Crohns in small intestine? (clean test so far) HELP!

[Uninstall]

Ok so my story started a year ago when out of no where I started vomiting all day. I didnt feel sick or anything so I thought I was pregnant! About a week later I had the WORST pain in my left side. I almost went to the er but instead like a dumb ass I took a pain pill and went to work. I went to urgent care the next day cause I was still hurting and couldnt eat. They took an xray and it showed stool stuck in my colon. They gave me some meds and that was it. Every once in while I would need to take a laxative to go but not always.

At the beginning of this year laxatives stopped working (I have constipation). I lost 10 pounds (my weight got down to 109 and I'm pretty tall so that wasnt good). I was feeling really bad so my doc ordered a ct scan and referred me to a gastro doc. The ct scan (without contrast)showed I had stool in me still.

The first gastro doc was a dick. Didnt know any of my chart and after pressing on my stomach diagnosed me with SLOWING BOWELS! I'm 23 not 83, my bowels are NOT slowing down. So I dumped him

Second gastro doc said my symptoms sounded like crohns so he ordered a colonoscopy and upper GI. They found that I have diverticulosis (small pouches) in my colon. They also said that my small intestine was a bit inflamed but that my biopsy came back clean.

So the gastro gave me Linzess 290 and a probiotic to help me go. This helped me go for about two weeks before it too started to not work and I didnt go for a week before I took some dulcolax. Now I'm taking the Linzess, Florastor (2x a day) and Xifaxan (2x a day) If this doesnt work then I will have to take a pill cam. The dr said that if they find ulcers in my small intestine (which is where my stool is getting stuck) that I have crohns.



Has anybody been diagnosed with Crohns in their small intestine and had clean test until a pill cam? Diverticulosis isn't suppose to be as painful as this has been and the fact that all medicine stops working for me makes me think there HAS to be more but all my test are clean! I dont understand.

 

[Les62]

Hi,
I am not very knowledgable regarding Crohn's etc but my story has been very similar to yours...ie constipation and pain and have also been told that my colon is not working. I am currently on 3 different laxatives, several times a day which only just keeps things going.

I also was told that CT scan showed inflammation in terminal ileum and the first colonoscopy showed ulcers there but biopsies came back as non-specific inflammation. My gastro however was still suspected Crohn's.

Meanwhile, I had been admitted to hospital twice and they thought I had a bowel obstruction or perforation. However the main problem was impaction and had to had Klean Prep and several enemas before they got my bowel cleared out. After that, they repeated the colonoscopy but doc couldn't get into terminal ileum this time and I too have now to get a wireless capsule endoscopy(?pill cam) done to check ulcers area and further up the ileum.

I think if it comes back clear they are talking about me going on medication like you mention - I think it was the Linzess you mention. I would be interested in how effective you think it is. Docs now think my bowel is not working possibly related to bad infection (abscess on inner thigh) last year. I don't quite see the relation but things also complicated with possible Crohn's too.

Would be interested in the outcome of your pillcam too.
Les

 

[Uninstall]

Hi,
I am not very knowledgable regarding Crohn's etc but my story has been very similar to yours...ie constipation and pain and have also been told that my colon is not working. I am currently on 3 different laxatives, several times a day which only just keeps things going.

I also was told that CT scan showed inflammation in terminal ileum and the first colonoscopy showed ulcers there but biopsies came back as non-specific inflammation. My gastro however was still suspected Crohn's.

Meanwhile, I had been admitted to hospital twice and they thought I had a bowel obstruction or perforation. However the main problem was impaction and had to had Klean Prep and several enemas before they got my bowel cleared out. After that, they repeated the colonoscopy but doc couldn't get into terminal ileum this time and I too have now to get a wireless capsule endoscopy(?pill cam) done to check ulcers area and further up the ileum.

I think if it comes back clear they are talking about me going on medication like you mention - I think it was the Linzess you mention. I would be interested in how effective you think it is. Docs now think my bowel is not working possibly related to bad infection (abscess on inner thigh) last year. I don't quite see the relation but things also complicated with possible Crohn's too.

Would be interested in the outcome of your pillcam too.
Les

When the Linzess was working for me it was causing me cramps buuuut I was going. Youre suppose to wait 4 weeks before you feel better from the meds. It also gives you very loud bowel sounds, least for me it did. Its suppose to be a good drug to help with the pain so I hear

 

[bozzylozzy]

Hi uninstall and welcome to the forum!

I am glad they are going to do a pill cam next.. when are you due to have it?
It is fustrating when tests show visible signs of something but the biopsies are clean. Either way - at least visible signs proves the pain you are in to be real. Your new doctor seems like a good'un.

Please keep us updated

 

[Uninstall]

Hi uninstall and welcome to the forum!

I am glad they are going to do a pill cam next.. when are you due to have it?
It is fustrating when tests show visible signs of something but the biopsies are clean. Either way - at least visible signs proves the pain you are in to be real. Your new doctor seems like a good'un.

Please keep us updated

Sent from my SGH-T999 using Tapatalk 2



I have the test in 3 weeks if the six pills I'm taking a day don't do anything. So far I'm not impressed lol but I know it takes time and that meds have to make you feel like crap before they do anything so I'm trying to keep my chin up

The right side of my body sounds hollow when you tap it, the left is just a thud. Least that shows that its not in my head

 

[Uninstall]

Well waiting for my insurance to decided if a pillcam test is medically necessary. Lost some more weight so my doc put the order on expedite(?) so I'm pretty sure I'll get approved but I'm a little worried. This might be the test that I need so the chance I might not get it sucks.

2

 

[Ruche]

Hi Uninstall,

Did you ever find out what was wrong?

Hope you're doing well

,Ruché

 

[vocalartillery]

Ok so my story started a year ago when out of no where I started vomiting all day. I didnt feel sick or anything so I thought I was pregnant! About a week later I had the WORST pain in my left side. I almost went to the er but instead like a dumb ass I took a pain pill and went to work. I went to urgent care the next day cause I was still hurting and couldnt eat. They took an xray and it showed stool stuck in my colon. They gave me some meds and that was it. Every once in while I would need to take a laxative to go but not always.

At the beginning of this year laxatives stopped working (I have constipation). I lost 10 pounds (my weight got down to 109 and I'm pretty tall so that wasnt good). I was feeling really bad so my doc ordered a ct scan and referred me to a gastro doc. The ct scan (without contrast)showed I had stool in me still.

The first gastro doc was a dick. Didnt know any of my chart and after pressing on my stomach diagnosed me with SLOWING BOWELS! I'm 23 not 83, my bowels are NOT slowing down. So I dumped him

Second gastro doc said my symptoms sounded like crohns so he ordered a colonoscopy and upper GI. They found that I have diverticulosis (small pouches) in my colon. They also said that my small intestine was a bit inflamed but that my biopsy came back clean.

So the gastro gave me Linzess 290 and a probiotic to help me go. This helped me go for about two weeks before it too started to not work and I didnt go for a week before I took some dulcolax. Now I'm taking the Linzess, Florastor (2x a day) and Xifaxan (2x a day) If this doesnt work then I will have to take a pill cam. The dr said that if they find ulcers in my small intestine (which is where my stool is getting stuck) that I have crohns.



Has anybody been diagnosed with Crohns in their small intestine and had clean test until a pill cam? Diverticulosis isn't suppose to be as painful as this has been and the fact that all medicine stops working for me makes me think there HAS to be more but all my test are clean! I dont understand.

Yes. Mine...if the blasted pill test would stop getting stuck...is in my small intestine.