This is Part 1 of Ostomy Orientation Week – all to do with surgery, hospitals, possible complications, the recovery period and more!
1 – Getting to know you 🙂
I’m Laura, 36, from Sydney Australia and I have an Ostomy
- When did you have ostomy surgery? — 2013
- Why did you have surgery? ————– Crohn’s disease*
- Name of procedure? ———————– Pan proctocolectomy
- What sort of ostomy do you have? —– Ileostomy
- How many surgeries have you had? —- Two
- Is it temporary or permanent? ———– Initially I had a temporary loop ileostomy, but when this failed to heal the inflammation and I was still very sick and passing significant amounts of blood after 4 months, I had my colon, rectum and anal canal removed and now have a permanent end ileostomy.
* I have Crohn’s disease and after 4 years of failing a range of medications and other treatments, and being unable to get my Crohn’s under control or into remission, I decided to have surgery. I was not responding to medication and had to weigh up the side effects of continuing medication, the risks of NOT having surgery and my overall quality of life. I’ve been an ostomate for 3 years now, and haven’t looked back since!
WHEN AND WHY DID YOU HAVE OSTOMY SURGERY? PLEASE FEEL FREE TO INTRODUCE YOURSELVES!
2 – Was your surgery Emergency surgery or planned? 🚑 🏥
I knew from one of my early hospital admissions that surgery was always a possibility. At one stage I had a stoma nurse go through everything with me because it looked like I might be rushed in for surgery (just in case). My surgery ended up being planned, so I had quite a lot of time to get my head around it all and prepare for it (especially mentally). In some ways I “chose” to have surgery after all other medical options had failed. I’m sure it would have been and felt quite different had it been an emergency and I’d just woken up with a stoma, without any time to take it in or consider it in advance. Either way can still be difficult, but I think it can make a big difference to how you feel and manage overall post-surgery.
Did you have emergency surgery where you ended up with an ostomy or did you know going in? Did you choose to have surgery?
3 – SCARS: Key hole (laparoscopic) or open surgery?
It’s amazing some abdominal surgeries can now be performed via minimally invasive “keyhole” surgery as opposed to conventional open surgery which requires a larger cut in the abdominal wall. It can also make a difference to your recovery time. My surgeon told me he would try to do keyhole, but there was a chance it might change to open during the procedure.
All went to plan during my op so it was done laparoscopically, and I only have a few small scars from the incisions. Incredible! They may only be 3 tiny little scars, but they are still my personal little reminder and battle wounds ❤
How was your surgery performed? What do your physical scars look like and how do you feel about them?
4 – How long did you spend in hospital?
For both surgeries I spent around 10 days in hospital. The first surgery (loop ileostomy) was mainly learning how to manage and change my ostomy bag. The 2nd surgery (pan proctocolectomy) was mainly recovering from the operation and making sure everything was okay.
The hospital won’t discharge you until the stoma is working (outputting) and you are managing to empty and change your bag on your own. It’s good if you can try and do this yourself as soon as you’re feeling up to it after surgery – it made me feel better and more independent. Once I was off all the pain killers that made me feel like a zombie, I had a go! I was a bit hesitant at first, but I had a nurse watching and helping until I was confident on my own. After being discharged from hospital I still had regular appointments with my stoma nurse and could always call or email with any questions or concerns.
Must haves for my hospital stay were a few good books, my laptop (or tablet), comfy trackies and slippers, a nice little throw rug and my ipod.
HOW LONG WERE YOU IN HOSPITAL? HOW LONG BEFORE YOU CHANGED AND EMPTIED YOUR OWN BAG? WHAT DID YOU PACK FOR YOUR HOSPITAL STAY?
5 – HOW LONG AFTER SURGERY BEFORE YOU POO / EAT / DRINK / WALK AROUND?
My stoma started producing output within 24-48 hours. I was allowed liquids the day after surgery and moved onto solids by day 2 (this will be dependent on your output). I had a dietician visit twice during my hospital stay to talk about everything ostomy and food related.
Deep breathing is very important after surgery – this was a bit uncomfortable and painful to do at first, but has to be done to avoid lung complications. I was given a device which I now know is called an incentive spirometer to help practice my breathing (which I was meant to do for a few minutes every hour or so).
The day after my op I had a physio get me out of bed. I only made it as far as the chair in my room on day 1, but each day he would help me move a bit further. I felt like I’d been hit by a bus at first, but each day got easier and I gained more and more strength. By day 4 or 5 I was walking up and down the corridors of the hospital on my own!
What are your experiences?
