Pouchoscopy, Gastroscopy and MRE with a JPouch. What exactly happens and how does it feel.

I was so scared of all the above, I’ve been ill so long I see my insides as sore, messy and fragile. I was sure the tests would hurt and trigger my symptoms, I was scared that they wouldn’t shed any light on the constant discomfort, pain and inflammation symptoms I have been suffering?

they are all issues I couldn’t answer until camera and images were taken all around my digestive system and so they were arranged.

Preperation for Tests

On the morning of the gastroscopy and pouch scope I was to fast 6 hours before and only sips of water when I had to. On arrival I was taken through a questionnaire re previous surgeries and medical conditions etc, then changed into the very glamourous gown and pants!

They even have a trap door at the back for the scope entry and one size fits all!

I had an enema administered by the nurse (made her giggle when I squealed as she pinched my bottom with the rubber gloves when squeezing the enema) and waited about 10 mins before rushing to the loo! It was actually fine, kind of nice to pass so much liquid with no straining or burn etc!

Gastroscopy

I was wheeled into the examination room and had a canula put in, I had requested sedation as I was so scared of having the camera put down my throat into my stomach and the up my JPouch when I felt so rough.

They squirted a liquid anesthetic into the back of my mouth twice to numb the back of my throat, it tasted strong, like alcoholic bananas, but worked fast. I could feel my heart rate race as I couldn’t feel my swallowing or breathing. The nurse assured me it was normal, and I was fine.

The sedation was administered and after a short while I felt slightly more relaxed. They placed a ring-shaped holder between my teeth to hold my mouth open and were ready to start.

The registrar started inserting the camera into my mouth and down my oesophagus, it felt like a lump of food going down and was not pleasant but didn’t hurt. I had several biopsies taken and they managed to reach all the way to my stomach. I had several gag reactions which were uncomfortable, and I kept burping, they said that was normal and I had nothing to bring up so was fine.

This lasted about 10 minutes and was not pleasant but necessary.

Pouchoscopy

Next, they team moved to the other end and turned me over to face away, raised my knees up to a right angle and then proceeded to insert the camera (they assure me it wasn’t the same camera for both 😉).

I felt it at first and was painful as it was passing an inflamed area. I requested Entonox as I was feeling some discomfort as it passed round my JPouch.

I was determined that this scope was a success and asked them to go as far as they need for results.

The registrar passed it over to my consultant to continue and she was able to get a clear view or the JPouch and up into the terminal ileum, by now I was feeling less pain and was able to watch.

There was a staple visible along the JPouch suture line but apparently that was normal, there was also a large polyp which they took biopsies of along with many others around my pouch and ileum.

As they retracted the camera, I felt a lot of pain as it went through the cuff and out, there was some inflammation and ulcers visible to me but not as bad as previously seem last year.

After this I was moved to recovery for about 30 minutes and was offered tea and a biscuit. I was given a copy of the report and needed to wait for a follow up meeting to be sent soon.

MRE

*Magnetic resonance elastography (MRE) is a non-invasive medical imaging technique that measures the mechanical properties (stiffness) of soft tissues by introducing shear waves and imaging their propagation using MRI. Diseased tissues are often stiffer than the surrounding normal tissue.

The next day I went to a different hospital for an MRE on my gallbladder and small bowel.

I had to fast 6 hours prior but could drink clear liquids. On arrival I was given a solution to drink over the next 45 mins. I could have just over a litre because my system has fast transition due to no colon. It tasted OK, like sweet water. (The solution is used instead of water as it won’t absorb as easily so offers a clear view of the small bowel)

I was given a gown but was allowed to keep my clothes under just remove anything with metal such as my bra. I was asked to lay on the MRI table and a canula was put in my arm.

I had to lie a long way down on the bed and a wedge was put under my legs for comfort, I was able to lie on my back as they knew it is not comfortable to lie on the front with a JPouch for long. They placed a pad over my abdomen area and secured it and then put headphones on me as it is very loud.

They moved me into the machine. I am very claustrophobic and was relieved that I was not put in any further than my chest. I had my arms right up over my head and it began.

The MRI is loud but nothing visible happens, I was asked to hold my breath several times and images were taken. Halfway through they administered a dose of Buscopan to still my bowel and a contrast die through the canula. I didn’t feel them go in but after about 5 mins my eyes went blurry, I was warned about this and it was normal and short term. They continued to take several images and after about 15 mins I was done.

It was totally pain free and although I was put in a little further into the tube during the process (up to my chin) I managed to control my panic and was fine. After I had an incredibly dry mouth and my eyes cleared.

I needed the toilet a few times over the next 15 minutes and passed all the liquid, it was easy but made me feel washed out and exhausted.

I returned home to rest. I was tender from the two days prodding, poking, flushing and biopsies but it was all over!

I now await the results; I am worried they will shed no light on the extensive abdominal pain I’ve been suffering and that will give me no answers as to what to do next! I did see on the scans that my JPouch, at the moment, looked healthy and that has given me hope that it may be saved and the Stelara is working! I just need to know why I am suffering the high pain constantly and my joints hurt more than normal and I extremely fatigued.

Research

As a side note to the last few days, I have also been taking part in a research study for a lady who is studying as a dietician, and now reseraching for her PHD, the effects of gut bacteria and diet and the impact on pouch/gut inflammation.

I kept a food diary for 5 days prior to the tests, and gave her stool, urine and blood samples. I hope the research helps the medical world to understand the disease better and go someway to help others. The dietician recommended that I try a gluten free diet to see if it helps balance my gut bacteria, she felt it could be part of my issue and I agree. I have started it now and also reduced lactose in the hope of finding a better way to heal myself.

I stopped my permanent antibiotics 2 weeks ago as they were not seeming to help anymore, I will stay off them if I can, my pressure pains have returned but vary depending on my output. I am using loperamide still and will continue Stelara and see what the next dose brings!

I hope by reading my story, it helps you feel better about the procedures if you face the same, or helps you support others that may need.

The outcomes from my tests will determine my next step! I hope they highlight a reason for my suffering that is treatable, I will need to decide if I fight on with my JPouch or go for a permanent ileostomy!

Keep fighting!

It takes guts!

Andrea xx