Stomach problems related to Crohn's?

[SallyM]

My 21 year old son has only been diagnosed with Crohn's since March. He initially took steroids, but has weened off of them. He has been on Asacol and it seemed to be working. For the past 3 weeks he can't eat and has been doubled over in pain if he so much as eats a pudding. He can't sleep or get comfortable. The upper endoscopy showed a red raw stomach and duodenum. The doctor said it wasn't related to his Crohn's and prescribed an antacid. Has anyone else with Crohn's experienced these symptoms?

 

[gotumtum]

tagging pasobuff - can you shift this so it gets seen...

 

[gotumtum]

Hi SallyM

I noticed that your thread was in an odd location so I have asked a moderator to shift it so you get some answers

My little Penguin - can you make sure this gets sent over to you guys somewhere?

Cheers

 

[my little penguin]

Sorry to hear about your son.
Typically 5-ASA (asacol) are not enough to be used as monotherapy for crohn's.
Most Gi equate giving 5-ASA for crohn's to giving aspirin for a brain tumor - not going to hurt much but not going to help much either .
Upper crohn's is typically treated with ppi or h2 blockers in addition to normal crohn's maintence meds.
It sounds like your son is not in remission and may need a change in plan.
There is a parents section ( even parents with older kids )
Here

http://www.crohnsforum.com/forumdisplay.php?f=49

Does your sons Gi know he can eat ???
A lot of kids have success with EEN ( formula only no food ) then transition to en ( formula plus food). Peptamen is a semi elemental formula - when used without food it works the same as prednisolone but without the side effects .
DS started with EEN for 9 weeks and switched to en later.
He currently takes humira plus Mtx plus peptamen jr with prebio .

 

[SallyM]

Thank you for your input. I have told him that he isn't eating. He doesn't seem too concerned because he doesn't have a fever and isn't vomiting. The CT scan showed a decrease in the inflammation in his colon and ileum so they think the med is working. I just don't see how his upper abdomen pain and red/raw stomach isn't related to his crohn's disease. If it is related it would make sense that they would need to look at adding another med. They have no idea what has caused the stomach problem.

Sally

 

[kimmidwife]

Sally,
The symptoms you are describing definitely sound Crohn's related. Like MLP said Asacol is not currently reccomended as the best treatment for Crohn's. Asacol is better for ulcerative colitis as it works best for large intestine disease. Unfortunately a lot of old school doctors are not on top of the current reccomendations for Crohn's treatments. You may need to take him for another opinion. You should look for a tertiary care center close to you.

 

[SallyM]

This is what I wondered. I will definitely look into another opinion. I have had to wait 2 days for a return phone call, had attitudes why I am doing the advocating because he is an adult, and they said they never called in a prescription for steroids which they said they would do last week. I just wanted to make sure I wasn't over-reacting.
Thank you all for your support, this is great!!!!

 

[AZMOM]

Sally - What everyone else has said is dead on. Inflammation in the upper GI tract is related to Crohn's. These are some of the problem areas that were identified when my daughter was diagnosed. Don't let up!

J.

 

[SallyM]

So after A's upper endoscopy the doctor prescribed Omeprozole (Prilosec) to reduce the excess acid in his stomach and duodenum. It was strongly emphasized to take 30 minutes before a meal and to then make sure to eat. Today is only his 2nd dose, but the first one did nothing and he feels he can tolerate the pain before he eats, but once the slightest thing goes past his tongue, he is in excruciating pain. I just read the side effects and user comments and they were all bad. It sounds like it is addicting and causes more problems than good. Does anyone have experience with this drug?

 

[Sascot]

It definitely sounds like he's needing a change of Crohns meds. It is a good idea to get a second opinion if his doc doesn't seem concerned. My son was labelled as mild and he was never offered Asacol - don't think they have ever mentioned it as an option. We went onto 6mp which seems to be working - our next step would be methotrexate and then Remicade if needed. I have used omeprazole and it does help "heartburn" a little bit, but I do believe it's not recommended long term. I hope you get some help soon

 

[SallyM]

He doesn't even have heartburn, just really bad pain. I started steps for a referral to a different physician yesterday, so hopefully they will look at new meds soon.

