Terminal ileitis - waiting for biopsy results

[mandycraze]

Hello! This is my 1st post so let me say thank-you for reading!

Anyhow, yesterday I had my 1st colonoscopy. I am 31 yrs old with a family history (Mother and her cousin) of Crohn's. Dr said large bowel looked great, nice and healthy! He said there was inflammation of the small intestine and he did a biopsy. On my paperwork, the post-op diagnosis read terminal ileitis.

So of course, I google as soon as I can and it seems this IS a form of Crohn's, but may also be linked to other things.

Basically, I am looking for anyone who has terminal ileitis and what your outcomes were - or really, ANY advice at all! They said about a week for the biopsy results and I am over here driving myself nutty just trying to sort it all out.

Again, thanks so much!

 

[DEmberton]

It's the most common place to find Crohn's. I had surgery shortly after being diagnosed but that was after 20 years, so what happens very much depends on how bad it is. There's a steroid called Budesonide or Entocort that targets exactly that area, so you may be given that plus something longer term to maintain remission (if it is Crohn's).

The other thing is if you have inflammation in the Terminal Ileum you need to have B12 injections.

Good luck.

 

[ronroush7]

Hoping the best for you. Welcome to the group.

 

[mandycraze]

It's the most common place to find Crohn's. I had surgery shortly after being diagnosed but that was after 20 years, so what happens very much depends on how bad it is. There's a steroid called Budesonide or Entocort that targets exactly that area, so you may be given that plus something longer term to maintain remission (if it is Crohn's).

The other thing is if you have inflammation in the Terminal Ileum you need to have B12 injections.

Good luck.

Thanks so much! With my last pregnancy (delivered in May 2015) my B12 was ridiculously low. I was given daily B12 injections for 10 days, then weekly injections for a month, and then on to monthly injections which ended when I delivered. So I am quite familiar with that aspect. With any luck - if its possible that is - maybe I just have low B12 again. ...Unless inflammation of the TI is responsible for the low B12.

So many possibilities I suppose.

 

[DEmberton]

TI is where B12 is absorbed. Chances are you had inflammation there before you noticed any symptoms and that's why your B12 was low before.

Unfortunately doctors aren't always so good at looking for the cause.

 

[fuzzy butterfly]

Hi and welcome..sorry you need to be here tho. My crohns is in the terminal ileum also. I have to have b12injections every few months. As you know they aren't to bad.
Hope things settle down soon and the results result in you get the right meds to help you. Best wishes. Mandy(aka fuzzy butterfly). Yep im a Mandy too ☺

 

[ronroush7]

I need b12 once a month

 

[mandycraze]

Hi and welcome..sorry you need to be here tho. My crohns is in the terminal ileum also. I have to have b12injections every few months. As you know they aren't to bad.
Hope things settle down soon and the results result in you get the right meds to help you. Best wishes. Mandy(aka fuzzy butterfly). Yep im a Mandy too ☺

Thanks for the reply and the welcome! I have to say, you have a fabulous name! Ha-ha.
But anyway, like you said, the b12 injections are not bad at all! I also had gestational diabetes - so when I was taking the daily b12 injections, I was administering a total of 5 injections, per day! I think I can handle one every few months, or even once a month lol.

 

[mandycraze]

I need b12 once a month

Are you able to self administer or do you go in office? I'm hoping if it comes to that, considering my history, my Dr will allow me to do it myself. I already have 2 regular appts a month - having two young children at home and sitters that our 3 yr old will actually stay with being few and far between, I do not want to add to my appt lists!

 

[ronroush7]

My coordination is not well enough to give myself a shot but you could probably give yourself a shot but I am not sure of that.

 

[fuzzy butterfly]

Hi, I'm not sure if you can do them yourself, I get mine at the surgery. Do ask your doctor though as it might well be possible. Hugs

 

[JaimeM]

I also have mine in the terminal ileum. I was diagnosed in 2008. Had done very well until after I had my baby then things have been a bit of a roller coaster since

 

[mandycraze]

So, I called the office to see if my results were in yet - and the receptionist just said the dr wants me to come in for a follow up.

Not sure what to make of that. Initially they said if they came back positive for anything they would call and negative they would send a letter out letting me know....

So now I sit and wait till my appt, which is Wednesday. Although, I have my opinions of what it means.

 

[nini_mini]

welcome mandycraze! I had mine in the ti also, back in 2012 tried many many meds, for a year and a half until it just got real bad, had a small bowel follow through and the radiologist said my ti looked like an apple core and that a fistula formed because that entire section was closed off. I waited as long as i could but nov. 2013 i ended up getting open surgery to take it out and the rest of the mess in there and half of my ascending colon and appendix. your not alone!

 

[mandycraze]

welcome mandycraze! I had mine in the ti also, back in 2012 tried many many meds, for a year and a half until it just got real bad, had a small bowel follow through and the radiologist said my ti looked like an apple core and that a fistula formed because that entire section was closed off. I waited as long as i could but nov. 2013 i ended up getting open surgery to take it out and the rest of the mess in there and half of my ascending colon and appendix. your not alone!

It certainly is nice to find others who can relate! I know my husband (while he does his best to fake it) is over me obsessing; especially without the absolute confirmation.

When you were diagnosed, what initial symptoms did you present? I don't find I have many typical symptoms but as mentioned, have family history.

Have you improved since surgery? I would imagine that also took a mental toll along with the physical one.

 

[nini_mini]

It certainly is nice to find others who can relate! I know my husband (while he does his best to fake it) is over me obsessing; especially without the absolute confirmation.

When you were diagnosed, what initial symptoms did you present? I don't find I have many typical symptoms but as mentioned, have family history.

Have you improved since surgery? I would imagine that also took a mental toll along with the physical one.

Yes, it is! It's refreshing. And oh man, my best friend and mom were like that when I first got sick, then after Dx they just got used to it overtime lol oh well

Initial symptoms hmmmm, lots of pressure in my abdomen which after ultrasound was trapped gas that dilated my bowel, was painful, bad heartburn and reflux, stomach cramps, a sharp pain in my lower right side.
The week before I went to the Er I was having blood in my stool and started to get urgency but I brushed it off. The following week I'd say midweek after dinner one night, my dad and I were outside on the porch and when I went to get up this extremely sharp burning pain came on in my lower right side, I doubled over, let out a yell, tried to stand up again only to be brought to my knees from the pain. My rents brought me to urgent care the lady took an X-ray, and looked at my belly, barely put pressure on it and I freaked out. She said go to the Er immediately I'll call them to tell em your coming. After being admitted I got a scope and the dr said my ti was so swollen you probably couldn't fit a pencil through it and had to stop for fear of perforation.
It was painful beyond belief.

After surgery I was good for 6 weeks and then I flared full force. And I've had a few good months here and there but no not really, surgery didn't slow it down at all. Mentally it's very frustrating and taxing having to cancel plans a lot and short notice but there's nothing I can do about it. Physically well, let just say I'm happy I have pain killers right now.

 

[nini_mini]

Should also mention that the Prometheus test was post. For crohn's and they found a marker for it in my genetics. But no one in my family on either side has it or uc. I'm the lucky one -__- that gets to have it lol