Horrible symptoms. Tests reveal nothing.

I'm sorry you're going through such a tough time. In a way, ruling out anything severe, esp. Crohn's related is a blessing. Not much consolation though when you're in terrible pain, and looking for answers. Could be so many things. You've had some intensive diagnostics already, so really hard to say. Are you still on TPN?

Since they've ruled out so much, I'm wondering if it's viral or bacterial at this point. Can only guess, but unfortunately you're left with having to continue to pressure your GI for answers. Do you have any pending testing upcoming? How was your bloodwork? Please keep us posted, and hope you're feeling better soon.

Where is the pain? Any specific spot. You can definitely have a structure without being seen with CT or mri. What type of tpn regimens are you on? Getting lipids? Do you hurt while infusing, but less when your not? Do you infuse at night while sleeping? Or during the day when your up? What is your volume?

Randy. Tpn 25 years.

The reason I asked about your Tpn and lipids is the fats in the lipids can f with your liver , but that's on the opposite side as your pain. They can also mess with your pancreas and spleen which are on the upper left. Your pancreas secretes digestive enzymes to help digest food and fats, just as the gallbladder secretes bile for fats. If your not eating much, your pancreas has less to do and could be reacting to going to the bathroom and spasming to release enzymes. Which would not show up on a few second scan in a CT or mri.
If your not seriously under weight, you may benefit from asking your Tpn Dr to stop the lipids as it will f up your liver anyway. Feeling good while infusing is understandable as your most likely not eating and organs can rest.
If you are not seeing a Tpn specialist I would suggest you find one. A general practitioner or gastro dr can get you started but a specialist should be evaluating your nutritional needs weekly and adjust your mix as needed.
Also ask if you can try infusing over 10 hrs instead of 12. I have done that for a number of years and works fine for me. Frees up 2 hrs each day with a slight increase in ml per HR rate.
What pumps do you use?
I assume your doing your own infusions if you've been on it that long.
I'm so excited to find another Tpn user on here.😋
I also assume your in a British commonwealth country since you used the term " in hospital" if you were in the USA I could point you to a couple places to be evaluated for long term Tpn if you haven't been.

Randy

Hello Randy. And thank-you again for your thoughtful reply.

I forgot to mention that I have had two colonoscopies quite recently and neither showed anything amiss. So I think we can rule out diverticulitis.

I do have strictures and kinks in my bowel.

I have a specialized - and highly regarded - TPN team at one Toronto hospital that oversees the TPN for several dozen patients. They check my blood-work semi-monthly and make adjustments as needed. And while in the hospital my GI works from last week the nutritionist and TPN specialist there reviewed my blood work and TPN prescription and no changes were recommended.

Sorry but I am having such an awful day I am going to sign-off now.

Thank-you again

Hi Randy,

Sorry to close off so abruptly yesterday. Better day today. I hope you are doing well.
I'm going to be in touch with my GI to discuss next steps.

Mary