New diagnosis wondering how to figure out what foods trigger???

[Tysons-Mom]

My 16 year old son diagnosed last week with Crohns after having Colonoscopy and biopsies. Been bleeding with bowel movements for 4 weeks. Local doctor put him on (generic) ENTOCORT 9mg daily and referred us on to pediatric specialist which we do not see till Oct. 11th. Wondering how long till bleeding stops? He has been on meds for 1 week and bleeding has slowed down but not stopped. Also how do we figure out what triggers it? He is not a big eater, loves the typical teen foods hot wings, pizza, tacos and cereal and he is a big soda and chocolate milk drinker. Where do I begin? Together we decided he would cut out soda and spicy wings first. Not sure what I'm doing, how long do I give it after cutting out food for stomach aches to go away? If they don't go away after few days does that mean something else is triggering the pain? Do trigger foods bring on the stomach aches asap? He was doing great with no stomach aches for 3 days and yesterday he had stomach pains, still has some today. He ate pizza last night, pains came after eating pizza, BUT he had pizza earlier in week and had no pains after eating it. We have lived with him having stomach aches for so long that its hard to know. How do I know if he is Lactose intolerant? As a child he would get stomach aches after milk but never loose stools. He is a very small 16 year old junior in high school only weighs 100lbs and often gets asked if he needs kiddy menu, which is so heartbreaking. Will he gain weight when crohns is under control or will this always be a problem. He also has terrible canker sores in mouth this summer, one after another not a week gone by he doesn't have one, any suggestions for this, surgeon who did scope said this is common. Wish we could of gotten into specialist sooner... so many questions and SO worried about him!!!! Any info would be SO MUCH APPRECIATED!!!

 

[Clash]

Welcome to the forum. Sorry for all you are having to deal with.

My son is 16 he was dx'ed last year. He went on Remicade infusions and the change was almost immediate, all of his symptoms went away quickly. Once we got through the loading doses he could not make it the whole 8 weeks without symptoms returning. His dose was upped, his schedule tweaked and finally we added methotrexate, which seemed to finally get him to feeling great.

As far as diet, you could do a food journal to see if you can determine foods that bother him when flaring the trouble is when they are inflamed food stuffs passing over the inflamed tissue can cause pain regardless of what it may be. He could try the low residue diet it is a diet that is recommended during flares. Some members here follow the paleo diet or the SCD diet and find that they help.

I hope your son finds relief soon. It can take some time to figure out all the ins and outs of CD since it is very individual but it does get easier.

 

[CrohnsKidMom]

My heart goes out to you! We are pretty new to this journey as well. My 8 yr old son was dx'd in March. Others will be along who can give you better advice than I, but I do know that processed foods bother my son. He was never lactose intolerant until his initial flare, then all of a sudden milk gave him big belly pains. He had ulcers in his mouth too. If a certain food hurt his mouth, we could bet it would hurt his stomach. My thought is that your son's pain is due to the inflammation the disease has caused, and the foods he is eating is just adding to the pain. Try foods like well-cooked, easily digestible veggies, low-fibre bread, and lactose-free white milk. Once he sees a GI and gets a good treatment plan going, I'm sure he'll start to feel better. Take care!

 

[Kev]

Hi there... the food journal/diary is your best bet... but it isn't like a yes/no scenario. It will let you track trends... (like, while flaring, even a glass of water felt like I was eating the glass)... and track everything that goes in.. foods, beverages, candy, gum, pills, vitamins (I became severely lactose intolerant... knew it was in milk, but also in cheese .. some more, some less, some none.. and in margarine... and as fillers in pills, even vitamins.. that discovery took me a long time of tracking my diet input, pain levels, gas levels... and.. the squemish part..output).. Processed foods seem to be bad, (tho some folks don't have an issue with them), sugars, carbs... softer cooked foods do result in softer stools... but also.. how much fluid intake is in his diet... is it balanced? I had the benefit of meeting at lenght with a nutritionist who dealt with IBD patients. I'd recommend you consider that, or do the legwork yourself. Body can't process fibre, so it can cause extra wear/tear... residue adds bulk to waste, more unprocessable stuff, so it should be avoided/limited. I was on a hi protein, low fat, low fibre, low residue, lactose free diet........ bland, dull, a lot of work to maintain/sustain, but not a lot of fun. But a food diary... it saved my bacon (although I couldn't eat it back then) many a time.