 

[my little penguin]

The Prilosec ( ppi) is a common upper Gi med. It takes a while to work but it does work.
Two days is really not long enough.
Zantac ( h2 blocker) reduces the amount of acid produced by the stomach thus protecting the stomach and esophagus from damage ( cancer) of the excess acid.
Ppi stop the acid production completely so the damage can heal .
DS was on a ppi for a few months and then weaned down to Zantac an h2 blocker .
He now takes the h2 blocker to reduce the amount of mast cells in his system ( mast cells are increased in the gut of kids with Ibd /allergies causing reactions that cause extra abdominal pain etc...)
Glad you are getting a second opinon -
Here is an older guide to give you an idea about treatment plans based on mild moderate etc....
http://www.cincinnatichildrens.org/WorkArea/DownloadAsset.aspx?id=87937
That may help
Remember most of the Internet stories for any drug are the few select unhappy people.
Those that a drug helps are busy with life and not posting about a drug.

 

[SallyM]

Very good point!

 

[malorymug]

My son was on daily prilosec 40mg for three months to ease upper gi discomfort and protection while on antibiotics. It worked well for him and now that he is off of it will use as needed when food bothers his stomach.

 

[mish2575]

So after A's upper endoscopy the doctor prescribed Omeprozole (Prilosec) to reduce the excess acid in his stomach and duodenum. It was strongly emphasized to take 30 minutes before a meal and to then make sure to eat. Today is only his 2nd dose, but the first one did nothing and he feels he can tolerate the pain before he eats, but once the slightest thing goes past his tongue, he is in excruciating pain. I just read the side effects and user comments and they were all bad. It sounds like it is addicting and causes more problems than good. Does anyone have experience with this drug?

do NOT start reading the side effects. They are all scary sounding but each one is rare. We've all had side effects happen, Crohn's is a game of figuring out the right combo for your body and which side effects are manageable compared to the disease.




FYI: I have been on Asacol for 14 years with Crohns. I have been off and on biologics during that time but no other maintenance meds have been prescribed to me.

 

[DanceMom]

My daughter (she's 9) has used both Prilosec and Prevacid and they've been very helpful. She had reflux (which at times was borderline vomiting) and heartburn. They took a few days to begin working but she experienced zero side effects from them. Good luck!

 

[Maya142]

My daughter also had inflammation in her stomach when she was diagnosed. She's used a number of medications - Prevacid, Aciphex, Zantac, Carafate and Famotidine. It did take a while for her to feel better. A heating pad helps (somewhat) when her stomach hurts.
Good luck! Hope you can find a better doctor.

 

[If*]

Some of the meds mentioned to help control acid/reflux etc. can have the possibility to throw off the balance of good gut flora and the question should be asked if they should be taking a good probiotic. Finally there is some research on gut flora being an issue and yes the balance is important ~ my Dr. use to laugh at me for spending all that money.

Oh, and ask about supervised bowel rest ~ all liquid diet as a alternative to steroids since there are many articles that show improvement equal to steroids.

So, check it out.

 

[SallyM]

Thank you all. I admit when I read the Prilosec page comments I panicked a bit, but as "my little Penguin" pointed out the only ones who have time to comment are those who are having the side affects. The ones it has helped are busy with their lives. It helped me a lot to read how it has helped many of your children. Day 2 and he is showing some improvement! Yay!!!!

 

[SallyM]

Oh and "IF" I have been telling him to eat yogurt to help with probiotics. I have never heard of "supervised bowel rest". I will check it out. I like more natural methods if they work!

 

[my little penguin]

EEN is supervised bowel rest - its exclusive enteral nutrition ( formula only no food)-
It works the same as pred in terms of reducing inflammation -it takes 6-8 weeks .
DS drank peptamen jr only for 9 weeks .
It has a better track record for inducing remission in kids than adults .
However it is not maintence meds since once food is introduce it is no longer effective.
DS still takes en ( formula plus food ) he drinks 2-3 peptamen jr a day.
This helps with weight growth and increasing the chances of the biologic longer.
So it can help but just like pred your going to need something else .
It has also been found that EEN tends to only help newly dx patients the first time and not as much the second time .

I will post links to the research section.

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=43002

http://www.hindawi.com/journals/grp/2013/482108/

 

[CrohnsKidMom]

Sorry, I am just reading your post now... and no, I don't think you're overreacting, and yes, you need to be your son's advocate even though he is an adult. He is a young adult and when you are ill it's good to have an advocate no matter your age. I think a second opinion is warranted, and a change in meds may be needed. Regardless if the stomach issue is CD related or not, it has to be addressed and treated. I would wonder if the antiacid they have prescribed would be enough. Glad to hear he is feeling a bit better now. I hope you get the answers you need and get him on the road to recovery.

