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My story. Any advice appreciated.

Posted , 7 users are following.

GSX1400
GSX1400

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

23 Replies

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  • jaw90561
    jaw90561 GSX1400

    Posted

    Hello,

    I am 18yo and I have crohns disease....I started getting signs and symptoms around October time and wasn't diagnosed until mid January....I spent numerous nights in the a&e waiting room and every time I was sent home with nothing .....the nauseous, sweating sensations u describe are something I've experienced too....I was originally on those shakes but only for a day or two because I had a camera test done which explained everything as it showed up a lot more serious things happening inside! I finally got admitted to hospital after months of trying to get help because I was throwing up and in severe pain ...I had an x-ray done which showed there was inflammation....

    In terms of the loss of appetite etc, I went days without eating because it just came back up....I lost about 2-3stone before I was treated....all I can say is stay hydrated because otherwise it can be critical....also try and eat dry, soft foods because they are much lighter on the stomach and things like tuc biscuits are enjoyable to eat too so at least you are fuelling your body somehow! I even contacted a few private doctors when I was so desperate to get help and u may have to pay but you could end up getting proper tests done next week rather than waiting years!

    Sorry hopefully this is helpful or encouraging in some way....all the best and I hope you get help soon smile

    • GSX1400
      GSX1400 jaw90561

      Posted

      Hi Jodie, many thanks for the reply! I am so sorry for your troubles.

      It seems you only get admitted to hospital when you're on your last legs. It's horrible. Meanwhile you feel alone and without help. People who go through these diseases are invisible to normal society, until it happens to them.

      I am still struggling with loss of appetite. I've not had any vomiting, thankfully, but I am very much trying to stay hydrated, which seems more difficult to do than when I was well. No matter how much I drink, I feel like it's going in and not doing much.

      Nice mention of Tuc biscuits! I love those anyway, so will be sure to pick some up. Anything to try and get some calories into me! My biggest worry right now is my weight and trying to maintain it. I just don't see how we can get 2500 calories (men obv) per day when being highly restricted. Maybe I just need to learn.

      Thanks so much, i'll keep you all updated.

    • jaw90561
      jaw90561 GSX1400

      Posted

      No problem at all for the reply...I know how lost you can feel and you just need to hear from someone who fully understands....

      Yes as you say you don't get admitted until your basically at deaths door!! My sister was 12 when she was diagnosed and her insides were in shreds....she had to be tube fed for 8weeks because our GP was so useless they never even saw the signs that it was something serious....so keep trying and don't give up...because in adults if it goes on and on you can end up having to get an operation or get your bowel removed and nobody wants that....if it means repeated visits to the ER just do it because eventually you will get the help you need.

      I still struggle now to eat as much as I used to....but yea just find a number of foods that you really enjoy and try your best to get something down each day smile I prayed a lot the whole way through my painful, lonely journey and I got through it and I'm much better now....

      Really hope you get help soon...those days are so dark and I feel for you...as you say only those who have it understand it so that's why we all have your back and you have our support...all the best smile

    • GSX1400
      GSX1400 jaw90561

      Posted

      Hi again Jodie,

      Thanks so much once again.

      With each reply I get from everyone, I pick up a new piece of information which helps me understand more.

      I am currently struggling to eat as much as I used to. I'm probably getting just over 1000 calories a day now that i'm eating sandwiches, so missing out on 1500 for a guy!

      One question I have that is always on my mind is: How do you know what a flare is? Obviously i'm completely new to this. I currently have that constant tightness/pain down in my lower right abdomen which is always there. Sometimes it gets less painful, but sometimes it gets even worse - I believe it depends if there's any food moving through that particular part of my bowel. 

      I've noticed that the more I eat over 3 - 4 days before a bowel movement, the more I seem to become bloated.

      Will this pass? I don't know what it means to be in remission either, or how to achieve it? Is it just luck?

      When in remission, can you go back to eating stuff that you wouldn't normally be able to?

      Or have you not got that far yet?

      Thanks so much!

    • greg80227
      greg80227 GSX1400

      Posted

      Regarding how do you know what a flare up is. I know when it's comming on because I get a soreness in my back, abdomen and can literally feel pain as food waste passes along my intestinal tract, it's worse when the pain radiates down the front of my thighs and I get chills, nausea and can't go to the restroom. I also have urinary issues due to this, but everyone experiences different symptoms. Keep a diary so that you are prepared when visiting your doc.

    • jaw90561
      jaw90561 GSX1400

      Posted

      Hello,

      Okay well personally when I have a flare up I get severe stabbing cramps in my stomach and I go to the toilet a LOT. I often have that tight pain in my right side, today it was my left!! Sometimes you have flare ups after eating certain foods for example meat is a killer for me sad I totally avoid lamb and pork including sausages, pork chops etc because I will be in pain for days after! Chicken is a very gentle meat on the stomach as is fish and it provides you with plenty of protein to keep your health up!

      Tbh I never really experienced bloating but that is probably has after eating certain things. I often get worse gas or stomach pains if I eat pastries or battery foods I.e croissants or battered chicken....hopefully this is of some help!

      All the best smile

  • maureen15717
    maureen15717 GSX1400

    Posted

    Hi, sorry to hear of all your problems.  You really do need to get a diagnosis of your problem.  Taking all the different medications could be causing some of the problems.  You really need some scans and possibly a Colonoscopy which is usually the one thing that gives a lot of answers.  You must  contact your Consultant, do not be put off with excuses.  If not the Consultant ask for his IBD nurse.  A dietician is not the person you need at the moment.  All of us that have suffered for the first time with this debilitating illness and before its confirmed have lost a lot of weight but once you get on the right medication etc you will get it back.  Remember diagnosis is the first and important thing to get.  When you have that, come back and we are all here for you with our stories etc.  Good luck and demand attention.   You must do this because you could find that the stress you are putting yourself through now could be making the problem worse.  Can't be much more help now but in time come back here with more information.  Good luck. 

