A tough day and a tough decision

As many of you know, I started back an university last week. I deferred my first semester at the beginning of this year because of colitis and my emergency surgery, and throughout the three to four months of down time between semesters I was recovering very well. On Tuesday last week, however, I noticed a painful lump under my pelvic/pubic incision line, which I thought was a hernia. It turns out that my surgeon forgot to mention that when he removed my colon and left the rectal stump, he attached the top of said rectal stump to the inside of that incision. The idea is that after two to four weeks post-op, a few pin-sized holes will open up and drain any blood and mucous, as well as the same draining through the back passage. The idea is that when the colitis flares up, it can easily drain outside the body without flowing into my abdomen and giving me peritonitis. Having never been told, I never expected this to happen.

By the weekend it had turned purple, so I went to A&E where the doctor seemed pretty confident that I would be admitted, but he called my surgeon who explained to him that he gave me a "closed mucous fistula". Please take note of the word closed. On Monday night, I took the absorbent pad that the surgeon had put on after checking it earlier in the day to find that it was no longer a few pin-sized openings, but it had unzipped between those openings. It was now an open wound about one third of the length of my incision. It bled profusely, to the point that I had to wear a second ileostomy bag over it because any pads or gauze I covered it with would be soaked through.

Yesterday, I told my surgeon's nurse, who said she'd call me back when my surgeon was back in his office, which wasn't until this morning. It turns out that my surgeon isn't going to fix it, and he instead sent me to the stoma nurses to organise some extra bags that are basically a very small stoma bag with a gauze lining on the inside. Upon seeing the stoma nurses today and removing the bag I had covered the wound with, the wound had increased in size to half the length of the incision, so not only does it look awful, but it's very long. I was expecting the surgeon to do something to improve it, but he instead just told me to maintain it until my J-pouch surgery at the end of this year.

It took what felt like an eternity to come to terms with the ileostomy and the routine of changing and maintaining the bag, and now I have a second bag, which I'm told needs to be changed twice a day. It feels like I've been thrown back to the beginning again as this wound is very hard to come to terms with, but there's not much I can do. It seems that it will require far more maintenance than the ileostomy bag. Today was possibly the most angry I've ever been in my 18 years of existence. I am particularly frustrated with my surgeon for not only refraining from ever mentioning that the wound will open slightly and ooze, but also for doing nothing to aid it now that it's open.

As for my tough decision, I mentioned that I have my J-pouch surgery booked for the end of this year, the 23rd of November to be precise. I also mentioned that I have only just started back at university after deferring my last semester, but I've now got the option of pulling out of this semester as well, and moving my surgery forward so that I don't have to maintain both the wound and ileostomy for the next four months, on top of a full-time university course. I have until this Friday to decide, so 48 hours from now, otherwise I will incure a financial penalty and will not be refunded the $4,500ish for this semester.

It was a very, very tough day and I have plenty to think about before Friday...

I would chose life over dollars every time.

Hello Hamish.
Thanks for updating us on your unenviable situation. it provides a salutary lesson about our perception of surgeons and the medical profession in the modern world. I hope you manage to work out the best decision for you and your circumstances. The devil and the deep blue sea springs to mind.
Best wishes
Bill

Hi Hungry,
Did you speak with a university adviser about all your options? Perhaps you could take one or two on-line courses where you have maximum flexibility especially with timelines. Whatever else you do, be sure the university understands your medical situation and does everything it can reasonably do to support your introduction to college life.
PB

Hamish,

Just checking in, how are things a few days later?

Hungry Hamster. Life sends us interesting challenges that will make us grow. This one is frustrating as well. I had similar surgery to yours it sounds back in 2012, but I have never heard about what they did with your stump and that wound drainage. I would be very alarmed if I had that happen with no explanation. I have my rectal stump but without that wound you have. Why is that necessary?? I would want better answers. But that is me.
As for the inflammation, I have had amazing success with Turmeric. I have no angry bloody shedding anymore. I drink a Turmeric latte almost every morning on an empty stomach. If I am rushed, I take a really good Turmeric supplement instead.
All the best to you. BIG HUG. WE HEAR YOU:)

Vikinga is correct about the turmeric tea helping to lessen inflammation. It also improves the clotting factor of your blood which should help you right now. However, my cardiologist does not want me takin turmeric in any form because it counters the effect of the warfarin I am also taking. So I leave it out but still drink the other components of the tea. Any help is better than none.

Actually Don, Turmeric is THE most studied natural substance on the planet AND has now been studied to have a significant benefit in reducing inflammation in those suffering from Ulcerative Colitis , such as "HungryHamster" and myself, as well as those with Crohn's. Both the tea with the real root, or turmeric latte made with organic ground turmeric, or a good quality supplement on occasion can have profound healing effects on colitis. I can testify to that!

Dear Hungry Hamster - I urge you to get a second option from a reputable surgeon. Your story just doesn't seem right to me. Good luck.

Hello BruceFan,
It was my surgeon who explained it to me. He is a very reputable surgeon whose main surgery is colectomies and J-pouches. I don't know why he never warned me, but that's just the way it is. What he explained made sense, which is that he attached the top of the rectal stump to my abdominal wall, which has intentional weak spots, so that when the colitis inevitably flares up blood is able to easily drain without risk of any of the diseased mucous/blood entering my abdomen. If it did, I'd get peritonitis. I can understand that, but I don't understand why it wasn't mentioned to me and why it took four months to open up, and why it opened completely rather than just at the small weak points. I've decided against bringing the surgery forward and will instead learn to manage two bags. I learnt to deal with an ileostomy, so I'm sure I'll learn to deal with this too.
Thanks for the concern,
Hamish

Vikinga, I am glad to hear they are studying these things. I already knew from personal experience that it helps heal inflammation. It was those same studies that found it increases your block's clotting factor, which is why my cardiologist does not want me take it. I had 14 pulmonary embolism in 2015 and the next one might kill me so he wants to make certain there isn't a next one.

Thank-you Don, I am aware of your situation as we have discussed at length in person:)
The Turmeric is to help the INFLAMMATION of the COLITIS that Hungry Hamster is referring to.