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Crohn's Disease Forum » Your Story » Anyone with inflammation in terminal ileum?


 
10-13-2014, 01:57 PM   #1
Giovanni's Mom
 
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Anyone with inflammation in terminal ileum?

Hi All:

My Son Giovanni was diagnosed with Crohn's Disease in 2011. He had lost a lot of weight in a short period of time, low grade fever, fatigue, bellyache, and sudden urgency to go to the bathroom. I had to find out what it was and after doing a barium meal follow through and confirmation through a colonoscopy, he was diagnosed with Crohn's.

The diseased area of his intestine is the terminal ileum. He has not had watery stools in a very long time but he complains of aches in his tummy. I am so distressed, he has gotten so thin and I honestly dont know what to do.

He is currently taking Asacol, calcort, flagyl, iron and OMEGA 3, 6 9.

Can you share with me?
10-13-2014, 04:38 PM   #2
nogutsnoglory
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I had to have mine resected due to scar tissue. I hope you can find a drug to quell the inflamed tissue. Has your GI discussed a biologic or immune suppressant? Sadly Asacol is very mild and mainly works on the colon. Flagyl also isn't helping stop the inflammation and generally is best used during an infection.
10-13-2014, 05:14 PM   #3
worriedboy
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If Asacol is doing nothing it's time to go back to your doctor. He might want to step up to a stronger medication.
For a short term relief did your son get a taper of steroids ?
10-13-2014, 05:21 PM   #4
Jmrogers4
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My son has/had inflammation at the TI as well as my husband and Asacol/Pentasa were not strong enough to knock out the inflammation. For my husband Imuran (Azathioprine) has been enough for the past 13 years to maintain remission but for my son it wasn't strong enough and we had to move on to remicade which has been a wonder drug for him the past 10 months.
For my son it was simmering inflammation happening, he did not have diarrhea but the inflammation caused lack of growth and extremely low weight. He did not have an appetite and what he did eat was not easily absorbed due to inflammation leading to further weight loss.
Sounds like maybe a change in medication is in order.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-14-2014, 06:18 AM   #5
DEmberton
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I did. I was recommended for surgery as soon as I was diagnosed, so I can't comment on meds because I've never had any. I had some but not much diarrhea and never had any blood, but it was the weight loss more than anything that made me seek help.

Has he had his B12 levels checked?
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10-14-2014, 09:04 AM   #6
Clash
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My son had inflammation in the TI at the ileocecal valve. He was initially on remicade then remicade plus methotrexate. He recently had a resection.

If he is still experiencing symptoms then a med adjustment or change is probably warranted. Since symptoms generally indicate inflammation then testing such as lab work and fecal calprotectin stool test would be in order.
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C age 19
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10-14-2014, 10:40 AM   #7
Giovanni's Mom
 
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Hi All:

Thanks for your response. He does blood work almost every 2-3 months and at some point in time, his B12 results were above normal (is anything wrong with that?), but the test he did last month says its within range.

He is almost 15 years old and only 5ft tall and he really wants to grow. He is really skinny too...I am honestly sick and tired of all the meds and the side effects that comes with them. Because of the steroid, he is being treated for stomach ulcers. The GI is now tapering him off the steriod too.

My Co-worker introduced me to her nutritionist yesterday, and after speaking with the gentleman, I am now super excited. He wants me to try tumeric and to also give him some aloe blended in grapefruit juice in the nights before bed. Have you guys had anything natural work for you?
10-14-2014, 10:55 AM   #8
Clash
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Aloe can irritate the GI tract. There are some members that supplement with turmeric. The main issue with kiddos and CD is that the disease tends to be more aggressive and progressive than adult disease. Simmering inflammation can lead to irreparable damage.
10-14-2014, 11:02 AM   #9
Giovanni's Mom
 
