My story. Any advice appreciated.
Posted , 7 users are following.
Hi all,
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.
1 like, 23 replies
paul75665 GSX1400
Posted
Hi All
Firstly, I want to say how incredibly sorry I am for all you Crohn's sufferers, it sounds like a horrendous ordeal to have to go through and I am in admiration to you all for seeming to deal with, and cope with this awful condition.
I'm following this discussion and now wondering if I have been misdiagnosed with IBS, and was hoping someone could help me decide if I should continue on my quest for answers or accept my diagnosis. My symptoms are no where near as bad and as frequent as they are for you all, I get constant bloating, lots of burping, random abdominal and chest pains although not severe, some nausea now and again, abdominal churning and gurgling, constipation, light headed feelings and fatigue / tiredness. My symptoms are constant, but can change within a matter of hours, with bouts of feeling really ill, to then feeling almost normal. My symptoms never change in severity either, I'm not getting any worse, I have been at this level of illness for what seems to be a lifetime. I have been diagnosed with CFS, Fibromyalgia and Anxiety too.
About 6 months ago I had two separate stool samples tested for faecal elastase (checking pancreas function), faecal calprotectin (checking for inflammation) and blood. There were no traces of blood, and faecal elastase was normal, however faecal calprotectin results were positive, with readings of >1400 and >300. In light of this my doctor suspected IBD and requested a prompt colonoscopy with biopsies and blood tests as well. The blood tests came back as normal, no signs of inflammation, and my colonoscopy and biopsy results came back normal, in fact the doctor performing the colonoscopy said my rectum, colon and terminal ileum looked very healthy, apart from some haemorrhoids. Armed with this information my doctor diagnosed me with IBS. I have since had two different doctors opinions since then, luckily one was from a friend of mine who is a doctor, and both have said due to the very pleasing colonoscopy and biopsy results, and the fact there is no inflammatory markers in my blood tests, they see no reason why I would have an IBD.
I wasn't convinced and have taken it upon myself to investigate these high calprotectin results, and have since discovered that there are a number of reasons for having gut inflammation, medications, gastroenteritis, Candida, food intolerances / allergies, haemorrhoids, but that still doesn't convince me. I have had some food intolerance testing done and it has revealed I am intolerant to yeast, cows milk and millet. Since stopping cows milk my symptoms have improved slightly, but I'm still experiencing these symptoms. I haven't eaten yeast or bread for years as it seemed to cause terrible upper abdominal pain.
As I said I haven't meant to butt in here, I am sorry, and don't mean to waffle on so much, but since the doctor mentioned IBD, I've not been able to let it go and accept my diagnosis, mainly due to my anxiety. I would really appreciate your thoughts and views on this, to then help me decide if I should accept my diagnosis and tackle my IBS, or whether I should pursue further courses of investigation to be 100% sure.
Many thanks for taking the time to read this, I do appreciate it, and my hats off to you all, my symptoms are no where near as bad as all of yours and I struggle to cope, so how you all do is beyond me!
GSX1400 paul75665
Posted
Hello Paul,
I am not as experienced as other members who HAVE been diagnosed, but I find it interesting that you mention inflammation can be caused by Candida.
I recently had doubts about my IBD investigation for the following reasons:
1. Around the time of my first symptoms (burning lower right abdomen) there was a stomach bug going around. My partner and young daughter both caught it and had vomiting and diarrhea. I had the diarrhea, nausea, but didn't get the vomiting. This went on for about a week.
2. The following week, I appeared to make a full recovery. Got my appetite back, everything seemed almost normal again. The only thing is, my diet in that particular week was very high in seeded bread (superseed!) and as it was my daughters birthday, I was eating some monstrously sweet birthday cake. Now, I may be wrong, but doesn't Candida like grains and sugar?
This got me thinking that perhaps I'm suffering from some kind of bad bacterial overgrowth, and that's why the sugary Ensure Plus drinks bloat me?
I am clutching at straws here. I may be completely wrong, but it just got me thinking.
paul75665 GSX1400
Posted
I think a lot of us without confirmed diagnosis' feel like we're clutching at straws unfortunately, it's the nature of digestive problems. I'm sure if the doctor hadn't mentioned IBD I wouldn't be giving this a second thought.