6 – OPERATING TIME + PAIN RELIEF 💊💊
For my pan proctocolectomy I was on the operating table for around 6-7 hours, followed by several hours in recovery. When I woke from the anaesthesia, I was in a significant amount of pain and my body went into a bit of shock (I don’t really remember any of this). The morphine wasn’t doing the trick, so my anaesthetist gave me Ketamine (sometimes known as Special K), which sedated me again until the pain had subsided enough for me to calm down. The Ketamine made me feel awful – like I was in a trance and very foggy. I was relieved after 48 hours when they stopped the Ketamine, as it was so difficult to concentrate and I did not at all feel myself. I was then on a Patient-controlled analgesia (PCA) pump for a few days, where (within limits) I could control when and how much medication (morphine) came through the IV. By day 3 or 4, I was off the real heavy stuff and had Endone and/or Panadol or Codeine on an as needs basis.
How long were you on the operating table? What sort of pain relief were you given? 💊💉
7 – HERNIAS
Hernias can be an issue and concern for many ostomates. They are basically caused by a weakness in the muscle or abdominal wall, where an internal part of the body pushes through forming a lump or swelling. If the weakness occurs where the stoma is attached, it is known as a parastomal hernia.
There are several types of hernia, and many causes (I remember my stoma nurse warned me I could get one from sneezing in the first few weeks post op!). There are also many ways to help prevent hernias including wearing support garments and avoiding heavy lifting. I am fortunate never to have had a hernia, but I understand they are quite common.
Have you ever had a hernia? What caused it? What does it feel like? Any tips?
8 – POST SURGERY COMPLICATIONS
Apart from hernias, has anyone had any other post surgery complications? I am incredibly lucky not to have had any major complications post-surgery. It did take quite a long time for the wound on my anus / barbie butt to heal. I had to use pads because the wound wept and have salty bum baths twice a day, but it gradually improved and was fully healed within 9 months. •• My biggest post-op issue is gynaecological related (due to my uterus moving around and scar tissue causing painful sex and issues with my period). NB That’s what this picture is about!!! You can read more about this on THIS POST.
Have you had any post-surgery complications?
9 – BACK TO WORK AFTER SURGERY:
How long after surgery did you go back to work? 🏢👔💼
Once I was home from hospital, I was still pretty weak and sore and got tired easily. I spent the first few weeks or so at home laying on the couch watching tv and sleeping a lot, but also made sure I got up and walked around a bit every day. From memory I had around 6 weeks off work in total, including the time in hospital (they do say to allow 8-12 weeks recovery time). When I was ready to return to work (I only worked 3 days per week), I started off doing a few half days to ease my way back into it. Even then I was quite tired, but it felt good getting back to a normal routine. Everyone at my work knew and were very supportive which helped a lot, plus I work a relatively sedentary desk job 😊
Have you returned to work post op? How much time did you have off? Perhaps you weren’t able to work prior to your surgery, but now you can?
10 – Phantom Rectum
It is not uncommon after bowel / ostomy surgery to still feel the physical urge to go to the toilet, sometimes with some pain where the rectum used to be. This is known as phantom rectum. It’s not easy breaking a lifelong habit! The urge should go away on its own after a while without any treatment. Some people say sitting on the toilet (even though you won’t actually be able to do anything) helps relieve the feeling. I experienced this a couple of times the first month or so after surgery, but I think it was mostly mind over for matter for me and the feeling quickly disappeared. I’d also get a dull ache and heavy feeling in my pelvic area especially when tired or if I’d been walking or standing a lot. My stoma nurse said that was nothing out of the ordinary and with rest and time that went away too.
Has anyone had experience with “phantom rectum”? How long did it last?
11 – MEDICATION 💊💊💊 Do you still take any medication post-surgery?
My list of meds has reduced significantly, but I do still take Imuran (Azathioprine). I had hoped I might be able to go med free after surgery, but as Crohn’s disease can appear anywhere in the digestive tract, I’ve been advised to continue Imuran for maintenance therapy and in the hope that it will prevent the Crohn’s from appearing anywhere else. I’ve questioned and weighed up the side effects of continuing Imuran versus Crohn’s, and at this point it’s just not worth the risk so I’ll continue taking it for now.
Do you still take any meds since your surgery?
12 – REVERSALS & J-POUCH SURGERY
Depending on what type of surgery you’ve had (and what bits you have left!!), you may have the option of an ostomy reversal or j-pouch surgery. I had a pan proctocolectomy, which means my entire large intestine, rectum and anus have been removed. This means there is no option of a reversal for me. I have a permanent ileostomy and I am perfectly okay with that! Even if I did have the option, I am not sure I would take it. I would love to hear from anyone out there who’s had a reversal or j-pouch surgery.
Any experiences you’d like to share or comments for others who may be scheduled for more surgery or contemplating a reversal? How long after your initial ostomy surgery did you have the reversal?
PLEASE FEEL FREE TO ADD YOUR RESPONSES TO ANY OR ALL OF THESE QUESTIONS IN THE COMMENTS 🙂