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My son has/had inflammation at the TI as well as my husband and Asacol/Pentasa were not strong enough to knock out the inflammation. For my husband Imuran (Azathioprine) has been enough for the past 13 years to maintain remission but for my son it wasn't strong enough and we had to move on to remicade which has been a wonder drug for him the past 10 months.
For my son it was simmering inflammation happening, he did not have diarrhea but the inflammation caused lack of growth and extremely low weight. He did not have an appetite and what he did eat was not easily absorbed due to inflammation leading to further weight loss.
Sounds like maybe a change in medication is in order.
Hi Jacqui:

How tall is Jack?....it seems like my son has so much in common with him...they may have had the illness for about the same time.
10-14-2014, 11:06 AM   #10
Giovanni's Mom
 
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Aloe can irritate the GI tract. There are some members that supplement with turmeric. The main issue with kiddos and CD is that the disease tends to be more aggressive and progressive than adult disease. Simmering inflammation can lead to irreparable damage.
Oh, I see. I live in Jamaica. Before Gio was diagnosed, I knew nothing about Crohn's. Its a rare disease here.

I have been thinking about remicade too. Would he need to be totally off the steroid to be infused with remicade?
10-14-2014, 11:16 AM   #11
Clash
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No, he would not have to be off the steroids to start remicade. Steroids are usually used as a rescue med to dampen inflammation while the maintenance meds like remicade reach full therapeutic levels.

Also, for some citrus juices can be irritating but that can be very individual.

I'm going to that my little penguin as she has a ton of info.
10-14-2014, 11:17 AM   #12
Jmrogers4
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Hi All:

He is almost 15 years old and only 5ft tall and he really wants to grow. He is really skinny too...I am honestly sick and tired of all the meds and the side effects that comes with them.
Definitely been there, my 15 year old was 5'1" and 89 pounds in January and he started at 4'11" and 75 pounds when he was diagnosed at 10 years old. It wasn't until we had the disease fully under control that he finally grew. He is currently 5'5" and 113 pounds and growing steadily.

For us Remicade has been the only thing so far that has allowed this to happen. We've tried the diets, we had already tried a lot of the "natural" remedies with my husband who was diagnosed over 20 years ago, haven't found one that works yet.

There are some studies going on now for SSI (site specific immodulator) and Fecal transplants.

After many diets, visits to the endocrinologist to try and figure out why he wasn't growing it really wasn't until we got the disease fully under control that we had any luck. I fought remicade for a long time as many others on here can tell you. All I can give you is our experience and as of this moment I'm happy my son is growing, he's happy and enjoying the life of a teenage boy and the size difference is not so noticeable any more and becoming less so each day. Most days he doesn't even think about his Crohn's because it's not consuming his life, he feels good and eats what he wants for the most part (no seeds, nuts, popcorn) generally healthy but he is a teenage boy and now eats like one, he can finish off an entire cheese pizza by himself where before we were lucky if he ate a 1/2 of a slice.

Last year for homecoming he was way shorter then his date and was on a liquid diet and could not even have dinner with his date, he was tired and didn't even make it through the dance. This year he is taller then that same girl and I had to give him a curfew to be home by. It's so hard choosing and deciding for someone you would give your life for as you just want to make the right decision.

I hope you find something that works for him and gets him back to a fantastic quality of life where he is growing and Crohn's is just a very small part of his life and not something that he is dealing with on a daily basis.
10-14-2014, 11:22 AM   #13
Giovanni's Mom
 