 

[Mehita]

Is there any way you can see a pediatric gastroenterologist sooner? It sounds like he is currently flaring and has been for awhile. Really, the only way he's going to get better is with treatment, something more than Entocort, and you need the help of a GI to figure out what that should be. Can you or your doc call and say he's flaring and needs to see someone ASAP? I'd even take an appt with a nurse practitioner. I'd hate to see him end up in the ER.

There is a lactose intolerance breath test that the GI can run.

For diet, since he's flaring, like Clash said, try low residue, maybe low fiber... maybe even just liquid nutrition for awhile to calm his gut down. Boost or Ensure would be easy.

Once you get proper treatment started, many, if not all of his symptoms will lessen and go away. The stomach aches, canker sores... but not much will change until you get into the GI.

Hang in there!

 

[Sascot]

Hi and welcome. Sorry to hear about your son's diagnosis, it is a stressful time. Diet is a complicated thing. Our GI told us that diet makes no difference but to stop eating something if it caused pain afterwards. I did some reading around, and some people have great success with diet, others not so much.
All we do is avoid things that are hard to digest - I cook all his vegetables, peel all fruit, stick to white bread instead of brown and avoid nuts/sweetcorn/popcorn. It's very much trial and error.
Good luck, hope the appointment goes well!

 

[Tysons-Mom]

Thanks for all the advice and input, this is just so overwhelming at times, I just wish it was me dealing with it and not him! I just keep reminding myself and him that it could be a whole lot worse, of course he doesn't see it that way. The surgeon who did the upper and lower GI said his stomach was perfect, but we saw pics of bowels and they were red blood. He consulted with a GI and they put him on the ENTOCORT. What should his treatment be if not ENTOCORT? Of course our insurance pays 100% After we reach $7500 so we paid out of pocket $1100 for the ENTOCORT and he has been on it 1 week, surgeon said it could be 3 weeks before he sees relief and bleeding stops. Does this sound correct? Being a mom, I was hoping for instant relief!!

 

[Tysons-Mom]

I just searched ENTOCORT on the forum and as a general rule it says 3 weeks, so I guess the surgeon knew something. We have no specialists here where we live so we have to travel a few hours. They did put us on an emergency list if anyone cancels they will get us in sooner. His blood count was 10.2 Dr said it should be over 12 so they are going to check it again in 2 weeks. The most frustrating thing is as a 16 year old boy he HATES talking about it and all my questions... I try to get it through to him how important it is to communicate how he is feeling etc. not sure if i am doing the right thing asking him how he is feeling, stomach pains today etc or wait and let him tell me at his age! UGH so tough being a parent!!! I have this pit in my stomach, just want to know my child will be ok.

 

[archaeodani]

Mine was dx 2 weeks ago, the day of her colonoscopy/endoscopy. She was hospitalized for 4 days THAT day, due to severe anemia. She was on a continuous IV drip, blood transfusion that night, and twice a day steroids (unsure if prednisone or other steroid), to get the inflammation under control

it's the prednisone and azathioprine that currently is keeping my kidlette's issues at bay/under control.

we found this weekend, hot dogs (highly processed, and high nitrates) kicked her HARD. BAAAAD idea.

someone above posted to get him on a low-fiber/liquid diet, and I agree. This will help you reintroduce foods and track trends. This is the ONLY way to be able to know for sure what can/will cause flares, or problems during a flare; and what foods will actually help..

people ask me about low fiber and how that can't be healthy.. I figured out an analogy for them -- people with IBD can't eat high fiber because it inflames their systems.. they still don't get it.. I then ask them to eat/swallow/attempt to digest a square of sandpaper and see how THEIR bowels like it.. it's the same thing for IBD sufferers and high fiber.. We were advised to consume things that are LOWER than 2g fiber per serving - that really is helping..

hugs

 

[ChampsMom]

Hey Mom...

