• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Newbie Story

I just turned 30 last month. I haven't had any medical problems for the most part. The last 2 or so years I had some random stomach problems. I had a colonoscopy done last year which showed "unspecified colitis" according to the GI. He put me on Asacol. It seemed to work and I was fine for a while. It recently returned with a vengeance. It was worst than it had ever been. I was trying so hard to figure out what I did wrong. I ended up in the ER because my GI couldn't see me for a month. They ran a bunch of tests. The CT came back showing terminal ileitis, which didn't mean anything to me at the time. They were able to get me to the GI quicker. The GI appt. took 10 minutes. I didn't even get to fire off the many questions I had. (I will get him on the follow up) He put me on Entocort and increased my Asacol. I had a few good days but it still hurts all the time. It is more bearable now though. I have this constant burning sensation across my lower abdominal. That is the best way I can describe it. Do any of you have that? Does the showing of terminal ileitis a definite for Crohn's? I haven't got a straight answer from the GI yet but I understand how it goes.
I love this forum by the way. It is great source of knowledge and entertainment. It is nice to know that you are not alone in the never-ending search for answers about the crazy bodies we live in. I want to thank everyone for the help that you may not know you gave me.
 
Hi and welcome,

More tests may need to be done - especially a colonoscoy - to determine a more specific cause of the ileitis. Crohn's has very specific looking ulcerations on the intestinal walls, that can only be seen with a colonoscopy.

I have Crohn's in my terminal ileum - so far the only place its been found but from what I understand it can be anywhere in the intestinal tract. I also have the burning sensations in my lower right quad( where the terminal ileum is) and up the right side and still am dealing with getting that under control. I have also just started entocort and am feeling somewhat better overall - althought the burning sensation hasn't left yet. I find any gas or bloating issues make the pain worse so I take a GAS-X everyday.

I also am of the subset of Crohn's that deals more with constipation issues than the runs - which is apparently common for those with just the terminal ileum affected, from what I understand anyway.

I, too, have found this forum very helpful and supportive. My sister also had Crohn's but a much milder form which she controls easily with diet modifications - since mine is much worse than hers, she is not that unserstanding, so I find much comfort here.

Hope to hear more from you!

Kelley
 
Hey stealthcns! Welcome to the forum!

OMG COD MW3 FTW!

So, yeah. You didn't do anything wrong. haha. Sometimes, things just go crazy all on their own. Pain is pretty common with Crohns/Colitis, and how everyone experiences it varies. But I can assure you that you aren't alone in your suffering. I don't think ileitis is a definite reason for diagnosis of CD, but seeing as you were diagnosed with UC, it's very possible. Do you have a specific diet you follow? Most people with IBD have problems with certain foods, and they could be the source of your ongoing pain.

Glad to have you here :D
 
Hi and welcome,

More tests may need to be done - especially a colonoscoy - to determine a more specific cause of the ileitis. Crohn's has very specific looking ulcerations on the intestinal walls, that can only be seen with a colonoscopy.

I have Crohn's in my terminal ileum - so far the only place its been found but from what I understand it can be anywhere in the intestinal tract. I also have the burning sensations in my lower right quad( where the terminal ileum is) and up the right side and still am dealing with getting that under control. I have also just started entocort and am feeling somewhat better overall - althought the burning sensation hasn't left yet. I find any gas or bloating issues make the pain worse so I take a GAS-X everyday.

I also am of the subset of Crohn's that deals more with constipation issues than the runs - which is apparently common for those with just the terminal ileum affected, from what I understand anyway.

I, too, have found this forum very helpful and supportive. My sister also had Crohn's but a much milder form which she controls easily with diet modifications - since mine is much worse than hers, she is not that unserstanding, so I find much comfort here.

Hope to hear more from you!

Kelley
Thanks for the welcome. The burning sensation for me is mostly on the right side as well. I am hoping it will stop eventually. It has only been there for a few months but it seems like a lifetime.
 
Hey stealthcns! Welcome to the forum!

OMG COD MW3 FTW!

So, yeah. You didn't do anything wrong. haha. Sometimes, things just go crazy all on their own. Pain is pretty common with Crohns/Colitis, and how everyone experiences it varies. But I can assure you that you aren't alone in your suffering. I don't think ileitis is a definite reason for diagnosis of CD, but seeing as you were diagnosed with UC, it's very possible. Do you have a specific diet you follow? Most people with IBD have problems with certain foods, and they could be the source of your ongoing pain.

Glad to have you here :D
Thanks, what not a COD fan?? lol

I always eat pretty bland for the most part. I have been more cautious since this all started. I bought a book about the SCD diet, which is pretty interesting. I been sticking with the following for now though.
chicken, fish, rice, potatoes, apples/applesauce, some random vegetables
 
HI stealthcns,welcome to forum. i have had crohn's for 21 years now and burning sensation you are taking about is also in my right had side and around the belly area just or below you belly buttom it's inflammation of the intestine. usually if it's in the right hand side it's usually crohn's. but , it has to be determined by a colonoscopy. mine flared up a month ago and i am still dealing with pain in my right hand side. did they give you anything for the pain? i am on pain killers for my pain. i am glad you join our large family and there is a great wealth of knowledge here. People like you are going through the same ordeal. Keep asking questions and you will get answers, people here will respond. I hope your pain will ease up soon. best wishes

scott
 
I too have painkillers for my issues. Be sure to speak up and let them know exactly how bad you are suffering. Being stoic just wears me down faster.
 
What on earth do those abbreviations mean - COD MW3 FTW!!
Call of Duty Modern Warfare 3 For the Win... YES. I am totally a fan!

Do you cook all your veggies? Veggies are fruits can be harder on us folks, because of the fiber and acids and such... Cooking them makes them blander, and seems to make them more tolerable. Or, you could puree everything into a mush. lololol

*pew pew* - the raygun.
 
No pain meds at the moment. I will see my GI again next week. The veggies, I kind of stir fry them with potatoes. I am no chef though. lol
 
HI stealthcns,welcome to forum. i have had crohn's for 21 years now and burning sensation you are taking about is also in my right had side and around the belly area just or below you belly buttom it's inflammation of the intestine. usually if it's in the right hand side it's usually crohn's. but , it has to be determined by a colonoscopy. mine flared up a month ago and i am still dealing with pain in my right hand side. did they give you anything for the pain? i am on pain killers for my pain. i am glad you join our large family and there is a great wealth of knowledge here. People like you are going through the same ordeal. Keep asking questions and you will get answers, people here will respond. I hope your pain will ease up soon. best wishes

scott
Thanks, that seems exactly how I am feeling. It covers my entire lower abdominal area when its mad but the right side always has that burning pain.
 
No pain meds at the moment. I will see my GI again next week. The veggies, I kind of stir fry them with potatoes. I am no chef though. lol
Perhaps try boiling them? It takes away a lot of the nutrients, but it doesn't involve oil, and completely cooks them. I dunno. Whatever makes you feel best. Experiment! But, don't experiment too wildly. No drinking gasoline or whatever.
 
OK thanks for the info on the abreviations!!

If you don't have pain meds - try a hot water bottle or a heating pad on your abdomen as you lie down. Before I had changed meds, I was sleeping with a heating pad on my abdomen to try and help with the pain and that worked some. I also could only sleep on my back so my abdomen wasn't pulling as it does when I am on my side.

When I can't eat anything else mashed potatoes, boost or ensure, and oatmeal are my go to foods.
 
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