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WOW....Jacqui. This sounds so good.
10-14-2014, 12:53 PM   #14
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Definitely been there, my 15 year old was 5'1" and 89 pounds in January and he started at 4'11" and 75 pounds when he was diagnosed at 10 years old. It wasn't until we had the disease fully under control that he finally grew. He is currently 5'5" and 113 pounds and growing steadily.
How long after Remicade have you noticed improvements?
10-14-2014, 01:15 PM   #15
Jmrogers4
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The weight happened right away about 1/2 through his first infusion he told me he was starving and ate a huge meal right after. The color came back into his face and he was just more energetic.
Some people it has taken longer to see results. We had to mess with timing and dosage as we did not make it our first 8 week stretch without symptoms happening, for us it's usually week 7 we start to see symptoms creep back in all though nothing nearly what it was just a decrease in appetite all though he still eats, some fatigue and eczema shows back up.
We increased dose from 250ml to 400ml after the loading doses and decreased time to 6 weeks which we did for several infusions and had no issues and no symptoms when we tried again for 8 weeks at 400ml we again saw symptoms at about 7 weeks. We have upped the dose for his next infusion on the 29th to 500ml and we are in week 6 and symptoms are starting to creep in so I'm hoping 500 every 8 weeks will be our magic if not we go back to every 6 weeks and we know that has worked.
Height didn't really start to take off until about the 4th-5th month in but hasn't really stopped since then. The endocrinologist who we had a follow up with last month told us his growth velocity is way above the curve for his age so he is growing way faster then any of his peers currently but then he has a bit of catch up growth to do.
He had a bone age scan done last January which put his bone age at about 2 years behind his age so still some catch up to do but we are getting there and neither one of us is stressing and worrying about it anymore.
He's a good inch taller than I am now and likes to puff out his chest and stand next to me, he was jumping around the doctors office when he had actual verification that he was taller than me. 1 milestone down in a teenage boys life - the day they are taller than their mother. He also no longer gets handed the kid's menu when we go out to eat which just a year ago happened nearly every time we went out to eat.

Adorable picture by the way
10-14-2014, 01:20 PM   #16
Giovanni's Mom
 
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I had to have mine resected due to scar tissue. I hope you can find a drug to quell the inflamed tissue. Has your GI discussed a biologic or immune suppressant? Sadly Asacol is very mild and mainly works on the colon. Flagyl also isn't helping stop the inflammation and generally is best used during an infection.
How did you know that your tissue was scared?
10-14-2014, 01:40 PM   #17
Giovanni's Mom
 
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Jacqui:

Your Son had Arthritis too? My Son has that in addition to vision issues at times.
10-14-2014, 01:56 PM   #18
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Giovanni's Mom, I have Crohn's of the terminal ileum. I will eventually need a resection due to the scar tissue that built up due to being undiagnosed/untreated for multiple years/decades. I had simmering inflammation which left lots of scar tissue. It was found when my GI had me go in for an MR Enterography. He found that there was significant thickening of the walls of about 25 cm of my ileum. The doctor is currently unsure of how much of the thickening is due to active inflammation and how much is due to scar tissue at the moment, but has mentioned that I may need to have a resection sometime soon if it is all related to scar tissue.
10-14-2014, 01:59 PM   #19
Jmrogers4
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Crohn's can affect joints and the eyes as well especially if inflammation is not under control. The joint pains have gone away with the rest of the symptoms.
No eye issues but we do see an Opthalmologist for just this reason, he consults with Jack's GI and sends him all results.
Many of us have several specialists or children see to deal with the many other issues that go along with Crohn's - opthalmologist, pediatric endocrinologist, pediatric rhuemologist.

To give you my 2 cents about scar tissue, it's hard to tell if it scar tissue or inflammation without a scope and in our case we had an MRE in December which showed narrowing at TI and we were not sure if it was scar tissue or inflammation or both. Inflammation will go away with correct treatment (for us that was remicade) but scar tissue does not go away. So if you change treatment and all signs of inflammation are gone (normal labs, fecal calprotectin) but he is still having pain/issues it's possible that you are dealing with scar tissue. Does that make sense?
10-14-2014, 02:25 PM   #20
Giovanni's Mom
 
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Crohn's can affect joints and the eyes as well especially if inflammation is not under control. The joint pains have gone away with the rest of the symptoms.
No eye issues but we do see an Opthalmologist for just this reason, he consults with Jack's GI and sends him all results.
Many of us have several specialists or children see to deal with the many other issues that go along with Crohn's - opthalmologist, pediatric endocrinologist, pediatric rhuemologist.