Welcome to the forum... So sorry to hear about your son. My first thought is along the same lines as Mehita - can you get him in sooner? IF at all possible I would try (even getting on their cancellation list by calling daily).

When he was first diagnosed he LIVED on mashed potatoes, beef gravy and corn bread (that didn't actually have pieces of corn in it). Easy digestible foods.

Regarding food I believe you will find a wide variety of what people do pending the nature of their disease, trial and error and beliefs. Hence, this is what has worked for my son who was diagnosed about 3 years ago at the age of 13 (now 16). He follows the advice given by the nutritionist from our Children's Hospital. Here's the list & instructions she recommended:

NO popcorn - EVER!!
NO seeds - EVER!! (which includes seeds that come in fruits/veggies - ie, he removes the seeds from a cucumber, doesn't eat strawberries, unless he peels the seeds/outer skin, no raspberries, etc. a seed is a seed).
No nuts - EVER!! (except boiled peanuts, but he has to remove the skin if he eats them.)
NO regular dairy products (he drinks full fat lactose free milk, eats veggie cheeses, tofutti - it's like cream cheese made from tofu, lactose free ice cream, etc...)
NO raw veggies (except he can have a small salad of lettuce occassionally or one peice of lettuce on a sandwich, but not daily).
Low ruffage/fiber (he can eat potatoes, but no skins; apples - same thing; no celery, no corn - cooked or raw).
Low to no citrus (no oranges, pineapple, grapefruit, etc...)
Low Sugar
Low Soda (maybe 2 per week - if he's going to break a rule this is it -but only diet)
Low fatty foods (he can eat steak, but not the fatty part).
Low greasy foods (he will eat french fries, onion rings, on occasion)
Low to no spicy foods (though he will on occasion dip a chip into a mild salsa).

(I think that is everything...)

When they first told us I thought, "What on earth is he going to eat?" As it turns out - everything else! I chalk some of it up to puberty (which he took forever to get into in comparison to all his friends), but since diagnoses 3 years ago, he has put on over 70 lbs and has grown over 7 inches - most of it is muscle mass as he doesn't have a lick of fat on his body! He is still a slender kid - at 5'10", 135+ lbs, but he's gone from the 10% to the 50% in height/weight.

Another recommendation the doctor and nutritionist gave was because it is harder for his body to process food, he should NOT eat large meals - instead he should eat multiple meals - if he's hungry it is time to eat. He takes that VERY seriously - laughs! He carries a medium size cooler everywhere he goes. He drinks a ton of G2, flavored water - he likes those mio water flavoring things.

At his diagnoses he had ulcers that ran from his mouth, esophagus, stomach and into his small intestines, and inflammation at the top of his large intestines near the terminal ileum.

This was not an easy transition for foods for him. He was my after school cucumber, carrot, salad snack eating kid.

They say foods do not cause flares, but we are not taking any risks to upset his GI tract.

Good luck to you and your son! Keep the food journal - it's stellar advice!

God bless....

 

[Clash]

Tysons-Mom, I was in the same boat as you as my son was 15 at diagnosis. He didn't like to discuss his CD or symptoms and I was constantly asking, "Does your stomach hurt?", "Are you tired?", "How are your bms". I think it is just a parent's natural reaction and a teen's to not open up. What I did find over time, though, was that when issues did arise that my son felt were concerning he would come to me. I had the discussion with him that it was important that if his symptoms changed that he be open about because it was part of being "in charge" of his life. Now, I still get antsy at times and occasionally nag but for the most part I rely on him to come to me.

It is so hard to watch our children go through this and it just takes time for the parent and the child to navigate all that CD entails. I hope the entocort works quickly.

