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Posted 9/8/2021 2:09 PM (GMT 0)
Some of you may remember me as that English person with the chip on their shoulder about surgery. Well, I apologise. I didn't realise quite how awful rectal disease was until I lived with it for a few years. I'd had Crohn's for years of course, but it "spared my rectum", as the medical terminology puts it. In many ways I was extremely ill because my disease was systemic and severe, plus I had a stricture and numerous partial obstructions, but at least I didn't have godawful, hideous urgency and tenesmus twenty million times a day. Combined with concentrated sulphuric acid levels of butt burning if I forgot to take a single dose of Questran.

Anyway, I had surgery in 2013 to remove my colon. Had a stoma for 2.5 years, then got it reversed. 'Cos of Crohn's I wasn't eligible for a j-pouch, so my surgeon simply hooked my ileum to my rectum. Depressingly predictably, the disease moved into my rectum. Nothing has helped - predfoam, mesalazine suppositories (which I couldn't tolerate and quickly stopped), two biologics (Entyvio and Stelara). And a few weeks ago I reached the end of my tether. The snapping point was when I was now getting up anything from 2-5x a night to go the toilet. At least before I'd been able to sleep through the night. It was bad quality sleep, but now I was getting bad quality sleep that was constantly being interrupted. I couldn't take it. Told my new GI I wanted to see a surgeon. Don't think she especially approved, but she agreed to refer me.

Saw the surgeon a few weeks ago. I had no idea what to expect to be honest. During the UK's first lockdown the NHS basically shut up shop and all non-emergency operations were put on hold. My mum's friend's lung tumour was ignored for a year. (Thankfully they have finally operated and it is hopefully all gone.) I wasn't sure if the surgeon would consider my case or not, but he did. In fact he seemed to be quite sympathetic to it. He wasn't my original surgeon who did my first two surgeries. She's apparently still there, but I decided to stay with this one because he does keyhole surgery which the other one doesn't, and if I can avoid having my stomach sliced open for a third time that would be quite nice.

So yeah, now I'm on a waiting list for surgery and I'm terrified every time I think about it. For every time I am calm and believe I am doing the right thing, there's at least three times when I wonder if I am making a terrible mistake. FFS. Three surgeries in, and the anxiety doesn't get any better.

Thing is, I had a stoma for two and a half years and while I hated the stoma for the first year, it did eventually get to a point where it was the closest thing to a pre-Crohn's life I had known. However, I am dreading the lengthy recovery all over again (even with keyhole surgery, it will still take a long time for the bowels to relearn their new plumbing). I am also fearful about being dependent on ostomy supplies. That particular fear has not only not gone away, it's intensified against a background of supply chains disruptions in the UK. But since my reversal surgery I've managed to build a collection of new fears, including homelessness and poverty, and, well, there's only so many existential crises you can have at once. If the supply chains collapse, they collapse. Nothing I can do about it.

I'm also worried about possible complications, the new stoma not working as well as the old one, the Crohn's returning in the small bowel, etc.

On the other hand if I do nothing at all, then there will never be any improvement. I put up with it for a few years, but it is seriously starting to grind me down. I know I don't have fistulas, or any other markers of severe disease, but that is of little consolation when you're still chained to the toilet and in pain.

Anyway, wish me luck folks. No date yet, but it'll probably be November or December. Barring Covid of course, but vaccination has (sort of) got that under control for the moment.

PS: I'm also looking for a new (used) car and that is totally doing my head in as well. I'm not rich enough to do leasing and the price of used cars has gone through the roof sad

Post Edited (NiceCupOfTea) : 9/8/2021 8:14:27 AM (GMT-6)

Posted 9/8/2021 2:50 PM (GMT 0)
Dear NCOT I love your british humour, I grew up and still have family in the UK so I can empathise fully with your experience with the NHS.
I wish you every success with your upcoming surgery. I agree, even though it is daunting, you have to change something or nothing will change.
Are they doing anything with stem cell transplants for crohns in the UK? They were trialling it in belgium (leuven) and the netherlands (utrecht). Apparently in at least half of patients they had a total "re-set" of their immune system, i.e. no more crohns symptoms, but due to the risky nature of the procedure, which basically involves strong chemotherapy which wipes their immune system and leaves patients highly vulnerable to infection, so they have to spend weeks in isolation units at the hospital, it's reserved for the most severe forms of crohns disease.
Posted 9/8/2021 3:20 PM (GMT 0)
NCOT,