    • GSX1400
      GSX1400 maureen15717

      Posted

      HI Maureen, thanks so much for your positive words and encouragement.

      All they have booked for me so far is a small bowel MRI for the 27th. Trying to get a hold of the consultant is proving quite difficult. I did manage to get through to his secretary, and she said she would get him to call me back, but I've had nothing.

      I definitely hope I can get my weight back. It's my biggest worry at the moment. Got calories on my mind constantly, and how to get them with such a restrictive eating plan.

      I will push them as hard as I can to get a proper diagnosis and will return to update you all on how my MRI went, and again when I get results. I feel like I am going to use this message board as a rock, as no one is truly on the same level as you until they've gone through it themselves.

  • greg80227
    greg80227 GSX1400

    Posted

    Hello. I have Chron's and diverticulitis, almost everything you have described symptom wise is what I experienced 5 yrs. ago before I had my temporary ostomy and fistula repair surgery. I am 5'8 and weighed 120lbs. When admitted to hospital. I had a 6 hr. surgery and spent 21 days in the hospital.

    If you can go and get a second opinon, do it.

    The docs. originally told me I needed to have my gall bladder removed or that I had a gallstone, which turned out to be a misdiagnosis. I hope you don't end up getting unecessarry surgery. Good luck to you.

    • GSX1400
      GSX1400 greg80227

      Posted

      Hi Greg,

      Thanks for the reply. I very much appreciate it.

      I am quickly losing faith and patience with the doctors, especially GPs.

      The upcoming MRI is for the small bowel. When I questioned this, I was told it's because they can't get a camera into the small bowel, so I am unsure if they are planning a Colonoscopy next. I would have thought the colonoscopy would be first.

  • greg80227
    greg80227 GSX1400

    Posted

    By the way, my symptoms started when I was around 39 yrs. old but didn't pay them the proper attention.

  • greg80227
    greg80227 GSX1400

    Posted

    Hi. Colonoscopies really help the docs. see what's really going on inside.

    Don't be afraid, I've had 5 in the last 9 years.

    • jaw90561
      jaw90561 greg80227

      Posted

      Yes they are amazing and a biopsy can be taken which can be the key to your diagnosis, at least it was for me! I had these tests done at 18years old and I'm a female lol, so if i can do it anyone can wink

  • anna64644
    anna64644 GSX1400

    Posted

    Hello, reading your story has made me feel very angry and upset for you. I had a vague pain in my upper right abdomen, nothing severe but odd enough for me to think it wasn’t normal. I had an ultrasound first, barium X-ray then ct plus contrast scan and from all that they deduced liquid wasn’t going through as fast as it should so colonoscopy was next. First I was told it was probably Crohn’s because they couldn’t find anything else wrong and put me on steroids, by this time the pain had gone and I wasn’t convinced, probably wasn’t good enough so I asked for a second opinion and had another colonoscopy. My Crohn’s is in the terminal ileum which is very difficult to reach as it is so far up but Crohn’s is what it was. I had no trouble with it for 4 years and still wasn’t entirely convinced I had it but eventually more symptoms happened, I brought up undigested food and couldn’t eat big meals because of the narrowing and inflammation. I struggled to swallow the horrid stuff before scans as I felt so full. After many flare ups and bouts of steroids and other meds I eventually had an op to remove 7cm of small bowel which has given me 5 years remission so far. If any of your treatment is making you feel worse then I would stop it as it seems to be giving you added problems. I was deficient in Vit B12 and D long before any Crohn’s symptoms began, they are very common so you may like to ask if that is the same for you. Don’t eat anything fibrous, think beige, chicken/rice/banana/white bread (no grains)/apple juice/water (warm water helped me in flare ups), you can google suitable foods which won’t upset you. From my initial pain I was investigated very quickly, hadn’t heard of Crohn’s. You definitely need a colonoscopy/ct/mri scan, I feel so bad for you that the problem isn’t being addressed quickly enough. If you can possibly afford to go privately for the colonoscopy I would recommend you get one ASAP and insist on one to your GP or GE. Hope you find answers soon, good luck.
    • GSX1400
      GSX1400 anna64644

      Posted

      Hi Anna,

      Please take my thanks for yourself and the many other people who have replied in my thread - It's so good to know i'm not alone, because right now I feel so socially isolated. People think it's a joke.

      Thanks for the advice regarding food.

      Yesterday I went and bought some white bread and chicken, so I could try sandwiches. The ensure simply hurts me and bloats me, so I needed to try something. Well, fast forward to this morning, I thought I was going to pass a little bit gas out my rear end, but actually it turned out to be mucous!! I can't win!!

      So, what do we do? If I have ensure, the bowel movements are formed, no mucous, but I get pain and bloating after having it.

      On the flip side, if I have these sandwiches, I get no bloating, no pains, but I have to deal with mucous coming from the exit???

    • maureen15717
      maureen15717 GSX1400

      Posted

      Hi again,  Don't panic about the mucous at the moment, because your gut has no digested food  in it.  Build yourself up with bread and chicken as you have started on and see how you are in a few days.  It takes time for your food to go down and your bowel has got to fill first. Hope you see what I am trying to say and keep on at that Consultant.  

    • greg80227
      greg80227 maureen15717

      Posted

      Hello Maureen. Even after my colostomy surgery I was passing mucus and was alarmed but was told by my surgeon that this was normal.

      Stool normally contains a small amount of mucus — a jellylike substance that your intestines make to keep the lining of your colon moist and lubricated but if blood is present it is not normal. Talk to your doc. because this is my experience and I am not a doctor, wish you the best.

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