 

[Mehita]

Entocort is a good start, Tyson's-mom. I didn't mean to say its not. It will help, but the GI will likely want to start a maintenance drug as well since he shouldn't be on corticosteroids for long periods. Usually a steroid and a maintenance drug are started at the same time. The thought is that the steroid gets him into a good place and then the maintenance drug takes over. Unfortunately, many of the maintenance drugs can take weeks to months to work. Has he had any side effects from the steroids yet? I hope it gives him some relief. If you haven't yet, start researching the meds. There will be sticker shock but we've all been there and are here if you have questions.

If he doesn't want to talk much see if he's willing to either log things in a notebook or use a symptom tracking app on his phone or something. The GI will ask! How's your poop? How often do you poop? What's your pain like? Is there blood? And on and on.

Glad to hear you're on the cancellation list. Keep us posted!

 

[Tysons-Mom]

I feel blessed to have found this forum!!! Reading all your posts and advice is such a weight lifter. I felt like we were so in the dark not having seen a specialist yet! We were gone for quite some time today and he informed me he had a hot dog with cheese and lots of kool aid and tonight his stomach pains are terrible, he feels miserable. Tomorrow we are going to start a soft diet and water or flavored waters. His allergies are terrible right now too, lots of sinus drainage so I gave him mucinex, hoping this was ok and not causing stomach pain, of course sinus drainage could cause queasy stomach and pain too. Praying tomorrow is a better day!

 

[Clash]

My son deals with sinus issues from allergies. He takes a couple of daily meds but this last month or so his have been fairly bad. He gets nauseated too if he has a lot of drainage down his throat. Hopefully, if it is sinuses your son will rebound quickly and the entocort will work quickly on his inflammation!

 

[AJC - Australia]

Hi Tysons Mum....the people who live with crohns are themselves Specialists! Sorry to hear Tyson has been diagnosed with crohns.....you sound like my mum in 1994, i was 18. In relation to foods, I would think about the fact that people in China and many developing countries dont get crohns at all. They dont eat dairy, they dont eat bread, wheat and processed foods. They would be the things i would eliminate. Just think 'could he get this on a deserted island'? if the answer is no, it is probably junk food. sugar in fizzy drinks is bad for anyone, especially bad for crohns. dairy, wheat and sugar are the ones you will hear most often......so, getting rid of pizza, pasta, burgers, sandwiches etc is a good step in the right direction. Also worth thinking about is the nature of the crohns, is it in the large bowel, the small bowel or both...and how narrow is the affected area. If he has a stricture (very narrow portion) then the food has difficulty getting through that bit and eating for example an apple with loads of fibre, it will form a ball and be very hard to get through a narrow area. If he is rolling around on the floor sort of pain, then you should consider liquid diet, protein shakes and the like. I hope that helps. There is plenty of research going into crohns, there is hope. good luck.

 

[Ray6007]

Hi, Tyson's mom, sorry that your son has crohn's and i understand how you must feel. I have at 53 just been diagnosed and it is really so difficult to deal with and trying to figure wheat you can and cannot eat is a chanllenge. I noticed that dairy could at times also cause a problem as well as fried foods....teh advice from ChampsMom is excellent and i am also trying foods but am so afraid of the reaction so am staying with what is dafe for now. Good luck

 

[Tysons-Mom]

I am confused about something and wonder if someone can answer my question.... As I said earlier, Tyson has been bleeding with bowel movements for 6 weeks, not a lot of stomach pain during these 6 weeks, he has just been one of those kids with stomach aches off and on his whole life. The bleeding is what alarmed us and sent us to doctor and then scopes and biopsies led us to crohns diagnosis. He has been on entocort for about 10 days and this weekend has been his worse weekend ever, bad stomach pains and bad diarrhea, he wasn't following diet restrictions because surgeon told us we didn't have too, the only thing I cut out was caffeine, so some of the foods he ate Friday, Saturday and yesterday were nachos, cheese, hot dog with cheese, pizza and soft shell taco/no lettuce and lots of root beer and kool aid. Thanks to you all, today we started him on soft foods, water and G2 Gatorade. Would the stomach pain and diarrhea be coming from the foods he has been eating while having the flare up??? Where is the diarrhea coming from??? Or is the entocort causing this? How long do flare ups usually last, because its his first one is it going to be longer and worse?

