A week of eating

With the result of my latest scope being that all the ulcers are gone and my gut looks fine, I decided to reduce my modulen to 300g (from 400g) daily and make up the remaining 500~ calories with real food. For the last week, I have been eating small meals of (low residue/low fibre) solid food in the evening. I’ve also had a few small things at lunchtime but not every day. I haven’t had any issues from any of my food but I am aware I need to be mindful of the amount of food I eat at once because I’m quite sure my stomach has shrunk a bit.

I’m seeing my dietitian in a couple of weeks and I’m hoping that she’ll take me off the modulen completely. I’m also seeing another GI (not my usual) at the same time. This GI specialises in Crohn’s so I’m not sure why I’m seeing him as all my results have come back negative for that. My guess is that he might have a better idea of what might have caused the ulcers? I honestly don’t know but I’ll update after I’ve spoken to him.

Scope Day

I had my flexi this morning. Everything looks normal, no ulcers or signs of inflammation. I’m continuing on the modulen for now but I’m hoping to talk to my dietitian soon and start back on solid foods. I’m still having small amounts of soft foods every now and then as I’m not having any symptoms but I don’t want to overdo it so it’s mostly just yogurt or mashed potato.

Flexi appointment soon

I’ve got my follow-up flexisigmoidoscopy booked for about two weeks time. Seeing as the biopsies they took when I was in hospital showed nothing, I’m doubting new biopsies will show much either. However, this scope should show if the inflammation has gone/reduced from my small bowel.

I’m still taking the modulen daily – and will be at least until I have my scope – but this weekend I decided to have a break; I’m only having half my usual amount (200g), with yogurts and soup making up the remaining calories (sort of). I’ve found I can handle small amounts of soft food (mashed potato, banana, ect) as well as some solid foods (I’ve had a few prawn crackers and some mozzarella sticks with no side effects). I hope this means I’m getting better and that I can start to introduce solids more regularly soon.

In other news, as some of you may know, I have pet rats. Unfortunately, one of my older girls had to be put to sleep last night as she was really poorly. Her sister is pretty upset with us so we’re giving her some space but keeping an eye one her at the same time.

Biopsy result

I have finally had my biopsy results; it turns out they have no idea what has caused the inflammation in my small bowel. No signs of Crohn’s, (which is great, by the way. One auto-immune disease is enough) but also no signs of infection either. They literally said they have “no clue what has caused the inflammation”. They want to see me again for another flexi in about a month so maybe they’ll find something then.

For now, I’m still on the modulen. I’m awaiting a prescription of it which apparently can take over a week as it’s not something a pharmacy would stock. I’m going to try and have small amounts of soft foods like yoghurt or mashed banana or potato for a few days to see how my gut handles it. So far, it’s been fine with smashed potato, and I had some banana last night which also went through me fine. I’m going to take it slow and only have it in the evening. That way, if my gut does protests, I’ll be at home where I can deal with it and not at work where I can’t.

Considering how quickly I responded to the antibiotics, I didn’t think it was Crohn’s (and nor did my GI or surgeon) but as there is no sign of infection, it does make me wonder what on earth my gut is playing at. It’s very frustrating.

I was asked how I deal with the mental side of having Ulcerative Colitis

I struggled a lot to begin with because I didn’t really know what this disease was and how best to deal the symptoms. I was on and off loads of different meds and nothing really worked, and I felt I was slowly getting worse (because I was). And I wouldn’t have survived through it if it hadn’t been for the amazing support my partner has given me. He was there with me when my symptoms became enough to go to the doctor, when I got my diagnosis, through my first A&E visit and subsequent hospital stay, he even did his own research about my condition and has always been there for me. Not once has he not been there. He is my rock. I think that, above all else, has helped me deal with this disease. I also have an amazing IBD team at the hospital who have taken amazing care of me the last three years too.

I did take a bit of a hit after my first surgery and I ended up going to see a psychiatrist. At first, she wasn’t convinced that I needed to be there but once I started opening up, she helped me get through my jumbled thoughts and feelings. I started keeping a diary of all the instanced where things had become too much and I had disassociated or had dark thoughts and I felt a small wave of relief when I started to put those thoughts down on paper. No one reads it, it will forever remain private, but I know it’s there. It’s my “lockbox” for all those negative feelings.