I remember you and I would go at it over surgery/stoma. I'm glad that you've come to terms with a stoma. At the end of the day you need to feel healthy. Living with a diseased intestine is horrible. You don't realize how much it is affecting you until you have it fixed (removed). I remember waking up from surgery and just feeling so much better, I was at the point of begging for surgery because I was so sick. My GI told me prior to surgery that you wake up and feel like the monster has been removed from your body -- he was correct. I'm still taking medicine so it wasn't the outcome that I had hoped for but I've been able to live a better life because of surgery. Now if these antivaxxer/freedumb idiots would just take their vaccines we could all go about living our regularly scheduled lives.
Posted 9/8/2021 3:28 PM (GMT 0)
ks1905: This thread is not about antivaxxers.
Posted 9/8/2021 4:36 PM (GMT 0)
Good luck NCOT! I wish you the best possible outcome. Yes the idea of any surgery is daunting and anxiety producing.

I don’t know if you practice yoga or meditation but it might be a good time to start. I was feeling quite anxious the other day awaiting covid test results ( thankfully negative) and hyperventilating a little and a nice relaxing (emphasis on relaxing! Some routines can be quite strenuous!) yoga session really helped with that.

Keep us updated! You have definitely been through the ringer and deserve some relief!
Posted 9/8/2021 4:50 PM (GMT 0)
NCOT...you've been through hell, and I'm happy for you to have made the decision for surgery.
Welcome back!

Hugs,
q
Posted 9/8/2021 8:00 PM (GMT 0)
Best wishes for a resolution ASAP to your tenesmus, etc., NCOT. Hopefully you can get an opinion from Notsosickly Girl [Notso], a moderator here who is conversant on mucosal-stripping of rectum procedures. (U.S.) I say this having read some of her pertinent advice RE surgery in past threads by other members here experiencing complications. Did your docs ever Rx the mesalamine foam for you? I read your comment RE mes. suppositories not helping which didn't surprise me, but in past member threads from UK & Australia UCers have reported major help from the mesalamine foam toward healing rectum. Of course, Crohn's in rectum would likely present harder to treat. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 9/8/2021 8:27 PM (GMT 0)
Hello from a fellow Brit. Just wondering if you have any alternatives you haven’t tried yet (assume you’ve done remicade or humira so maybe the anti-map antibiotics cocktail or a diet like ibd-aid/ scd?). Also whether the surgery would be permanent or if there is a chance of reversal again down the line if it becomes problematic or stunning new treatments appear.
I can’t imagine that staying with the status quo is an option, feel exhausted just thinking about it.
Surgery wise I have only had open surgery and would definitely choose keyhole if it was a possibility.
I’m not sure how much you might get messed around with cancellations- my sister works in a hospital and says the covid cases are steadily rising. I won’t start ranting about the government.
Good luck with it, and the car hunt.
Posted 9/8/2021 9:14 PM (GMT 0)
Ah yes the car thing... because there's a chip shortage there are delays in building new cars. People who would ordinarily buy a new car don't want to wait 4 months until it's ready, so then they go and buy a second hand car, which is sending the price of second hand cars up (more demand etc etc).
Posted 9/8/2021 9:39 PM (GMT 0)

poopydoop said...
Ah yes the car thing... because there's a chip shortage there are delays in building new cars. People who would ordinarily buy a new car don't want to wait 4 months until it's ready, so then they go and buy a second hand car, which is sending the price of second hand cars up (more demand etc etc).

I ordered a new car in April and I got an email two weeks ago that my car is going to be delayed in being built for another 8+ weeks because of the chip shortage. I won't see my new electric car until next year.

I had solar panels and batteries installed on my house in May and even bought an electric lawnmower. I was hoping that by now I would never have to stop at a petrol/gas station again. Stupid chip shortage.

