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PET CT, capsule endoscopy, what next?

Hi everyone, thank you for sticking with me this year. I know I’ve ive not been very active lately but there is a reason for that.

About 6 or so months ago, I started getting a stabbing pain near my defunct jpouch after eating dinner. It would suddenly come on but fade after a couple of minutes. Then is started happening more often and moving forward in my pelvis as though I was having period cramps. From there, it felt like it was moving up towards my stoma. This continued on and off for a few weeks until it was happening almost constantly. The pain got so bad that I was unable to stand for periods, and my hot water bottle was my constant companion. This last week it sort of came to a head and I’ve had to take a few days off work.

So what have I don’t to help? Well, first I contacted my IBD team. They were kind of stumped as to what might be causing my pain so referred me to my surgical consultant. Via his secretary, I was able to describe my pain and arrange a phone call with him (which’ll be tomorrow). In the mean time, he ordered an abdominal and pelvic PET CT scan, something I’ve not had before but is almost identical from the patient point of view as a regular CT scan. PET scans show how well organs and other body parts are working, not just what they look like (which is what a regular CT would show).

As well as that, my GI had requested a capsule endoscopy which involves me swallowing a capsule that contains tech that will send data (presumably images among other things) to a transmitter that I will wear for around 24hours. This should give him a better idea of what the inside of my gut looks like as the ileoscopy I had a few months ago didn’t get more than 15inches in before having to abort. (An ileoscopy is just what it sounds like: a scope of my small intestine via my stoma).

I have taken what’s called a “patency capsule” yesterday which is a “dummy” capsule that will devolve in my gut if I don’t pass it in 24hours. It’s purpose is to make sure the real capsule will pass safely through me and not cause an obstruction. I have an xray later today to check it’s progress and the real capsule will be next week.

What does all this mean? Well, I’m not sure, to be honest. I’m sort of in limbo right know as I don’t know what’s causing my pain, and my GI is not convinced I don’t have Crohns; he’s wondering if my initial diagnosis of ulcerative Colitis was infact incorrect (it might explain a few things…)

Now, obviously I don’t want there to be something wrong, but at least if there is, it means they can fix it. Not knowing what’s causing this pain is infuriating as it means there’s nothing to treat and I’m stuck as I am. I just want answers.

Thanks for reading. I hope you are all doing well and keeping safe.

Dietitian’s know what they’re talking about, right? (TMI warning)

I saw the dietitian early last week and it turns out my sodium is super low. She recommended I start drinking 1 litre of the St Mark’s rehydration solution daily and 1 litre of other free fluids. She also said I need to start reintroducing fruit and veg and gave me some info on how best to do so. She recommended tinned fruit as a good alternative to fresh fruit as it’s softer and has already skinned, so I bought some tinned fruit to try.

A few days after seeing her, I tried having a few bits of tinned apple and mango. It went through me fine but my output for that afternoon was near solid so it ended up pancaking in the bag and almost caused a leak at work. Thankfully, I had my emergency kit with me so I could change in the toilet. I left it another couple of days before trying the apple again (leaving out the mango because I thought this was a bit too physically fiberous for me), but once again, I pancaked and had to change at work. Since then, I’ve stuck to banana’s and smoothies because I don’t want to risk another leak, especially if I’m not at home. I’m also going to start taking mutlivitimans daily and try to have fruit smoothies more often. I know I can eat carrots and potatoes when they are peeled and cooked well so I’ll be doing that too.

I know the fruit didn’t cause a blockage but it could have done and I’m so scared of being hospitalised again. I feel as a medically trained dietitian who’s working with new and veteran ostomates, she should know more about how certain foods effect the stoma output as well as the intestines. If I was brand new to having a stoma, I’d have followed her advise and probably be dealing with leaks if not a full-on blockage. I’ll be sure to let her know of the outcome of her advise when I see again early next year. (Don’t worry, I’ll be nice.)

Halloween!

I love Halloween. I love it for the decorations, the costumes, but most of all, I love it for the sweets. Yes, the sweets. (I know, I’m a big kid really). But seriously, there is a practical reason for my eating many sweets; slowing down stoma output without having to take medication.