 

[archaeodani]

Mine has ulcerative colitis, and bled like this for 6+ weeks herself. Crohn's is another form of inflammatory bowel disease, but both react (are triggered) by foods in most everyone that has it.

I think Tyson is being triggered by the foods, not the entocort...

I'm not sure if anyone knows how long this flare will last, but the pattern I've seen is the first one is longer, simply because it's undiagnosed

Everyone is different, will react differently to different foods. I'd really strongly suggest not allowing any of the foods anymore that he's been having, because they really seem to be the reason he's having issues - or more to the point - they are aggravating this for him..

 

[ChampsMom]

If he's in the middle of a flare I believe the food can definitely be irritating him more.

The way our GI explained the diarrhea was it was directly related to the inflammation my son had in his large intestine... Once the "waste" got to that area there was nothing to slow it down, hence it comes right out. My son never dealt with any bleeding though (except when he was constipated).

For me, if he seems worse I would call the doctor (especially because you don't go back for 6 weeks - that still seems crazy to me!)...

We had a similar problem getting into our GI initially. It was my pediatrician that sent us to the Children's Hospital Emergency Room because he wanted him seen sooner by a specialist. When they sent us home saying it was just the flu, my Pediatrician turned around the next day and sent us back again and this time put a call into the GI's office and said he's coming back and someone from your office needs to see him. He was admitted less than 4 days later.

Wish you all the best... It is absolutely miserable to watch our kids in pain... I'm so sorry you're going through this... praying for the best for your son... (((((Hugs)))))

 

[AJC - Australia]

hi tysons mum...good on you for making a change. I would say that pizza, hot dogs, cheese etc would not help the gut to heal. Liquid foods give the gut a bit of a break, bit of a holiday.....the blood and runny poo could be normal for now and for a while, especially if the crohns is in the large bowel. A colonoscopy or a doctor looks in the anus could determine if the crohns is evident in the large bowel. bleeding is quite normal when there is active disease in the large bowel. how long will it last? depends on the severity, the medications being used, etc........what can you do? Changing the diet is one thing you can do, along with knowing as much as you can about the progress of the disease, communicating with doctors, having the various tests, letting tyson take 100% time off with loads of peace and quiet and helping him come to terms with having the problem....many young people go into denial and dont want to talk about it, they even pretend they dont have it....denial, working into fear and anger is a natural progression he must take be it now or in the future. Sugar is not helping Tyson, there would be ten teaspoons in a gatograde? I would try water with a bit of lime or lemon in it.......try tumeric too, if you cook him a meal with brown rice, half a teapsoon of tumeric powder can do nothing but help.......white rice? there is no nutrition in a lot of the modern foods, white rice, white bread, you may as well go and lick the pavement. It sounds to me like he has crohns in the large bowel, near his bum, if that is the case entocort take in the mouth wont do much as it is released in the small intestine.....if you can isolate exactly where the crohns is, that can help in your battle. When i was diagnosed (aged 18) i had it in my mouth, small bowell and large but as i got older it stayed (thank god) in the terminal ilieum (where the large and small bowel join together about ten feet from the anus).....if he has large bowel crohns, the doctors would treat that differently to small bowel.......oh, it is such a tough thing for you tohave to watch and you are doing the right thing by asking and being there for him....i hope he is rested. surgery followed by remicade was the things that made me better....good luck you and everyone....this forum is great...when i was diagnosed there was NOTHING on the internet, no pamphlet we were given - i was just told 'you have crohns disease' and i was going to libraries and things (in the 1990s) looking for information....