Seems everything is backordered. NCOT, will your ostomy supplies be easy to get? Can they help you get supplies prior to your surgery - once it is booked?
Posted 9/9/2021 3:13 PM (GMT 0)
My mama always said "third time's the charm". May this one be your charm and you can get on with life (such as it is in these Covid days)

Good luck with your car shopping!!! Sometimes you can get a better deal with a new car. When the used car market has more demand than supply it can cause prices to really climb.
Posted 9/9/2021 3:15 PM (GMT 0)
P. S. Nice to see you here again!! I always think you have interesting things to say so you have been missed.
Posted 9/9/2021 4:18 PM (GMT 0)
Hi NCOT. Wishing you the best possible outcome with your upcoming surgery and relief from your suffering. You deserve to feel well.
Posted 9/9/2021 4:40 PM (GMT 0)
I will echo that sentiment - nice to see you again NCOT and wishing all the best for you.
Posted 9/10/2021 2:24 PM (GMT 0)

NiceCupOfTea said...
Anyway, wish me luck folks. No date yet, but it'll probably be November or December. Barring Covid of course, but vaccination has (sort of) got that under control for the moment.

PS: I'm also looking for a new (used) car and that is totally doing my head in as well. I'm not rich enough to do leasing and the price of used cars has gone through the roof

NCOT, I hear you on the problems with the NHS due to lockdown. I remember being 'abandoned' without care after coming out of hospital the week before the first lockdown.

I hope the surgery brings you some relief.

I just looked up used car prices - gulp - you used to be able to pick up a 12 year old VW Golf for a bargain!
Posted 9/11/2021 1:06 AM (GMT 0)
Tea. All positive prayers and thoughts going your way. Good luck. Be well
Posted 9/11/2021 3:52 AM (GMT 0)
NCOT,

I think that it's very normal to be anxious. This time around you probably have a different mind set. That will help you adjust quicker.

For me, the mind set helped how quickly I started trying to do things myself. I also think that since you once had a stoma that learning curve will be easier and you will be able to devote more of your energy to just getting better.

Before surgery I would check on if they could have someone come help you once a day or so for awhile.. When my last surgery incision opened up, and we decided to let it heal from the inside out, it helped that I had someone to help me.

On the car shopping...yikes!! Prices are thru the roof high.

Take care and please let us know how it goes. I have missed seeing you on here!

Clo
Posted 9/12/2021 4:19 PM (GMT 0)
Thanks for your replies, folks! I'm sorry I've been away for a few days; bit of a mental and physical struggle going on. Sadly I'm still not at peace, but at least I'm not actively wanting to kill my noisy neighbours or in pain right at the moment.

The last few days has been a benefit in one sense, in that it is pushing me more positively towards surgery. I really can't go on like this, I'll have even more of a mental breakdown than I'm already having.

@poopydoop - There was a clinical trial involving stem cell therapy and Crohn's; not sure how that's going. As far as I know, no hospital is offering it as a treatment, but even if it was I don't think I'd be eligible. My Crohn's isn't classed as severe anymore, so that's probably going to rule me out from experimental treatments, which in the past might have been a possibility. Also, post Covid, resetting my immune system to zero doesn't seem like such a great idea, even in a hospital setting. (Or, arguably, especially in a hospital setting given how many Covid infections have happened there. I know at least two people who got Covid in a hospital.)

@ks1905 - You were partly my inspiration for taking Stelara >_>. Don't worry, I don't hold it against you at all. I'd just seen how much you had been struggling with taking round after round of antibiotics which didn't seem to work for long. Then Stelara arrived and put you into a sustained remission. I was happy for you! I was hoping Stelara would work as well for me, but alas it was not be to be. (Ooh, I'm a poet and I know it.)

@Flowers Gal - I *really* should look into something like yoga. Mind, I've been saying that for years without actually doing it, but I suspect if I actually dragged myself to a yoga class it would help. Exercise does, and I'm similarly bad about doing that. Meditation I'm less sure about, if only because I spend too much time alone with my own thoughts and don't really want to spend any more time there. Think I'd rather try a yoga class first. I'll see what's on offer locally.

