Do I have jejunoileitis?

[Becky24]

Hey,

I have had crohns in my colon ( which is now gone and I have an ileostomy) , it's also in my rectal stump and my mouth but I'm starting to worry that it's now in the upper part of my small bowel.

I've recently been discharged from having emergent surgery 7 weeks ago ( my SB was twisted under my stoma) and since then things haven't been right, even though I felt great before.

I have upper tummy pain immediately after eating, I'm nauseous which had recently developed into throwing g up when trying to eat food. My output his high and watery and I also have awful pain from bad gas.

I have been on every treatment currently around with ENTYVIO/ 6mp combination being my final option before trials. ( I have been on it for 9months)

Right now I am stuck. I'm waiting for my meds to start working again ( we had to stop for 4 weeks due to surgery)., I am waiting for a camera down my throat, my doc doesn't want to risk a pill cam due to the risk of a blockage. And for the past 2 days I have not eaten anything due to the pain.

I have no idea what to eat?! I can't tolerate anything creamy like soups or fortisips due to sickness. And I'm finding it difficult to find any liquids that will provide enough calories/ nutrients.

I am also on a high dose of Imodium, omeprazole, tramadol, simeticone, multivitamins AND dioralyte.

I need help.

 

[ronroush7]

I am so sorry. Sending support.

 

[Jabee]

Gosh that all sounds just awful. When I have partial blockages I drink bone broth. It has quite a bit of protein. You should be able to get beef of chicken. I usually go for beef (even though I can't tolerate much red meat).

My flares have all been located in my small bowel, with severe pain, nausea, and vomiting being the primary symptoms. It sounds very similar to what you are going through. During my second one I couldn't drink anything either. Please make sure you can stay hydrated. Have your doctors checked to make sure everything is okay with the surgery? Has your doctor considered a CT scan or an MRI? I understand why they don't want to do a pill cam, but an endoscopy (unless it is a double balloon enteroscooy, which many GIs don't perform) reaches only as far as the end of the duodenum. That leaves the entire jejunum and most of the ileum without imaging. Have you spoken to your doctor in the last couple of days? You might need to go to the ER because you aren't able to eat, especially if you can't hold down fluids. Please take care.

 

[ronroush7]

Agree

 

[Becky24]

Gosh that all sounds just awful. When I have partial blockages I drink bone broth. It has quite a bit of protein. You should be able to get beef of chicken. I usually go for beef (even though I can't tolerate much red meat).

My flares have all been located in my small bowel, with severe pain, nausea, and vomiting being the primary symptoms. It sounds very similar to what you are going through. During my second one I couldn't drink anything either. Please make sure you can stay hydrated. Have your doctors checked to make sure everything is okay with the surgery? Has your doctor considered a CT scan or an MRI? I understand why they don't want to do a pill cam, but an endoscopy (unless it is a double balloon enteroscooy, which many GIs don't perform) reaches only as far as the end of the duodenum. That leaves the entire jejunum and most of the ileum without imaging. Have you spoken to your doctor in the last couple of days? You might need to go to the ER because you aren't able to eat, especially if you can't hold down fluids. Please take care.

I am able to tolerate water and dioralyte ATM and I'm going to try some fortijuice later so I'm not dehydrated yet , it's just anything heavy or creamy that make me feel extremely nauseous.

My consultant and my nurses know exactly what's going. And they are 90% sure I have SB bowel activity so they don't want to do any invasive tests when the treatment is the same. The endoscopy is just to see if there is anything going on in my stomach.

I also had a CT scan and ultrasound and few weeks back when then were looking at the pocket of fluids post surgery. So as far as I'm aware they didn't see anything then but maybe it's different now?

I just have no idea what's going on, I'm freaking myself out and doctors just seem to be saying wait and see.

PS. I also went to a&e last week and they said it wasn't my crohns ( even though my crp was up to 38) and that I probably had a stomach bug ( which was tested negative by my consultant).....idiots

 

[Scipio]

I don't know whether a low fodmap diet would help, it's usually more for IBS than IBD. Might be worth a try. In any case there is that new low fodmap nutrition drink, ProNourish, that is on the market now.

 

[Lady Organic]

have you ever tried elemental or polymeric liquid diets? Ask you doctor, nurse or nutrionnist about these. wishing you well.