on diet would tell me to expect the opposite. It’s such an individual thing, so the only real way to know what will help is to try it, but start slowly on small dosage.

I’d be very careful about a colon cleanse. It can be dangerous if it results in losing too much water, etc., Clearing the bowel with prep before surgery or colonoscopies, etc. can be so draining physically. Before I had a collectomy, if my bowel got impacted I was prescribed a rectal catheter and enemas to use. These aren’t nearly as harsh as the strong laxatives used in bowel preps, and it didn’t require restricting my diet before hand, as you do with preps when you are limited to only clear liquids for a day or so before the prep. The enemas and catheter were something I could use whenever I needed to – everyday or every bowel movement if I needed it.

Have you tried stool softeners? These may help, and are safer than some other types of laxatives.

I find meal replacement drinks - Ensure, Fortisip, Complan, etc. - a good way of getting in lots of calories as well as the nutrients you need.

I completely understand the feeling of reading too much and finding so much conflicting advice. The best way to approach it I feel is to do your research, but don’t take any of it as gospel. Try to make only one change at a time – e.g. adding fibre to his diet, or trying a laxative. This is the only way to work out which changes are a result of which factor.

Personally, I would advise against any major changes, such as completely new and complicated diet. I know the feeling that makes you feel like you have to do everything, try everything, and the sense that a major change will result in major results. But I know I feel so much better – physically and mentally – since I learned to take my search for treatments at a more relaxed pace and without the sense of urgency that I must act as soon as possible and without worrying that doing anything wrong will ruin my attempts to be healthy. I’m sure you’re not as worked up as I used to be, but I’d still suggest that it’s a good idea to realise we can’t completely control our illnesses. We don’t have to be responsible for all our treatment, and it’s not our fault if sometimes we’re not able to achieve the results we want. It can take a while to find things that help. Rest and avoiding getting too stressed are so important too.

You're clearly doing everything you can for your son, and he'll benefit from knowing this regardless of whether or not you're able to find a diet that helps in. Most people do find they can improve their symptoms to some degree through diets and medications. It can take a while, but eventually you'll figure out what works best.

 

[RunningDownIBD]

Thanks everyone. I think we all know what a roller coaster chronic illness can be. As I said, i had around 10 years of remission from my crohns; but it never completely left my mind. I didn't dwell on it exactly, but still thought of it all the time. When I had any gastric distress, or added fatigue, I reverted back to a liquid, very low fibre diet, got extra rest - I think you know what I mean.

Overall, I think it made me more healthy. Strange huh! I'm in much better shape than many of my friends. Dylan teases me about getting old but the other day we passed this guy wearing his hat backwards and he was like, why do old people try to act young? I was like, I don't know. He said, no, mom, you, don't. You really are young. You laugh and play and really are young. it was such a sweet thing to say, especially when he wasn't trying to butter me up for something! I have days when I feel 100, but overall I think I'm going the right direction and I'm sure that we'll get through this too!

Dylan is being a great sport, embracing the diet changes we are making. I'm proud of him. We'll enjoy chicken noodle soup the next few days. We'll watch beef carefully. It's a strange one. When I feel bad, ground beef and eggs are things I have always been able to eat. My brother (who also has crohn's) can't tolerate ground beef ever. He can once in awhile tolerate a beef steak, but never ground beef. Maybe it has to do with constipation vs diarrhea. We'll leave it out for awhile. What's the deal with potatoes? I've read a little but i wonder all your thoughts on them?

I really appreciate the support and discussion. That pecanbread site is amazing. Thanks for sharing it Charleigh. Hugh, please don't take offense that I said I wanted to strangle you-the feeling passed quickly! I think it is really a defense mechanism that I revert to when I'm frustrated. Luckily I don't have a violent bone in my body. And I really enjoyed your story about digging holes...I definitely do that sometimes! It'll be a good reminder to me to focus!

Charleigh, so glad that E is continuing to improve. I am so happy to hear it. Read your whole thread and will keep following it. He sounds like a wonderful kid.

