New forum for stoma reversal and LARS discussions

Not good , all ways got wind , leakage and internal burning pain , some days not as bad , I am on fybogel twice a day and liquid loperamide 5 ml 2/3 times a day , I have  been referred to gastrologist Ann Wilson at st Marks Harrow since september  , basically because my cancer  was so low , I like you have no rectum and I had a leak on my pelvis resulting in having endosponge that drained it off , all this makes any hope of things getting to any normality  pretty slim , I not going to lie some days I struggle and I feel like I cant take it anymore , the thought of a permanent bag seems worrying  to me as what if a few years down the line there is a solution that means I dont need a bag then its to late , I live in hope that they might be able to grow a rectun from stem cell   

Oh not happy anymore

I am sorry that you’re feeling so low. Did you know that having an Ileostomy means that our body’s can’t get Serotonin. It comes naturally through nuts   Last Christmas I was so low there was so much going on. My hubby recently diagnosed with Parkinson’s our daughter loosing her baby plus Covid restrictions. I thought it was that the doctor gave  me some happy pils. Citalopram. I felt better and decided couple months. I came off and whoosh down I went. Then I researched and found that I was lacking serotonin. I just keep taking them as with this reversal I’m still not able to eat a healthy nutritious diet. 
I feel differently to you may be it’s because I’m old but I I had that cancer ghoul in me for over fifteen years diagnosed as piles. I struggled going to the toilet and would spend forever for a tiny ribbon poo. My stomach was bloated and I stayed home most of the time.When they told me I would have a stoma I was shocked and I definitely didn’t want it. 
Then I decided the ghoul had to go so the bag aka Whoopi was installed. 
I did more travelling, ate out and just really enjoyed the freedom that little bag gave me. 
Now I’m back to being a toilet hugger if this doesn’t settle I am up for a new stoma asap 

We are all different and I can understand fully that you want normality back. I really hope that they can help you 

I was told that you can grow a new rectum. Like stretching a stomach. But how can you do that when the output fires out like a hose. 
Well that enough talk about  

Take care. Keep talking here if it helps.
I don’t shut up. but it works for me. 

x

Hello again nothappyanymore 

Dr Ana Wilson is a true expert. St Mark’s is the tops. But waiting is a bit frustrating. And I don’t believe it’s ever too late to improve. I was there yesterday, and even after getting on for two years after to reversal, they’re convinced I can improve!

So please be patient. Meanwhile, look up the websites and see if you can try some of their ideas. They’ve seen how we can retrain our bodies if we persist. 

i am 58 now so not so young , i am on sertraline and was put on nortriptyline  by dr wilson , so dont know if thats the same as serotonin ?

Haha. I’m 67 and that’s officially an OAP. and I’ve got the silver hair to go with it. 
I don’t know about the meds it sounds similar but you could look up to make sure that your getting all the vitamins you need. I definitely am not. It’s not there long enough to do anything 

I read your bio you had a tough time. I had a concern with mine too A fistula loomed. We will see if it causes issues if it does I’m on the bag for life list now. 
I hope you don’t think me flippant I am just made that way and wouldn’t want to offend. Some find me fun others DONT! 
Did I read that you were all done in ten months.?That’s pretty good going 

I hope you have a better day today. 
Take care 

Hi again nothappyanymore

It’s terrific that you’re on the books at St Mark’s. The Holy Grail of LARS. I’m also a good deal older than you!

Dr Wilson also prescribed Nortriptyline for me, but at a low dose to help control phantom urges, one that’s too low to help with depression. You might want to check your dose, and discuss a more appropriate level if you’d like medication to help with other symptoms.  

A course of CBT has been really helpful. I was both anxious and depressed. While I still get low, the course made a huge difference. 

Finally, my body can cope with nuts. On the basis that smooth peanut butter is on the list of acceptable foods, I chew well to grind them up before I swallow. 

Hi Wellspring 

I have a nut allergy so thats off the menu , I have ask for a face to face appointment on the 21st with Dr Wilson rather than a phone call but no luck there , i am meant to be seeing the biofeedback team but all they do is cancel my appointment and re-book it 3 months further down the line 

Hi again. Sorry about the nuts. The biofeedback team are really worth seeing and I hope that Dr Wilson will be able to help you get an earlier appointment. I never met her, but my two sessions on the phone were very helpful, and I trust you will be able to make progress, even if you can’t see her in person. 

I wanted to add something here that may help others. It’s not to do with LARS and I have commented about it another post but I thought others going through a reversal may benefit from my experience 

Day ten

After having my reversal i was due to have my staples removed by a nurse at my doctors

The dressing was blood soaked and had been changed by a district nurse four days before. The nurse looked aghast when she removed the dressing and called for the doctor. Another nurse and a doctor followed at this stage I felt like a scene from Alien where John Hurt is on the table whilst others looked on as an alien popped out from his belly

The doctor said that I needed to go to A&E and have an Ultrasound and prepare for an overnight stay within twelve hours !

I’ll  cut this short and leave out my packing a bag and going to my local hospital reluctantly being sent to surgical as the op was performed in another place. 

I was seen by my surgeon in another hospital entirely as he was holding clinic

The out come

I have a hole where the stoma was that has to heal from the inside out. It has to be dressed and left to slowly repair 

unfortunately my surgeries nurses don’t do dressings!!
But that’s not important I just want others here to be aware that this happens. 

Did cause my blood pressure to go up to off the charts. The red alarm was flashing!

Dear Artsie

You really do seem to have some bad luck with your care. It seems pretty standard to come home from reversal with this open wound that takes around 6 weeks to close up. For the first couple of weeks the district nurses changed my dressing every day. The spacing gradually lengthened until I was pronounced “closed”. 

I very much hope that you’re now able to organise your care so it fits your needs. Well cared-for, the wound should heal well and be less susceptible to hernias.