 

[CrohnsKidMom]

Hi Tyson's Mom;
When my son was dx'd at his initial flare, but before he started treatment, I feed him as though he were a baby just starting solid foods. A low residue diet basically. Soft cooked veggies, white bread, peeled fruits, plain baked skinless chicken, fish, and lean meats. If he wanted a treat he got arrowroot cookies. He ate pretty healthy before any of this started anyway, but any processed, spicy, greasy, fried, sugary foods, or lactose increased his pain.
Once he started steriod treatment, his pain gradually went away, but I kept him on a low residue diet. The GI THINKS he is in remission now, so I'm in the process of adjusting his diet from low residue to healthy foods with more nutrition.
Unfortunately, I don't think your son is going to find substantial relief until he starts some hefty treatment when he sees the GI. At dx we were given the choice of Prednisone, or a liquid diet through a nasal tube. I don't know that Entocort will give your son all the help he needs, but I don't have any experience with the drug, so I could be wrong. His pain is coming from the inflammation which is caused by the disease, not food. Although the foods you listed would certainly cause his pain and symptoms to increase. I don't have Crohn's, but if I ate that much of the foods you listed I would be sick for days afterward. Seriously. His diet really needs to change to help soothe his gut until you see the GI and get a treatment plan going.
Good luck!

 

[Tysons-Mom]

UPDATE ON TYSON! Called my family doctor this morning and they got us right in, he is the doctor that sent us for the upper and lower gi and the surgeon is the one who put us on entocort and got us appointment with specialist in October. Our family doctor was a GODSEND, he got on the phone immediately and consulted with specialists and we are now going Friday to see the specialists!!! We live in Nebraska, lots of GI specialists for adults in the larger cities but the only pediatric ones are in Omaha which is 2.5 hours away they, so they are a busy group. His medicine was also changed from Entocort to prednisone. Our family doctor said the specialist will probably be prescribing an immune suppressant once we see him Friday. He gave him a week off from school and more if needed and a month off from his little job at the grocery store. Best news was his blood count has gone up to 11.4 . The soft diet has helped the stomach pains A LOT... but diarrhea is still bad, doctor said prenisone should help that in few days. Praying it does. He has lost 14 lbs and he does not have 14 lbs to lose. I cannot express how thankful I am to all of you for helping me understand what is all going on with Tyson, what a scary last couple of weeks! MANY MANY THANKS!!!!

 

[Mehita]

I'm so happy got in sooner! Pred should work fairly quickly. He might be put on something like Prilosec while on the pred. Pred can be pretty tough on the stomach.

Glad to hear the diet change is working too. Hang in there, mom!

 

[ChampsMom]

AWESOME news!!! :dance: So glad he's getting in sooner!!

In the meantime... while you having nothing else to do (choke, choke, choke...) it might be worth your time to read up on 504 plans. There is a thread on here regarding 504 plans and there is a great template on the CCFA website: http://www.ccfa.org/resources/template-section-504-plan.html

As sad as this sounds - it doesn't matter how nice the school is being right now, until you have a plan in place things can change.

I put a 504 in place after my son was diagnosed, as he missed the last part of 7th grade (finished school that Summer on Home & Hospital Instruction through our County). Then he missed half of the first 2 quarters of 8th grade due to missing days here and days there. After that our pediatrician agreed to put him to back on the H&HI Program. It has been the best thing for my son. He still has a 504 plan in place, it just requires for the school to come in and educate him. He is in all honors courses, is on his 2nd year of Spanish, pulls straight A's, and has the ability to participate in any school activity (he plays sports - ice hockey and baseball) - but avoids the daily grind and stresses of being in the classroom. Because of our Church activities and his sport activities (plus he umpires baseball) he has plenty of social activities (which is one of the biggest concerns).

Good luck Friday! I'll be praying for you!

 

[Tesscorm]

Sorry I'm late jumping in now... first, I'm so sorry for what your son is going through and what you're going through as well! :ghug: It's heartbreaking enough when our kids are sick but so much worse when we don't how how to fix it! :ghug: I'm so glad you will be seeing the specialist on Friday! Once your son's treatment gets his crohns under control, he will feel so much better. My son hasn't used pred but many have and most have success with it! But, as you were told, pred is only temporary, the GI will likely recommend an immunosuppressant and/or biologic medication. The pred can reduce the inflammation but to maintain remission, your son will need a maintenance treatment.