Thanks also KnightRobbie and Clash. Much appreciated. Dylan's GI is pretty supportive of diet changes. She suggested that we cut dairy from Dylan's diet for 30 days and then see how he's doing. If he still struggled, then cut something else. She is wonderful about talking TO Dylan. We feel lucky to have her. My GI indicated after my colonoscopy two weeks ago that my colon doesn't look like i even have crohn's and I should keep doing what i'm doing. unfortunately, my anastomosis created a u=turn that makes it impossible to get past with a scope so its hard to say what I look like in the small bowel...where my disease has always been. In any event, I don't feel a lot of GI distress, it really is the joints, eyes and fatigue that have me struggling. One day at a time.

Hope everyone has a great day!

 

[KnightRobby]

I hope the diet is going well. I definitely do not want to impose on any changes you are making, but I do have an opinion on soups and broths. I guess I'll give it (lol). Especially concerning my own severe constipation. My own personal experience with broths and soups (even sometimes low sodium) has caused more constipation because of the sodium alone. Alkaline foods are incredibly important as well (Veggies, fruits, Kale, etc). I recall I was eating a ton of acidified foods (my family has never been good with eating...that's changing quickly). I understand a lot of IB-C patients have problems with fiber, protein, and starches. I know I do.

If there is anything else I would say, is how is his breathing methods? Does he ever use his abdominal muscles to breathe? Or is he completely tight around that area from as result of a pain reaction? I know I am all the time. In the past, I have noticed total relaxation (for long periods of times) gives the body to heal (combined with your diet changes you are implenting for him). There's not one magic method. So just make sure he listens to his body. At some point though, good gentle exercise should help constipation too (with tons of water).

Also, training the body to stop defending itself from the pain by putting air back into the stomach region has seemed somewhat important for me too. Again, combined with diet/sleep/stress reduction (right now I feel a little better simply by getting a good night's sleep - it's amazing what it can actually do. I take Meltonin 3mg). You can actually have him test his breathing by placing his hand over his lower belly and his other hand on his very upper stomach (near diaphram). The diaphram is the area he wants to focus on expanding for a couple times a day. Maybe give it a try or ask him to breathe normally and feel around his stomach to determine if you'd like to try this...?

I am looking into other things for myself right now, since I am having SEVERE pain in my entire abdominal region after pain meds and laxatives (please avoid laxatives at all costs). In the case of natural laxatives, warm prune juice with a tbsp of olive oil has provided relief within a few hours for many people. It actually does at times for me. I'd definitely start there just once to see how he handles it.

Keep us updated on his progress. I honestly wish I'd never trusted the doctors telling me that laxatives were safe. They've really done major harm to me.

Good luck.

 

[KnightRobby]

PS: I wanted to make sure to add something important. Make sure you avoid sugars, and as such, too much natural sugars can also be a problem. Therefore, dilute fruit juices with water and/or look for juices that are sugar free (I've heard Welch's is the very best brand).

Keep a food journal for him too. Once again, I am staying hopeful for him.

 

[RunningDownIBD]

Hi all, Thought I'd report back after two full weeks of no grains or dairy and two loading doses of Humira. I am very hopeful. The last 5 days have been the best he has had in months and months. In addition to the diet changes, he's been doing a 30 minute or more walk with me every day and we've added yoga twice a week. This incorporates the relaxation and breathing techniques that really are wonderful for anyone. I think starting with a cleaned out bowel was really helpful too. This morning I woke him up to see if he wanted to go for a hike with me before church cause it was supposed to get stormy all afternoon - he popped up and out we went. It was glorious. He hasn't taken miralax at all the last five days but still had BMs. He was supposed to see his pediatric GI on thursday but he asked if he could PLEASE stay at school to do his science project (the famous egg drop). His GI ordered some labs for us to do after school and gave her full blessing. He's talking about summer camp. It's just been wonderful. I really do think that he was just so bound up that it was hurting him both up and down. Getting cleaned out and then not harassing the bowel with a lot of roughage and dairy has been great. We don't have the labs back yet, but I know they'll be good.

My official tri-rock san diego training started yesterday. I feel energized and ready to go. If the boy is doing good, I am! THANK YOU to everyone for your support and kindness and ideas.