 

[If*]

Hi there, actually not all Dr. supervised bowel rest is 6-8 weeks. It depends on the patient and what is actually going on. It can be very individual just as this illness is. Children may be very different then the young adult age mentioned. There are several different formulas from over the counter nutrition, EN EEN drinkable and non drinkable items that may need ng tube feeds. There are clear liquids, to non clear liquid supplement nutrition, to soft foods to a slow introduced regular food diet - but not always a 6 - 8 week duration. This is something each individual would need to discuss with their Dr. and possibly additional team of care. There are far too many links to post on this.

Yogurts are good however many contain a lot of sugar that can feed the bad bacteria. There are supplements to look into. Ask your Dr. or a Nutritionist that is educated in Crohn's.

Telling someone to NOT read the side effects is ridiculous and turning a blind eye is a bad choice it is not going to change the potential outcome. The side effects are listed because they have happened even though some may be rare. The information is put out so a patient can weigh the risk, talk with the Dr. and help decide if they are willing to take the risk. The side effects are not listed because they are not a possibility, they are listed because they might be and we as a patient should be aware if a medication induced symptom arises so we can notify the Dr.. There is currently no cure for Crohn's and being a lifelong illness a patient must make decisions that can impact the quality of their existence. Education, not desperation in choice.

:hug:you sound like a wonderful caring, concerned mother which to a child of any age must mean so much.

 

[SallyM]

He is back to being in pain I didn't think about the sugar in the yogurt. I've also given him rice and tapioca pudding, I know they have a lot of sugar. Anxious to see another dr. Also to see a naturopathic physician. You all have given me info to go into the dr. With. If I don't know, I can't ask!

 

[DustyKat]

How is your son doing SallyM?

I agree with all of the above and just have a couple of thoughts to add:

- Prednisone does have the potential to be rough on the stomach so also take that into consideration as a cause of the redness/rawness if he was wasn’t prescribed a PPI when he was taking it.

- Asacol is pretty much useless for Crohn’s and even more so for disease in the ileum as it isn’t the right formulation.

- Ileal disease can cause referred upper abdominal pain.

- Also look to the pancreas as pancreatitis is an EIM (Extra Intestinal Manifestation) of Crohn’s. It isn’t uncommon and will cause severe stomach pain.

Dusty. xxx

 

[mish2575]

How is your son doing SallyM?



- Asacol is pretty much useless for Crohn’s and even more so for disease in the ileum as it isn’t the right formulation.


Dusty. xxx

HI Dusty,
Please be careful not to generalize. I've been on Asacol as a maintenance drug for 14 years for Crohn's. It does work for me, just not as a stand alone. I've used it all these years in conjunction with biologics but it helped enough that when I missed a does i would have extra symptoms.

Every body is different.

 

[SallyM]

Thank you for your inquiries and advice. We asked our fam.dr. For a referral to Portland Gastro. They have several doctors and are more advanced than his present gastroenterologist. The referral went out August 20th so we should hear from them any day. In the mean time, my son is finally feeling better. I feel the Prilosec is a bandaid to cover the symptoms and is only a temporary fix until we get him to the new doctor, but it sure is good to see him up living life again!!!!!! I don't believe his Crohn's is under control yet. I am so appreciative for all the information you all shared. I feel more informed to ask questions when we get in with the new doctor!

Have a Blessed day!

 

[Tesscorm]

I also want to encourage you to look into EEN. It was my son's treatment to push him into clinical remission (no outward symptoms), however, remicade was eventually needed to completely eliminate all inflammation.

But, while EEN wasn't sufficient to maintain biochemical remission (no symptoms nor simmering inflammation), it did help him considerably and there are no side effects! He did six weeks of exclusive (no food) and then continued for an additional two years using it as a supplement (this was his maintenance treatment for this period). Approx. a year ago, he added remicade but continues to drink one to two Boost shakes now as a nutritional supplement. I very much believe the nutrition he gained throughout this time has helped keep him healthy and even controlled his crohns (to a point) without meds. Not suggesting you forego meds as simmering inflammation can eventually cause permanent damage but just saying it's a very worthwhile treatment to allow for bowel rest and, at the same time, offer nutrition.

Good luck with the new doc! :ghug:

And, by the way, I very much advocate for my son!!! I attend every appointment, receive copies of every test, etc. Not only does having you there help ensure that your son receives the best care, it also helps your child learn how to advocate for themselves when they eventually take responsibility for all their own care.

 

[SallyM]

Thank you. I had a nurse ask if there was something wrong with my son that he couldn't talk to her himself. I certainly let him speak, I just am the one to call the dr. And make things happen.