Stelara - Before, during and after! Treating Pouchitis and Cuffitis. My Diary!

I have been suffering chronic cuffitis and pouchitis since creation and connection of my JPouch 16 months ago. However, I suffered inflammation in the rectum for the last 3 years since my initial colon removal and therefore this issue has not been a surprise, just unfortunate and relentless.

I have been on permanent antibiotics, suppositories and various medications and creams etc, over the last 16 months. These have managed my symptoms to a certain extent but have not resolved the inflammation, ulcers and other effects of active disease since surgery.

I am currently diagnosed as indeterminate colitis and am being treated at the moment more as Crohns Disease due to its reluctance and how it presents under examination.

Biologics are my last resort before I have further surgery, which would probably be a permanent Ileostomy Stoma and JPouch removal.

This is my Stelara journey so far…

Before the start of therapy I have many blood tests carried out to check for interactions, antibodies, underlying ailments including checks for TB, HIV and Hepatitis, deficiency in any areas and potential threats with treatment.

I was given the choice of Vedolizumab or Ustekinumab (Stelara).

After extensive research and in-depth discussions with my Bowel Consultant and Rheumatologist, we decided Stelara was a viable choice, it works on the complete body so as well as fighting inflammation in the gut, it is potentially good for joint pain and could help my Enthesitis.

As I live a few hours’ drive from St Marks, I was able to have a telephone consultation with the IBD specialist, nurse, pharmacist and consultant who apply for funding, to get the treatment approved. It lasted approx. 40 mins and was only feasible as my consultant and pre-tested my bloods and carried out chest X-rays.

They went over many things including current symptoms, frequency, pain etc, as well as my medical and surgical history. My disease is being treated as Crohns or Colitis at this time due to it changing characteristics. They discussed the risks and potential dangers of treatment and how it will be managed.

Following the meeting, funding was applied for and approved, and I was booked in asap. There was an 8-week waiting list as the first dose is via infusion in the clinic at hospital. It is a strong loading dose and I must be monitored before, during and after for any allergic reactions.

8 weeks later and I arrive in Harrow, it is a very long drive, therefore we stayed the night in a local hotel as a treat the night before. I was joined by my wonderful boyfriend throughout.

Infusion Day!

We arrived at the hospital at 9am, they completed final checks, including weight, temperature, allergies etc and they agreed to load me with antihistamines and IV Steroids first. I suffer MCAS which causes me to have random and often serious allergic reactions to different things, especially medications via IV.

I have had drug induced lupus from Infliximab and a severe reaction to Morphine following surgery, so I wasn’t taking any unnecessary risks this time!

The infusion itself was via a single narrow cannula in my right arm. It ran slowly for an hour and was followed by a flush solution. At the start of the infusion I felt slightly light headed, and as it progressed, I felt heavy and tired, however about half way through I stated to feel more settled and alert.

After the IV was disconnected I stayed for a cup of tea and snack.

Throughout the infusion and for the hour after, my blood pressure and heart rate were monitored every 10 minutes. It went really well, and I was sent home. I was booked in to return in 8 weeks for my first injection and to be trained to carry them out at home in future.

Once home, after few hours later I felt exhausted and very pale. I was told to rest for the rest of the day to let the medication work its way into my system and I did not need telling twice ;) so far apart from feeling drained and knackered, it all seems a good start!