You've been given great advice re the diet, I certainly can't add to it. But, in addition to the diet changes, if your son is losing weight, you can try to give him some nutritional shakes. They will provide him with some nutritional and calories. He can have these in addition to his food. I think some (most??) may have lactose; if you're trying to avoid that right now, some of the shakes also come in fruit beverages (still have the nutrition but are more like a juice with no fibre) - http://www.nestlenutritionstore.com...e-nutrition/resource-breeze-nutritional-drink

Hugs... :ghug:

 

[Tysons-Mom]

Just thought I would update everyone on our journey. In the last month Tyson has spent 17 days in the hospital, first visit was 10 days when I took him in he had 103.8 temp and was septic, we were in our small town hospital for 7 days and it wasn't until we were transferred 2 hours away to larger hospital did things finally get turned around and we got answers. Second visit was last week he ended up with partial blockage, but we got through it with iv meds and soft foods/low residue / low fat. He has had 2 remicade treatments, is on 60 mg of prednisone. When we were transferred to larger hospital the GI Specialists did their own colonoscopy and thank goodness they did, turns out the colonoscopy done here local where we live was not very accurate. Tyson has crohns in both small and large and a stricture where small meets large that is about 70% blocked right now due to scarring and inflammation. Drs believe a lot of it is inflammation and they are hoping the Remicade and prednisone will open that stricture up. If not, they will be doing a resection. Tyson is FINALLY feeling better and eating us out of house and home. The 2nd hospital visit when he had the partial blockage was the most painful experience of his and my life... poor kid had 5 morphine shots and it didn't help a bit, finally they gave him a different drug and that took the pain away. We left our house at 4am and drove him to the larger hospital 2 hours away where our specialists are, good thing we left at 4am by 7am he was in excruciating pain, it took them till 10 am to get his pain under control. First doctors thought surgery but after doing another ct scan they were pretty sure lot of his stricture is inflammation. I hope they are right! Tyson missed one month of school and finally went back this week. Today was his first full day, he did well! It took the excruciating pain of the partial blockage for him to start listening to his mom and dad and eating what we feed him and drinking lots of water. He drinks 4 bottles a day and does a miralax drink at night. He has had more trouble with constipation then diarrhea, doctor said this can happen when crohns is in small bowel. I am afraid to say he is doing good because it seems when ever I think he is, things quickly change. We have had some very rough times, with him being 16 his life has been turned upside down, his best friends and brother all left for college the same time he got sick, so he has been feeling all alone over the last few months, it has been heart breaking to see him hurting but we are not going to let this icky disease break us, and we will get through what ever comes our way. We had a crash course over the last month and today for the first time in a long time I feel like the ball is in our court, maybe not for long, but I will take it if even for one day! Thank you to everyone who helped us during those first scary weeks of Tysons diagnosis. It was much appreciated and much needed.

 

[Tysons-Mom]

I forgot to add that when we had our first hospital stay, he spent several days in icu and they told us he tested positive for C.Diff. He has been on Flagyl for 3 weeks, 1 week left on those meds. When GI Specialists did colonoscopy at the large hospital they did not see any signs of C.Diff and do not believe he has it but continue to treat with flagyl , better safe then sorry.

 

[DustyKat]

Thanks for the update Tysons-Mom. :ghug:

My goodness, what a month you have had! Thank goodness you were able to get to the larger hospital and get things sorted and your lad is picking up, bless him. I so hope things going in the right direction for him. Good luck!

No C diff aside, he surely doesn't need that on top of everything else!, Flagyl can be quite useful when flaring as it treats any infection caused by inflammation and also has anti-inflammatory properties.

Thinking of you both. :ghug:

Dusty. xxx

 

[CrohnsKidMom]

So sorry for the difficult time you've been having, but glad you got the help you needed and things are turning around. My son's disease is in his small bowel and he has always suffered from constipation too, never diarrhea. He's on Methotrexate now which loosens his bowels, and in our case, is a benefit. Take care and thanks for the update!