To give you my 2 cents about scar tissue, it's hard to tell if it scar tissue or inflammation without a scope and in our case we had an MRE in December which showed narrowing at TI and we were not sure if it was scar tissue or inflammation or both. Inflammation will go away with correct treatment (for us that was remicade) but scar tissue does not go away. So if you change treatment and all signs of inflammation are gone (normal labs, fecal calprotectin) but he is still having pain/issues it's possible that you are dealing with scar tissue. Does that make sense?
You do make alot of sense.
10-14-2014, 03:10 PM   #21
Giovanni's Mom
 
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Giovanni's Mom, I have Crohn's of the terminal ileum. I will eventually need a resection due to the scar tissue that built up due to being undiagnosed/untreated for multiple years/decades. I had simmering inflammation which left lots of scar tissue. It was found when my GI had me go in for an MR Enterography. He found that there was significant thickening of the walls of about 25 cm of my ileum. The doctor is currently unsure of how much of the thickening is due to active inflammation and how much is due to scar tissue at the moment, but has mentioned that I may need to have a resection sometime soon if it is all related to scar tissue.
I am so sorry. As I have told my Son, I can only imagine his pain.
10-14-2014, 03:21 PM   #22
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With treatment, it gets better/manageable. I'm currently on Entocort until this Friday when I go see my GI doc. We are going to hash out what the best medication for treatment for me will be, and I will start weening off of the steroids. I wish your son the best.
10-14-2014, 03:23 PM   #23
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Thanks Karma. I wish you the very best too.
10-14-2014, 03:44 PM   #24
DEmberton
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Giovanni's Mom, I have Crohn's of the terminal ileum. I will eventually need a resection due to the scar tissue that built up due to being undiagnosed/untreated for multiple years/decades. I had simmering inflammation which left lots of scar tissue. It was found when my GI had me go in for an MR Enterography. He found that there was significant thickening of the walls of about 25 cm of my ileum. The doctor is currently unsure of how much of the thickening is due to active inflammation and how much is due to scar tissue at the moment, but has mentioned that I may need to have a resection sometime soon if it is all related to scar tissue.
Pretty much the same as me. I think I probably had this for 20 years but was initially told IBS. GI said they could try to treat it with drugs, but he thought it was unlikely to work at that stage so recommended surgery. I've been so much better since the resection (b12 deficiency aside).

I hate to think how tough so this must be for kids (and parents of kids). I hope you get on top of it.
10-16-2014, 11:46 PM   #25
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ask your doctor if you son can supplement with Enteral liquid diet. Its often used to help nutrition or even replace steroids in CD when used as sole source of food intake. Tumeric can be a great anti-inflammatory, but Aloes is controversial and at own risks... Indroducing one supplement at a time and observation is best than trying many new things at the same time imo. Which form of tumeric are you going to use? Fresh tumeric root in food? or tumeric extract in pills?
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''UC-like Crohn's'' since 2001:
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pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-25-2014, 10:20 PM   #26
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Which form of tumeric are you going to use? Fresh tumeric root in food? or tumeric extract in pills?
He mixed a powder and gave me in a bottle to refrigerate and give him a little everyday.
10-26-2014, 01:57 AM   #27
xeridea
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Giovanni's mom, you mentioned grapefruit juice. From what I recall, don't give this if on prednisone or other steroids.
02-05-2015, 01:46 PM   #28
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Hi Guys:

Giovanni is now on Humira. He got the first dose on January 26. I feel so good for him because he is eating ALOT and running and skipping and and putting on weight. He has more life and energy now...I just pray that he continues to feel great and goes into remission.
02-05-2015, 02:00 PM   #29
Jmrogers4
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That's fantastic hope it continues forever!
02-05-2015, 02:15 PM   #30
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That's fantastic hope it continues forever!
Jacqui:
You inspired me. You told me how well Jack was doing....I told the GI we wanted to go Remicade and he sugested Humira. Gio is very happy and I am happy.
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