You are definitely correct in your observations of Candida liking grains and sugar, another sign is developing an intolerance or allergy to yeast, but not to wheat, barley, gluten, etc or other ingredients used mainly in bakery foods. I recently had an intolerance test done and yeast was one intolerance that came up. It has been proven that Candida overgrowth, as well as other bacterial overgrowths, do in fact cause inflammatory effects, and my partner and I have always suspected an overgrowth of some description, I certainly don't share some of the common IBD symptoms, and all my tests to date, of which there have been many, have all come back normal. I'm trying in my own mind to add 2 +2 together to come up with 4, but as I said before my anxiety is the thing stopping me from moving forward.
I was given Fortijuce at one point as I was loosing weight drastically, I actually lost about 30kgs in just over a month, but I wasn't too bad on it, I'm wondering if this was because it uses glucose rather than refined sugar as it's main energy, sugar supply. However, the elimination diet has helped me most, and having now found the relatively few foods I seem ok with, I'm able to keep my weight at a constant 67kgs.
Its definitely been interesting reading your reply and comments, I appreciate your time getting back to me. If there is anything you want to ask, please do, whether I can help or not is another matter, but I might have relevant info that could prove useful, you never know!
GSX1400 paul75665
Posted
Hi Paul,
Very interesting. Thanks for the support!
I agree that anxiety is a massive part of all this. In the beginning, I was suffering from some major anxiety attacks, going crazy, nowhere to turn. I've calmed down now, but it's still there to remind me every time I think I need to go to the toilet for a BM, any time I'm about to eat something, any time I have to go on a business trip for work. It's always with us, but invisible to everyone else. I understand where you're coming from.
30kgs in a month is quite a bit. I dropped from about 90kg to 82.5 last time I checked and that's been about a month now. I'm 5'8, but I do work in an office job (thankfully) I don't think I could manage a physical one now. Not with the weakness I'm feeling due to barely any energy.
What scares me is i'm the only one bringing in an income to support my family, but the statutory sick pay is laughable, so I can't quit and any downtime would cripple me.
Likewise if there's anything you want to ask me, feel free! I think we're both pretty much in the 'limbo' period where we don't exactly know what's going on and keep searching for answers. It's horrible. The fact you have a raised Calprotectin level surely needs further investigation, as I've always thought that in IBS, you can't have inflammation? I've only got two readings for mine so far, 130 on the first test, 250 on the second.
Still no consultant or dietician has got back to me, even after I left several messages. Hopeless!
Keep us updated Paul. I am very interested to find out what happens in your journey.
GSX1400
Posted
Hi all,
I've not been around on here much. I've been trying to keep my mind occupied, as I find with all that's going on, It has impacted me mentally and caused a lot of anxiety and sleep issues.
I did say i'd come back and update following my MRI on the 27th of July.
All went smooth. Had to drink half a cup of lactulose and then a jug of water. No fuss. Went into the machine, lasted about 45 minutes in total as they decided they wanted a contrast dye put through me. Didn't get the cold sensation that a lot of people report. I think the only bad part of the entire experience was clearing out the laxative afterwards, but even that wasn't as bad as I expected.
Now i'm just waiting for any results. Probably take a few weeks.
I'm still following a low fibre diet, but i've branched out a bit from my usual sandwiches all the time. Now i'm eating more variety and trying to live as normally as I possibly can. I still have the right side discomfort, but I think a lot of my additional symptoms such as poor sleeps, lack of appetite etc are down to anxiety.
I had a dentist appointment to get an extraction about a week ago, and normally I'm ok with this, as I've had it done before. I lay in the chair, happily waiting for the procedure to begin. I felt good. Then, all of a sudden, out of nowhere I got hit by anxiety again. Started sweating profusely and thought I was going to black out - rapid breathing too. This took me off guard, as I wasn't normally like that before all this began.
So yeah, I've found taking my mind off everything and trying to live normally really helps. God knows if I really do have IBD, or if it's all down to mental health - Maybe a mixture of both! Guess this is what the tests will show.
Thanks for reading, and I hope you are all managing.
GSX1400
Posted
Hope you are all OK.
Does anyone still read this thread? Just not sure whether I should update it or not.