Recently, I have had fairly loose output which is a bit of a pain because it can mean the bag filling faster than normal. Eating sweets, particularly ones with gelatin in, can help thicken the output and slow it down. Halloween is a great time to stock up because not only is there a much higher supply in shops, but they can be a bit cheaper. Now, obviously, I’m not saying everyone should gourge themselves on sweets (I’m no doctor but I’m pretty sure that’s not good for you, even for ostomates) but this is just how I like to deal with high and loose output. How do you deal with loose output?

So, my plan for tonight are to eat Chinese take away followed by a load of sweets whilst watching Coraline. What are you up to this Halloween?

Coffee Morning!

I went to a Crohn’s & Colitis UK coffee morning today with my mum. It was good to meet new people, we talked a lot but there’s never enough time to speak to everyone. I hope to go to the next one near me though. I met someone who has had a jpouch for around ten years now, and I spoke to someone who came with their mum (like me) and who both have Crohn’s. A couple of them were also at the IBD open day last weekend too. I’ve always thought that these meet-ups are a good idea, they give you somewhere to talk freely and feel safe, as well as being part of a community that understands and doesn’t judge because they’ve been there. I know they’re not for everyone but I enjoy it.

In other news, I saw my surgeon last week and he’s very happy with how I’m doing. He said he doesn’t want to do anything now for at least another year, which is fine by me (two surgeries is more than enough for this year, thank you very much). He said I’ve got three options though; 1) I can have my stoma closed and try the jpouch again, 2) I can have my jpouch & rectum removed, a permanent end ileostomy formed and have a barbie-butt, or, 3) I can stay as I am with jpouch & rectum intact and loop-ileostomy. I am quite content to stay as I am for now, but eventually, I will want to go for option 2; permanent stoma and barbie-butt. I don’t want to go back to the jpouch because not only is it ulcerated, but I still have the perforation near the entrance, both of which make me not want to risk it failing again and having to have yet another surgery. I could stay as I am indefinitely but I think I’ll always feel like it’s not finished and I just want this to be sorted once and for all.

So, that’s it for now. Work is going well and I feel able to do more things and for longer. My appetite has returned with avengence so I’m eating like a horse at the moment. My weight is very slowly increasing so all good from where I’m sitting.

Recovery update

It has been five days since my surgery and I think I am healing fairly well.

My pain is being well controlled by the PCA but it has been reduced to just morphine without the ketamine, with a low dose of morphine running in the background. They removed the rectus sheaths (anaesthetic being pumped directly into the wound) yesterday as one had broken and was leaking and the other wasn’t doing much either. They’re only meant to be in for three to four days anyway.

I’ve still got my cathatar in, which I suspect will stay in until I’m moving more freely. The drain is due out today, with the NG tube coming out tomorrow. And my diet has been upgraded to clear fluids.

I am feeling a lot more comfortable today and I’m even able to get out of bed, with little assistance. My hope is to start going for short walks to build up my strength.

Surgery update (in rant form. Sorry)

On Saturday, I had what’s called an EUA, or endoscopy under anaesthetic, in order to see what was going on in my jpouch. It showed the entrance was narrowed by a stricture and there was some liquid in it so they inserted a drain. The doctor who performed it tried to stretch the stricture with his finger (I didn’t know this until later).

Afterwards, all seemed fine for a bit until I started getting pains in my lower abdomen and near my rectum/pelvic floor. As it turns out, when try to stretch the stricture, the doctor had accidentally created a hole in my pouch and there is now an infection in the cavity behind it (to say my surgeon was not happy about this would be an understatement). “Fortunately”, the drain had gone through the hole as well and was trying to drain the waste that has leaked through. It was painful but they couldn’t do anything until the next day (Tuesday) at the earliest.

The plan, as far as I knew it, was to have an EUA so my surgeon could assess the damage. Once this was done I’d then have surgery to have a permanent stoma put in. I was told that I’d have the EUA this morning (Wednesday) and then the stoma surgery this afternoon.

That hasn’t happened. It turns out there was some miscommunication between my surgeon and another Dr. What is actually happening is my surgeon is performing the EAU this afternoon and I am last on his list. Fine. The stoma surgery will be scheduled for later this week, most likely.

