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First, a bit of an introduction.
My name is Daniel. I am a 32 yr old male, who is currently under investigation for IBD (undiagnosed). I have been reading these forums for quite a while since everything started, but feel that I need some additional support and advice going forward.
Ok, where to begin...
I've never really suffered from any ailments during my life so far, but on the 1st of June this year, I came home from work and noticed a burning sensation in my lower right abdomen, around my hip area. This feels like a tugging/tightness.
I started to panic and get a bit anxious. I tried to take my mind off it by sitting at my computer, but all of a sudden, this massive head rush hit me - Like a feeling of being flushed. My hands and feet started sweating quite badly and I just lost it.
All of this followed with weakness, extreme nausea, loss of appetite etc.
I won't go into much detail about the NHS proceedings, as i'm sure most of you are aware i'd be writing a bible here, as you're thrown from pillar to post without much help, but to keep a long story short:
- Eventually got sent to the surgical assessment unit on the 6th of June with suspected appendicitis. Got blood work done and also abdominal x-ray. Nothing found. Got sent home and told that it might just be a virus and to wait it out.
- The following week (11th to 15th), I appeared to be making a recovery. My appetite eventually came back, I felt good, but my abdominal tightness was still present, although not causing any issue. I just assumed that it probably is viral and it would pass.
- Next, everything changed again. By Saturday the 16th, I started to lose my appetite again. Next day on Sunday I felt like I was back to square 1 again. Everything came rushing back. All my symptoms.
I spent the following weeks having a lot of time off work.
I got weak and started losing weight. I used to sit around high 14stone, verging on 15, but I dropped to 13 1/2 in the space of 2 weeks.
My diet was always VERY high fat content. Meat (red), cheese, sugar mostly. It wouldn't be unusual for me to consume more than 3000 calories a day, but my weight always stuck to the same high 14's. Now, I am struggling to maintain it.
On the 29th of June, I was back at the surgical assessment again. The usual blood work got done, but nothing found again. They got in contact with a gastro doctor and asked for his opinion. When they noticed my weight loss and dehydration, they advised that I be kept in overnight.
I was given 4x 500ml bags of fluid through IV and had to provide several stool samples. The next day, I was put onto a polymeric diet using Ensure Plus. What prompted them to do this is due to the fact my Calprotectin levels were raised at 130. I was then discharged and instructed to consume 8x bottles of Ensure Plus per day to meet my calorie needs, as well as resting my bowels for 6 - 8 weeks.
Now, here's my problem. Since being discharged, I have been struggling to take 8 bottles of Ensure because it seems to bloat me after having just one! It honestly feels like i've just eaten an entire meal, so I attempted to become a bit more strategic and have 2 in the morning, 2 lunch, 2 dinner, 2 at night. This went well for a couple of days, until I realised I wasn't urinating for an entire day! This was pushing me back into dehydration. It's the bloating I simply can't get over. You just don't want to stomach any water after the shakes.
I HAVE attempted to get help by frantically calling the dietician, who simply tells me that if I'm struggling, I could try some low fibre foods, but how am I supposed to get my required 2500 calories from that? The great thing about the Ensure Plus is that you're gaining 300 cals from one bottle, but the bloating is ruining it for me. The dietician won't offer further help as she tells me that it's the consultant who is in charge of my investigation and is the only one authorised.
Ok, so I attempt to contact him, but so far, after many, many calls over various days, I can't get a hold of him. Simply told that he's 'not here' So i'm completely lost.
Over the past week I have been in hospital various times for other issues.
- Woke up in the morning with what seemed like a cold. Yellow/green mucous etc. No cough. Carried on my day as usual at work, came home and noticed blood when I cleared my throat. Looked in mirror and yet another surprise - yellow patches on my tongue, like little rings. I immediately got in contact with the health service, got checked out. Oral thrush. They weren't concerned about the bleeding for some reason, but there you go. So I got given Nystatin to take, which seems to be clearing it.
- Next day, I go to work as usual again, but when I got home, I went for a bowel movement, only to be hit by extreme constipation. I couldn't pass the stool. I ended up soaking the toilet paper with blood. This got me going again, so I once again, got in contact and got checked out. They gave me glycerin suppositories to give me relief, as well as a physical examination. This seemed to help. The next day, I spent most of the time with severe stabbing pains in my bowels, which I can only assume is more hard stool trying to make it's way through. Went to the pharmacy after work to pick up a bottle of lactulose. Within 2 hours, I was basically passing fluid from my rear end, so definitely flushed me out.
Currently, I have stopped taking the Ensure Plus shakes as I get bloating and pains by drinking them. I've had nothing to eat for 2 days now, just trying to keep drinking water. I can't get any help to change the diet or anything. What do I do? Has anyone else any experience with these shakes?
My discomfort is localised in the lower right abdomen, and it can manifest itself as muscle pains going round my right hip too. Back pain isn't uncommon either.
More recent stool tests have indicated Calprotectin levels of 250, up from my previous 130.
I am just not sure whether I should push on with the shakes, or if I should attempt to try solid food, but low fibre. Getting really weak due to no sustenance, so hoping for some advice from people who are going through IBD etc. Although I am not diagnosed yet, I have an MRI scan on the 27th of this month coming up. I suppose this will be the start of the long investigation.
Many thanks to all who read this. Sorry it's a bit long.
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