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.

Intestinal colic

This is what they think I’ve got. It means severe pain that comes in waves, usually around the abdomen. Apparently, it’s caused by the muscles contracting in an attempt to move an obstruction.

At the moment, they’re still wanting to observe me but if things don’t improve soon, I’m assuming they’ll intervene with… something, I don’t know. There have been several mentions of operating but I really hope it doesn’t come to that. Apparently, this can go away on its own but, knowing my gut, I don’t think it will. At least, not quickly, anyway.

In hospital… again.

I was admitted via a&e last night with severe abdominal cramps and vomiting. They gave me morphine and have since put an NG tube up my nose and started me on IV fluids. They’ve done an xray and said it looks like a bowel obstruction. They’re observing me for now and keeping me on painkillers. I don’t know what the plan is so I guess I’ll just have to wait and see. There was talk of a CT scan or ultrasound but that was hours ago and I doubt it’ll get done today.

I’m so tired. I’m going to try and nap again before they decide to do anything else.

Another update

I’m going to home today! I’ve got two weeks of Modulen, to be assessed after that and potentially continue for a further four weeks, when I’ll have another flexi sigmoidoscopy to see if the ulcers have gone from my small intestine.

They still don’t know if it is Crohn’s or not but my GI is about 90% sure it’s not due to how suddenly it came on and how quickly I reacted to treatment. He said it’s “more likely to come back as inflammation of the small bowel”.

My dietitian said that if it comes back as not Crohn’s, then I can move onto Fortisip drinks instead. The liquid diet will be gentle on my gut as it heals while still giving me the daily nutrients I need.

Apparently, UK GPs don’t like non-Crohn’s patients being put onto Modulen because it is so expensive. That’s why she’s given me two weeks worth from the hospital so that they don’t need to involve my GP yet. Fortisip is cheaper and not specifically targeted at Crohn’s patients, so my GP shouldn’t mind doing a prescription for those if needed.

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.

I am home!

Sorry for the lack of updates the last few days, there hasn’t been much to report. But now, I am home. I have been signed off work for the next four weeks so I’ll have plenty of time to adjust and get used to my new “plumbing”.

So far, everything is going well but it’s early days. Hopefully, things will continue to go smoothly and I’ll have little to no issues with my j-pouch.

Seen the consultant this morning…

I’ve started passing tiny bits of gas the last couple of days, as well as green mucus, which the consultant is quite happy with. I’m being changed to free fluids and my PCA pain button will be reduced over the next day. They recon I will be home within forty-eight hours but, knowing my stomach, it’ll likely be longer.

I’m trying to stay positive though, so I’ll give myself until Wednesday next week. That’s when I think I’ll be well enough to go home. If it’s earlier though, great!

Well, that’s annoying.

I arrived at the hospital this morning at seven thirty with my partner and mum. We sat in the waiting room of the Surgical Day Unit for about an hour before I was taken through to see the anaesthetist. I then saw my surgeon to sign the consent form and he informs me I am second on the list. Great, so I shouldn’t be waiting too long, right?

Wrong. I was waiting until about half past three when the booking manager comes over and tell me there has been an emergency and they have to cancel my appointment. Frustrating but I completely understand; no one can predict an emergency.

We got home shortly after this and about an hour later I got some good news; they’ve got a new date in two weeks time.

I won’t deny I was annoyed about having to go home without having had my surgery, but I can’t blame the hospital, my surgeon or the emergency patient. This sort of thing happens and getting angry won’t solve anything. I’m just glad I’ve got a new date so soon.

Ask

@thoughtsfromtheam asked,

“Do you mind me asking what surgery you will be having? I had my large intestine taken out in 2015, then had a colostomy while it healed for 6 weeks, then had it taken down. Is that similar to what you are having done. I have a J-Pouch now.”

Firstly, no of course I don’t mind you asking. I am very open about this and am happy to answer questions if I can.

Secondly, yes. I had my colon removed in April 2017 resulting in an end ileostomy. I then had my j-pouch formed with a loop ileostomy in June 2018 and am currently waiting to have that taken down. I hope this was helpful.

And then they cancel…

Ok, so three days ago, I was given a date for my surgery for next week. Yesterday they cancelled. As annoying as this is though, I can’t fault the hospital; cancer patients take priority and my slot was needed so I’m not that annoyed, not really. I don’t know how long it’ll now be until I have another date but at least this way I’ll have more time to get used to the idea of impending surgery.