I think the best thing to do is talk to someone. I went to therapy because I knew a trained stranger would know what questions to ask and how best to probe the answers from me in order to help without doing more damage. That’s not for everyone though, so it’s important to find the right person to talk to.

We go through the stages of grief when we are chronically ill because we mourn the life we had before we were ill. It’s also important to let that run it’s course.

Thank you HaveYouHeardOfSarcasm on Tumblr for asking this.

Day 8 on Modulen

It’s been eight days since I started the modulen nutrition drinks and it’s not been easy. I thought I wouldn’t care about not eating sandwiches or pizza and that I wouldn’t mind smelling all these foods that I can’t eat, but I was very much mistaken; the smell of cooking roast dinners or take aways is almost torture sometimes because I want so badly to eat it but I know that if I do, I’ll be back in the hospital again in no time. Because part of my small bowel has narrowed due to inflammation (a stricture), I can’t handle solids moving through my gut at the moment. Other than the modulen, I have been able to handle soup but I don’t want to try anything more substantial without guidance from my dietitian and GI. I’m hoping to see one or the other next week (my biopsy results should be back by then) but I haven’t received an appointment yet so I may have to call them midweek to find out what I’m meant to do once my modulen runs out. I hope I won’t be continued on it (or any other nutrition drinks for that matter) and that they’ll say a free-fluids diet for a few weeks. I know I can handle soup without experiencing any pain or other symptoms so fingers crossed.

World IBD Day

Today is World IBD Day and I wanted to share a few things (treatments, symptoms ect) about living with IBD that I have personally experienced.

Symptoms of IBD that I have had include stomach cramps, fatigue, diarrhoea, constipation, weight loss, partial blockages of the small bowel, dehydration, blood in my stool and muscular cramps in the abdomen. I haven’t had all these symptoms at once (thankfully) but I have experienced them all in some capacity and in various combinations.

Treatments I have tried for my IBD include a lot of medications as well as surgery. I have been on anti inflammatory (mesalazine), steroids (prednisolone), immuno-suppressants (azathioprine, mercaptopurine & infliximab), anti-ulcer (omeprazole), antibiotics (co-trimoxazol), meds for bile salt malabsorbtion (colesevelam), as well as vitamin/mineral supplements (folic acid, adcal-d3 & colecalciferol). I have also been on fortisip nutrient drinks and (as of this week) modulen which is a complete nutritional replacement drink.

Other treatments (for lack of a better term) would be surgery. I had my colon removed about two years ago and a temporary end ileostomy (stoma) placed. Although many would assume this has “cured” me of my Ulcerative Colitis, removal of the affected organ sadly does not cure an auto-immune disease.

Side effects of these many treatments are numerous. From the medication alone I suffered with bloating, insomnia, loss/increase of appetite and weight gain/loss. The surgeries came with there own set of side effects which included muscle spasms in my rectum and abdomen, partial blockages of my small bowel, strictures (narrowing of the gut) and ulcers from infection. I also suffered with a case of ileus which is when the muscles that move food through the gut slow down, causing the bowel to effectively stop working for a time. This happened after my second surgery to form my j-pouch and took about three-four weeks to heal. Treatments for it included an NG-tube (a thin tube that goes in through the nose and down the oesophagus into the stomach to extract food and other waste that can’t move into the small intestine), and TPN (Total Parenteral Nutrition – another form of liquid nutrition that is fed via a PICC line (Peripherally Inserted Central Catheter) that goes in through a main line in the upper arm and ends somewhere near the heart).

I think out of all the things I listed here, ileus was the worst. It came on suddenly after surgery and meant I wasn’t allowed food for almost a month. It started with vomiting and my stoma stopped working (meaning nothing was passing through my gut). This is when they inserted the NG tube. They had to replace it once but it stayed in for about two weeks to clear out my stomach. In the meantime, they inserted the PICC line (which can be left for several weeks or even months) and started me on TPN. Eventually, when the NG tube wasn’t bringing anything else up, they removed it and after a couple of days, allowed me to try soup. When that stayed down, I was allowed to try soft foods and, eventually, I was back on normal diet and discharged from hospital after almost four weeks. This is the longest I’ve had to stay in hospital and I hope to never experience it again.

So, there you go. I know it’s a long post but I thought it would be worth sharing as people so often underestimate the impact of IBD on a patients life.

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.

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.