@quincy - You're the backbone of this place. I think the forum would simply collapse in on itself and disappear into a black hole if ever you left. Good to see you! :p

@Old Hat - Good to see you as well. Does notsosicklygirl still come here? She hasn't posted in this thread, which is a shame, as I'd have liked to have heard from her. I've heard of mucosa-stripping, but isn't that for j-pouch patients with rectal cuffs? My situation is different, I think, as I've still got my full rectum. I'm not really tempted to keep the rectum in any shape or form, as I'm bound to have continuing problems there plus there's a cancer risk. Not a high one in my case, but don't see any reason to run the risk at all if I'm never going to have another reversal.
As for mesalamine foam, no, never tried that. I took predfoam which I don't think really helped. I'll never try anything mesalmine related again, because of my severe intolerance to it in the past - I doubt that's gone away.

@Delta - I haven't tried the things you mentioned, although in the past I've been on liquid/elemental diets and a gluten-free diet. Haven't tried the SCD diet specifically, but honestly I don't have the motivation for following a diet at the moment. I've always thought with me that food didn't make much difference. Yeah, too much fibre or too much fat is bad, but it's not like if I cut those things out then I'm symptom-free: it's just not quite as bad. And for MAP, I considered trying anti-MAP therapy in the past, but nothing came of it. I just have a 'gut' feeling that diet, bacteria, etc. aren't the main problem in my case. I think the problem is largely structural now, e.g. I no longer have a colon to mediate between the small bowel and rectum, and that's gonna cause issues. If my bowels haven't adapted to their plumbing after six years, I think it's fairly safe to say they are never going to.

I'm dreading the possibility of cancellations, but it's a very real one. My hospital in a high Covid area too: it was one of the few places in the south to be subjected to a lockdown in the summer of 2020. My hospital has coped very well, from what I can tell, but it can't conjure up miracles. Yeah, I won't mention the government either, as my opinion of them is not really print-friendly.

@ks/poopy/etc. - The situation regarding used cars is a shocker. Went to my local Skoda dealership last week. The guys there were nice, but not terribly optimistic that it will get better soon - they gave a timeframe of 2 years. They said they would normally have around 50 used cars in stock, but at the moment they have 12. Even their cheapest cars were 10k. Had to leave it, as much as I wanted the 10k one (only 7k mileage!).

The timing couldn't be much worse. My current car is 20 years old. It's still going, but due for major work next year - the garage warned me of this when I took my car in for a service over the summer. I really don't want to pump loads of money into a failing car, but I'm going to have to pay extra for a used car now. It sucks, but I suppose I'm lucky to have the savings with which I can do so.

@CCinPA - Nice to see you too. Thank you for your kind words.

@Sara and Serenity - Thank you too!

@UCyousee - Spring 2020 could not have been a worse time to fall ill in the UK. For anyone. Knew one guy who was in agony due to a hernia (as in could not sleep or work due to the pain) and had to get the operation done privately. The only consolation is I think the NHS has learned from experience and won't shut down a second time. Not unless things get much, much worse. But while I think this winter will be a ****show, I don't think it will be a castastrophe - thanks mainly to vaccination.

@3timechamp - Thanks!

@clo - Thank you for your kind words. Yeah, I don't think the learning curve will be as steep this time. Not being brand new to a stoma should help with recovery. Especially as this time I will feel more like it's my choice, whereas the first time I had surgery I didn't really feel like I had a choice and was just much more resentful of the situation. This time I'm around I'm more like, "eh whatever." Chill. You know. The model of zen. Apart from when I'm not remotely chilled or zen >_>.

