Pain and problems living with a failed JPouch! Getting surgery fit and ready! Alternative pain management methods, what has worked and what self help can be done.
I am having my JPouch out on the 3rd February 2020, Full removal including closure of my anus and creation of a permanent Ileostomy Stoma. I suffer from Indeterminate Colitis although it is now classed as Inflammatory Bowel Disease as I have no Colon.
I have written in a separate post sharing why it has failed and what has bought me here.
But now i'm stuck in the in-between so what now and next?
With a troublesome JPouch and stubborn disease can come great pain! Not just as you would expect in the JPouch, Cuff or Anus, but all over.
Joint pain and inflammation are a huge part of the bowel disease. People often assume because the Colon is gone, so has the disease (Indeterminate Colitis for me – this is Ulcerative Colitis with some genetics of Crohns so can develop outside of the Colon in the future). Sadly, this is not true for me and many sufferers.
Joint Pain
IBD (Inflammatory Bowel Disease) can also cause inflammation, pain, stiffness and swelling in the joints all over the body, as well as tenderness, fatigue and weakness of body tissue.
For me it has gifted me an inflamed left knee, pain, stiffness and extreme tenderness in the elbows, wrists, shoulders, hips, spine and feet.
I may suffer from one or all of these at anytime and often with no rhyme or reason.
In addition, extensive abdominal surgery can cause adhesion's and troublesome scar tissue. Personally this has caused me pain in the left side of my stomach, the old temporary stoma site, the incision site near my pelvic bone and a stuck left ovary.
Every other menstrual cycle is agony and the pain can last 12/36 hours and radiate up into my stomach and back.
Fatigue
Fatigue is also a common side effect for many IBD sufferers, often due to poor absorption of essential nutrients and vitamins, but often as a result of waking several times every night to go to the toilet or because of pain, especially spasms in the rectal cuff if any inflammation or imbalance of the gut is present!
This is my issue most nights and although I can sleep from 6-9 hours, it is often broken sleep. I have not slept through the night in the last few years and am constantly struggling to settle.
My Superpowers
So with all this going on, how do I cope to work, be a single mum raising 2 wonderful boys, have a beautiful, active relationship with my fiance, write this blog and exercise at the gym 3-4 times week?
All whilst I have active cuffitis and reoccurring pouchitis, and am waiting JPouch removal and a permanent Ileostomy with full closure of my remaining rectum? I have superpowers! Haha I wish!
I have found many things to make this all manageable and keep my physical and mental breakdowns to a minimum.
I hope by sharing the things that are currently working for me may inspire others or give ideas to try if you are suffering as well. Just please remember, I am not a health professional and everything I share is what I have had under guidance of my specialist support team. Please consult yours before trying any ideas.
Nutrition
Firstly, I keep my blood tests up to date, adding vitamins as needed - these currently include Folate, Vitamin D, B12 injection’s every 3 months and plenty of vegetables in my diet!
Hydration is always a factor and I use a hydration additive to my water daily, especially when I am exercising or have high output. (I have a separate blog on how to stay hydrated with a JPouch, stoma or short bowel issues, remember its quality not quantity!)
Medication
I mentioned before I have struggled with scar tissue and ovarian pains etc, I was put on Gabapentin to manage this (and help with the joint pains) and although it did help a little, I was not happy on such a high risk, toxic drug. I was referred to a pain management clinic and am still awaiting a review (4 months later) at a specialist hospital, they hope to put me on a week long course to learn ways to manage living with chronic pain.
Steroid Injections
However, the pain clinic did admit me for a series of what I believe were steroid injections in and around my abdomen, pelvis and left flank side. This was 11 weeks ago now and I am delighted to say the result has been amazing. I have been off the Gabapentin now for 8 weeks and have no scar tissue pain in those areas at present. They did 5 deep tissue injections as a day patient and although it was not a pleasant procedure, it was totally worth it. I have had no ovarian pain since as well which is amazing! I can go back for a second dose if needed within 6 months but feel I will not need it at this time.
Biologics
Joint pain is proving a little harder to manage but i'll share what is helping so far!
I have been under a rheumatologist for a while now and they feel I have fibromyalgia type pain, caused directly by the IBD, especially when it is active in my remaining cuff and JPouch. They also have said I suffer Enthesitis; particularly in my knee and elbows, and plantar fasciitis in my feet.
I was put on Stelara (a biologic drug therapy) in December 2018 by the Gastroenterologist to deal with chronic inflammation and they hoped it would double up to help the joint issues. It did not, it actually made me worse in all areas and I stopped it in July 2019. Since stopping I continue to suffer and whilst I am waiting for surgery to remove my remaining JPouch etc, I have been left to manage the pain myself…
CBD Oils
The Gabapentin, as mentioned previously, again did not ease my pain enough to make it a viable treatment. I have now been using CBD oil in capsule and liquid form to ingest, and more recently directly to the worse areas with a muscle/joint balm. I have noticed a positive improvement in my joints with the exception of my elbows. I have been able to exercise more and am noticeably less stiff when moving around.
Lifestyle Changes
I researched were I could and have recently changed my diet to reduce or eliminate foods known to cause inflammation, such as; sugars, white bleached foods and dairy. I have also recently been taking a high dose of Turmeric in liquid form. Since these changes I have managed to go to the gym 3-4 times a week.
It has been VERY tough, but I am persevering as I want to be in the best shape I can be before surgery, to allow faster recovery. I am also trying to lose some of the weight gained through the last few years being unwell.
Exercise
Exercise has been a key factor in my well-being, mentally and physically recently. I have always been an active person and was finding the current issues depressing and frustrating, I wanted desperately to get fit and lose a few pounds, but it hurt so much. I have started a long, slow journey by joining the local gym, the kids and my fiance have joined me which is helping immensely! I am using many support garments and sometimes feel more like the Mummy than a gym goer, but I don’t care! I do not want more injuries or hernias!
I am taking CBD oils before and after each trip as needed and set myself small, challenging yet achievable goals and track my progress on my Garmin watch. I wanted to work on my abdominal area and have researched suitable exercises.
My ab routine is mainly made up of crunches, leg lifts and cable resistance weight work. I am following research from a fellow stoma fitness instructor and working the abdominal area indirectly to avoid issues. This is not always possible if my elbows are too painful however, so I mix in a decent amount of HIIT (High Interval Intensity Training) work on the cross trainer and yoga when I can.
There are many days I would rather stay in bed or hide away, but I am a stubborn person with determination, and I will not let myself off the hook all the time I have loved ones there pushing with me. If they stop, I cannot promise I will be as focused… I’m not perfect, only human!
Vegetables
I mentioned earlier that I eat more vegetables, this has been a very challenging thing to get used to as it changes and increases my output dramatically, I also must ensure they are well cooked and I chew, chew, chew! I do not want any more blockages! For now, I am finally loving a varied healthy diet, this will all change again after surgery, but I know I will get back here soon!
All of the above I do with the best intentions of staying as well as I can. I live each day in a lot of pain, and this is my way of coping.
Just because I can do these things doesn’t mean I am better, but they give me a more normal quality of life.
I have surgery in February 2020, and I cannot wait to get my health back on track and start the rest of my new life with 'Fred the 2nd'!
I am a good example of chronic illness’s not being visible!
Not every disability has visibility!
I hope there is something in here to help or inspire, or just to let you and me know we are not alone!
Stay strong and keep fighting!
Andrea
xx