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.
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!
Day 2 I feel so tired like jet lag, I managed to go to work but felt clumsy and distant all day, my kids are home and Harry (my 11 year old) is I’ll so I’m looking after him as well, I treated myself to a glass of wine in the eve which was lovely and relaxing, Harry was up coughing all throughout the night so I was not hopeful for sleep. My output was so thick In the day and yet come the eve it went to water, total opposite, I had a normal dinner chicken, leeks, peas and potato in a mild cheese sauce. Nothing new and I took all my normal meds. Very odd for me, I hope night medications settle it.
Day 3:I managed to sleep through last night but up early and still feeling fatigued, nothing overwhelming and not enough to stop me going about my day. I haven’t noticed any changes in my output or general inflammation feeling just yet. I do have a headache. It my day off work anyway and so I treated myself to a duvet day on the sofa day whilst looking after my son who’s still off school with a virus and cough.
Day 4:I was off work looking after my son again and not had much restful sleep but from his coughing not my bowel for once! Full of energy today so I hit the house work! I feel good, at the moment, my output is normal for me and I have pain in my cuff still especially when sitting on a harder surface. In the evening I felt great, so I went on my works Christmas dinner, I had a bad allergic reaction to something and took extra pyriton which settled it. After a few glasses of wine, I got home and was absolutely exhausted, out cold by 10pm, unheard of for me. I slept through the night again, no toilet trips!
Day 5:Saturday, woke with a banging headache so slept in for once, eased by about 12. Still feeling good and my tummy totally behaving itself.
Day 6: Again, full of energy today compared to my recent levels, went for a lovey walk. Really tired in the eve, some cuff pain but bowels being good. Great considering I ate stir fry last night with beans, peppers and spring onion!
I can’t say if the Stelara has changed anything at this stage, but I can say I don’t seem to have any adverse side effects, I’m sleeping well and have some energy. My bowel seems the same but stable, but I am still on the antibiotics and suppositories, so I wouldn’t expect much change yet.
It will be interesting to see if I feel any different in week 2 now the Stelara is getting into my system.
Day 9: Today I had fish pie, I have had some intolerance once to fish this it did not like me at all, my hives went crazy and that night and be next day I had extreme pressure, needed the loo a lot more and had very acidic output. It did settle again. However, it left me with another small tear in the rectum and washed out.
Day 14 is Christmas Day!
A few days ago my stomach hurt so much, I was sluggish and felt like I had a minor partial blockage, I have been eating new foods such as green beans and lots of veg so I think it was either that or my ovulation pains. I have suffered chronic pain for a day every month or so, mid cycle, since my colon was removed!
I am pleased to say my stomach behaved well over Christmas for once. I am still getting some rectal stump and tenderness which suggests I still have inflammation in my cuff and possibly the pouch.
I have been extremely tired since starting the medication. I’m good in the day with better energy levels than before, then I crash in the evening.
I’m getting very vivid dreams and fidgety at night which is unusual for me.
I have been so careful over Christmas, I avoided all triggers and made sure when I drank alcohol, I rotated between water or something hydrating.
Christmas Day Walk!
Today is 16 days post loading and I have to say although I’m still sleeping way more than I’m used to, I am going toilet a lot less, I slept 9 hours last night, which never happens without needing the loo and in the day, typically I am only going about 5 times!
There seems to be some light at the end of the tunnel, I think the Stelara has had a minor impact and hope future injections help more.
I fear the time I must stop the antibiotics as they really help manage my pouchitis and cuffitis. I am on mesalazine and steroid suppositories as well as medication for bile salt malabsorption and histamine blockers.
Both have helped my recovery and management of the relentless inflammation.
My consultant suggested I keep the antibiotics going until I have been on several Stelara doses and this will be reviewed in future appointments.
At the moment life is good, I am managing the disease well, although, I do not want to be on so many medications forever.
In all my Stelara journey has been uneventful and is in no way as bad as I feared. I have not fallen to the many colds and virus’s that I have come into contact with over the Christmas period and feel in good general health. It has not been as effective as I wished but it is very early days into treatment, so I am hopeful.
I will keep track of my progress and update as things change. I hope by sharing my diary, it may help others about to start or those contemplating Stelara, and others, like me, that feared the worse side effects possible.
Thank you for reading!
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