Okay, I'd better stop now. Take care everyone.
Posted 9/12/2021 7:08 PM (GMT 0)
NCOT, RE Notsosickly Girl [Notso]: she may be on vacation. I haven't seen posts of hers during the past 4-6 weeks, but I think she had commented in a thread on surgery by Andreita earlier this summer. You can start a new post with a heading addressed to her, or else post to Straydog & Michelejc to ask about Notso's whereabouts. (Straydog also moderates the Crohns forum on HW.) As I recall, Notso discussed the older procedure for mucosal-stripping that used to be a norm in U.S. reconnection surgery, not an "endgame"-- but she definitely contributed clarity to rectal segment issues, from what I've read here in the more recent past. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 9/12/2021 11:21 PM (GMT 0)
NCOT — there are lots of good yoga videos on YouTube. My favorite is Adrienne 30 days of yoga. They’re only 20-25 minutes long, free, not so vigorous, plus you can make a fool of yourself at home without anyone watching!

I’m not great at meditation either, but the goal is to stop your mind from thinking by concentrating on the mantra. Tons of free meditation apps too. Back in the day they used to just term them “relaxation” tapes! I get bored after about 10 minutes. It’s easier after a yoga session when my mind is in a tired, zen state anyway
Posted 9/13/2021 1:07 PM (GMT 0)

NiceCupOfTea said...

@ks/poopy/etc. - The situation regarding used cars is a shocker. Went to my local Skoda dealership last week. The guys there were nice, but not terribly optimistic that it will get better soon - they gave a timeframe of 2 years. They said they would normally have around 50 used cars in stock, but at the moment they have 12. Even their cheapest cars were 10k. Had to leave it, as much as I wanted the 10k one (only 7k mileage!).

The timing couldn't be much worse. My current car is 20 years old. It's still going, but due for major work next year - the garage warned me of this when I took my car in for a service over the summer. I really don't want to pump loads of money into a failing car, but I'm going to have to pay extra for a used car now. It sucks, but I suppose I'm lucky to have the savings with which I can do so.

NCOT,

I’m not sure about your situation and the situation on the other side of the pond but you should look at the total cost of ownership for the car and not just the purchase price. Hybrid/electric cars have lower maintenance costs than most internal combustion engines. They cost less to operate per km. Some require no oil or filter changes. My mother has a plug-in Toyota Prius and she gets about 130 miles per gallon. 4 years ago she paid about $22,000 for it and since it was a plug-in it qualified for a $2,000 credit from the state and I think she may have even got some money back from the federal government. Her car is very safe so her insurance rates low too.

With the way things are in the car market right now my mother could probably sell her car for almost what she paid for it. I think she has about 18,000 miles on it. So if she sold her car today her cost of ownership would have been very minimal for those 4 years.
Posted 9/16/2021 1:35 AM (GMT 0)
Woohoo, NCOT! Right now one can see that Notsosicklygirl has signed on with HW. / Old Hat (just FYI)
Posted 9/16/2021 2:28 AM (GMT 0)

ks1905 said...
My GI told me prior to surgery that you wake up and feel like the monster has been removed from your body -- he was correct.

Yes! Had my surgery late June and when I woke up the next day, I felt so much better and healthier and like this toxic thing had just been removed.
Posted 9/16/2021 7:15 AM (GMT 0)
Hello, sorry I haven't been around, I've been so busy with work lately. I miss the days of being able to spend time doing what I want instead of doing what I need to do to survive... I guess, on the positive, I am well enough to spend my time working, so that's got to be a good thing!

I am happy to hear you're taking a step to improve your life. You've struggled for way too long and you deserve to be comfortable and happy. I know a stoma was never the dream, but looking back, it did seem like maybe life was easier for you with one. We also all have fears and worries. I know I worry a lot about losing insurance, or losing my job, dependence on medication... It's normal to think about the what ifs. On the other hand, medical supplies are a necessity, and I think they will always be available. I am sure, over time, you will have a stock of them on hand and the worry will subside.

How is life otherwise? I hope everything is going well for you. I just had to get a used car and it was really difficult. Nothing is available and the prices are ridiculous. Did you find something? I know l people are trying to wait it out but who knows when this chip shortage will end. I used to lease a car though and it was 200 a month without a penny down. That was reasonable on my income 😋
Posted 9/16/2021 7:20 PM (GMT 0)
I pray it is the answer for you as it has been for so many!! Ostomy stigmas are a thing of the past.
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