Many have asked me `are you any better off now with a JPouch over active disease?’ This is no easy question to answer, I have been troubled with issues at all stages, so I thought it may help me and others to see how I compare the worse of each!
This is not intended to be a negative post as I have survived all stages and continue to fight on with hope that one day I’ll be in full remission.
I am sharing to shed light on the differences to help people making the decision for surgery, to bring together the experiences of myself and others. It has become apparent during my research that the majority are better off after surgery and it’s a noticeable change.
I asked in the forums I use, for people to share how they compare their quality of life now after surgery, to before with active disease, including mainly Crohns and Colitis.
Do flares still happen after surgery? and if so, how are they better?
In my opinion its immensely better and that was also the consensus.
I’m sharing the responses as well as my personal experience, however, please bear in mind that this is, unfortunately, mostly answered by me and others like me that have had a few issues with their Stoma or JPouch.
There are millions out there, I am sure, living a full and fruitful life after surgery and with no need to reach out to support groups such as this.
So where do I start… I read back through some of my earlier blogs I wrote when I was mid flare with what was then diagnosed as Crohns, I think this shares the truth about how bad a flare can be written first hand!
`After 2 weeks of being Ill! Pain beyond belief and anxiety crippling! I am in constant pain, but everyone wants a smile and positive news, so I'll pass it off, but it hurts, like hell!
Every breath, every mouthful, and every poo! Pain beyond contractions, with no release, no let up and no reward!
So, I take the hospitalization and the disgrace of being incontinent and the 22+ Meds a day plus suppositories, because there no other way!
I leave my home and kids for a week because if I don’t, I actually fear I may die... The pain is so much... I smile and laugh and flirt with life and always hurt. I won't say a word.
Physically I’m suffering chronic stomach ache like someone is jumping on my gut, pulling it inside out, cramps, spasms, blood, exhaustion, weight loss or gain if blocked. frequency day and night, accidents, urgency, leakage, explosive painful wind. Sickness, faint. Stabbing feeling up bum, dragging aches below, hemorrhoids and piles, anal tears, steroids, immune suppressants and more Its hell! This is a flare for me`
Now I will jump forward 3 years to my experience with a JPouch but suffering chronic Pouchitis and Cuffitis at the same time!
Mentally I’m stronger! I know I can win this and have had bouts of great health since take down, even with these issues. I get down at times that I am still suffering after all my body has been through, but hey who wouldn’t!
I’m on various medications to manage my flare, these slow my output, I have also had further diagnosis of conditions as a result of having no large bowel, but they are managed with medications.
So, in short, I still rattle from all the pills, but they are working now, and I hope when I start Stelara in a few weeks, the medications will reduce, and the flare will hopefully, finally ease.
So how does it feel physically to have a flare with what’s now diagnosed as Indeterminate Colitis with a JPouch…
Cuffitis
Ache and throbbing in anal canal, tenderness in lower body and stomach, urgency / pressure and frequency, night loo trips, tiredness.
Pouchitis
Aches and sometimes a flu like feeling or low fever, watery urgent output, tenderness around bowel and lower stomach like bruising, tiredness, frequency and night loo trips, fear of accidents. Gurgling gut and some wind. Pressure on cuff, occasional bleeding.
However, with both these issues, the great news is, personally I don’t get the stomach cramps, constant excruciating pain! I very rarely loose control (maybe 2 accidents in 3 years),
I can function and work full time, socialise, go on holiday, exercise and have an all-round reasonable quality of life.
I wont lie, at times it gets tough and exhausting, I know I have said on occasions, why did I have surgery? but looking back to how bad I was, I AM better off, it’s a long journey and, for me, this is a step in the right direction. IT IS better than active disease and I have my life back! The issues I face now are mostly treatable conditions and I have not given up fighting them yet!
If I cannot shift them, I can go back to a bag! There is hope!
I asked other people their experiences and, with their knowledge, share their feedback below!
I hope this will give an honest picture of life after JPouch surgery even with troubles and give hope to those scared of the unknown!
I hope this gives some hope! There are no guarantees with JPouch surgery, its not a `cure` but it is not the same either! it can for many, hopefully get better! Keep fighting and keep supporting to raise awareness and knowledge.
Thank you for reading, I have written in detail about my journey from active disease through surgeries, to suffering with Cuffitis and Pouchitis at various stages over the last year or so, I have also shared many tips and tricks I've learned on the way. Writing and sharing helps me deal with what I go through, Please do visit my blog if you feel it may help you. Thank you for reading.
Andrea x