What was said would happen but hasn’t (by the other Dr) is that I was first on the list to have the EUA and that it “didn’t matter” if the drain had fallen out this morning (which it did but hasn’t caused any issues). There was no mention of when the stoma surgery would be, only that they might not even have to do it. (My surgeon has already said going back to a stoma would be what’s best for me at this point).

I am struggling now as I’ve done nothing but lay around and wait for someone to take me for a test or scan or tell me some results. It’s tiring and I’m fed up. I want this fixed so I can go home and continue living.

Bad-ish news

I had another CT scan today and it showed two things; 1) my bladder had a litre of liquid in it that I didn’t feel, resulting in me having a cathatar inserted. It immediately drained about half so it’s clear I need it.

The second thing it showed was a hole in my jpouch where intestinal waste has leaked into my abdominal cavity. The drain that was placed into my pouch yesterday has now gone through that hole and is draining as much as possible but itse still quite painful. The doctors have put me onto their surgical list for tomorrow to remove the pouch and give me a permanent stoma.

This is quite a bit to process and I haven’t really talked to anyone about it much. I will do my best to absorb this overnight but I don’t think I’m going to sleep too well tonight.

Small Achievements #1

I was able to stand up with little to no assistance.

For context, I’ve had a procedure that involved putting me under anaesthetic and performing a pouchoscopy (a scope of my jpouch) and placing a cathatar into my pouch so what is currently trapped in there can drain. The opening to my pouch is so inflamed, it’s practically closed, resulting in me not having passed ANYTHING for over a week now. It has been excruciatingly painful and my stomach has been very distended. This meant I could barely leave my bed without freezing in pain at every movement, let alone standing and walking.

I’m by no means healed but I am comfortable, at least, so healing should follow soon.

Hospital update

I spoke to both my GI and surgeon yesterday and my GI again today; they’re still not sure what this is. My stool test came back negative for infection which has left them a bit baffled as to why I’m responding to the IV antibiotics. They suspect it could be Crohn’s but they won’t know until my biopsy results are back.

So, the plan for now is to stop the antibiotics and observe while starting me on modulen tomorrow. If, like me, you have never heard of it, modulen is a nutrition replacement drink that comes in powder form. It’s used to treat children with Crohn’s but they have started giving it to adults more as well. It’s apparently good for small bowel inflammation and most people use it for a few months to give their bowel a rest.

Currently, I am on Fortisip drinks for the rest of today but I don’t know if I’ll have anything else. I had cheesey potato and leek soup earlier and ice cream but I have a feeling I won’t get that again this evening.

Hopefully, I’ll fine out more tomorrow.

Travelling with a J-Pouch part 2

As mentioned in my previous post, I travelled for around 5 hours on several trains to visit my sister earlier last week. The outward journey was fine with no issues when it came to needing the bathroom. The home-bound journey, however, was a little different because at the halfway point I started getting spasms. Thankfully, I was able to hold off needing to “go” until we reached London Waterloo station where we had about a 4omin wait for our train.

Ah, the Waterloo toilets. Another thing I wanted to mention in this post as they have… changed. Don’t get me wrong, not having to hunt through pocket fluff for 20p in order to do your business is wonderful, especially for people with IBD and similar conditions, but I can’t help but notice that the cleanliness of these toilets has dropped somewhat. There was a very strong smell as you approached that only got worse when you got inside, and they just seemed generally unclean. There was signage mentioning a plumbing issue so maybe that was the reason? I don’t travel to London enough to know but I do hope they can sort out whatever issues they are having and return the facilities to a more appealing state. I realise my complaints may seem a bit superficial but I am genuinely concerned about the spreading of infections like c.diff. I do not want to get that again as it was one of the reasons my colon had to be removed, and I don’t want to risk my jpouch failing.

On a lighter note, it seems that Nottingham has embraced Crohn’s & Colitis UK’s “Not Every Disability is Visible” campaign by putting up signage on all of their accessible rest rooms (or at least all the ones I saw anyway). I’ve started taking pictures of the supportive signs when I can so I can spread awareness on my instagram. It always makes me smile when I see the new signs.