Any help

[Curtb87]

Anyone give me suggestions on what the veins are that keep popping up going through diagnosis atm been eating 3k a day trying to put weight on which is not working just coming out the other end I’m at my wits end with it anyone I’ve asked doesn’t know so hoping someone may have some answers I have some other pics as well if ya zoom in look to the left your see what I mean with my veins and yes I know I’m skinny don’t need negative comments thank you

[Curtb87]

???

[Annie31 in reply to Curtb87]

Firstly let's address the attitude! You wouldn't receive negative comments on being skinny on this forum as members or members relations know only too well how difficult it is to keep weight on when you are seeing everything you eat going down the toilet! I presume you are on this site because you are waiting for a diagnosis of UC or Crohns. A lot of people are skinny as you put it because of weight issues and a lot will be more rounded because of the use of steroids in treatment so it's no holds barred! You are going to find it difficult to take in and keep 3k a day at the moment without a diagnosis, appropriate medical treatment and the right dietary needs for your system. As far as diet is concerned, you can usually get advice from a dietician after diagnosis and then it will still be a case of try and see what works for you. Certain foods suit some whilst others have the opposite effect, very much a try and see.As far as the veins popping up and I can tell you are concerned about this, it's probably a good idea to ask your GP what this could be from. Are you having pain on this side? Sometimes veins tend to pop to the surface of the skin from the body being at a higher temperature - I'm elderly and the veins on the backs of my hands and forearms raise in the evenings when I get warm but it's nothing more sinister than that.

I hope this helps and good luck with your diagnosis.

[Curtb87 in reply to Annie31]

Hi It’s been on going now for around 3 years + in & out of hospital doctors etc it’s only been this year that the hospital have really listened I’ve had around 3/4 colonoscopy I’ve had 2 endoscopy and a few sigmoidoscopy they have all come back normal had a pill camera on the 17th of last month which awaiting results for and only just started this year to book me into a dietitian unfortunately it’s not face to face atm it’s getting frustrating as it’s been on going now for a long time I’m eating a lot of food to try and manage to try and keep enough in me I’m in n out the toilet 5/6 times a day mainly morning and evening is my worst it makes it impossible to do anything I have blood in my stools daily bloated diarrhoea vomiting list goes on just feel like getting no where and any medication I get doesn’t help me sorry to seem abrupt but most places I have posted or asked for advice with my pics been a lot of negative comments ty for your advice

[Curtb87 in reply to Curtb87]

Also I have tried many times with different foods what foods good what foods bad it seems to be no food is good sometimes I get a good day where I don’t need to go constantly then it’s followed by a few days of agony and being constipated

[Annie31 in reply to Curtb87]

Hello Curt, just answered with a long spiel and I've lost it for some reason! Anyway, in short when you get your results from this latest test come back and let us know what's happening.

One thing for sure you can always reach out on this forum for support because everyone or their relation members will have been where you are and can sympathise. Obviously we can't diagnose not being medics but we can listen, support, and offer advice to try things out.

As far as dieticians are concerned why can't they use the internet like everyone else? It's disgusting what is going on and I can't see any reason for them to not be in touch in one shape or form! As for your vein question best to speak to your GP and find out whats causing your concern.

[Kelly100]

Hi. I’m not familiar with that symptom I’m afraid. The only thing I can think of is high blood pressure or your weight loss could unfortunately be exacerbating the problem. I did a quick google search and saw that if the veins are localised around the belly button it could be something called portal hypertension. Sorry I couldn’t be of more help.

[Annie31 in reply to Kelly100]

Hello Kelly, how's things with your son?

[Kelly100 in reply to Annie31]

He is plodding on Annie. He had an a small bowel mri at theend of last week to see if they can establish any crohns so we are awaiting news from his ibd team. In the meantime we’ve had a letter from his surgeons secretary informing us that surgery is now being resumed and he is on the list to have his reconnection within 3 months. He’s very eager to have it done but I’m much more wobbly. I’ve told him not to invest all his hopes on this happening until we have spoken to his consultant. Now it’s the waiting game ... x

[Annie31 in reply to Kelly100]

Aw! Bless! We shall have to keep all things crossed as we said before! Sophies been mucked about as well, not by her consultant but his team and he's spitting nails. Anyway with his blessing she has started her IVF now so anything on the gut front is on hold for now. I'm like you, I've mixed feelings on all this but it's her life and I have to just stand back now, hopefully not to have to pick up all the pieces if it goes pearshaped!Take care you! xx

[Kelly100 in reply to Annie31]

Oh gosh. I’ll be crossing everything for her . She deserves to be blessed with some good fortune. Now to start growing a tiny person ☺️Thanks for checking in lovely. Will let you know the outcome of it all soon x

[Annie31 in reply to Kelly100]

Thanks Kelly, yes do that! x

[Howlinwolf999]

Hi Curt, just come across your post, sorry to hear that you have had such a bad time over the last 3+ years. People giving you negative comments to your pics are just being mean and really don’t understand how you are feeling, if they can’t give you positive feedback they should STFU if you excuse my language, makes me really angry. Are you in the UK, which hospital region? From what you are describing what you really need is a proper diagnosis identifying the problem, then you and your health practitioners can put a plan in place to deal with the issue and symptoms. I am in Leicestershire in the UK and for me the gastroenterology department has been superb all the way throughout my treatment. I was first diagnosed with Ulcerative Colitis pretty quickly around 1976, rushing to the toilet up to 20 times a day was exhausting, bloody stools, mucus etc led to me losing quite a bit of weight. Fortunately, with the early diagnosis the doctors were able to get my symptoms under control. One of the problems when we come to diet is we are all different, as some others have said with food you have to taste and try and see what works for you. Initially I was advised to go on to a pretty bland diet which was OK for a while but you can only take so much of boiled fish & mashed potatoes. When things had settled down, I became quite adventurous and it was not too long before I could work my way up to spicey food which I think goes against normal advice but worked for me.

I think you have to get a bit pushy to get a proper diagnosis, this has gone on for way too long and you need this sorted, speak to your GP/Consultant possibly also your dietician.

In 2016 I had some major surgery and finally got rid of my Ulcerative Colitis after nearly 40 years, post operatively I was prescribed something called Fortisip which was a food supplement which I think is only available via doctors, only place I have ever seen it was in our local pharmacy. It came in little bottles (150-200ml) and was a high energy milkshake type drink which was used to build me back up after surgery. I can’t exactly remember but I think I had a couple or three bottles a day. It may be worth asking your health people if Forticip or something similar might be suitable for you as a short-term measure.

Best of luck, I hope you get things sorted soon.

[Curtb87 in reply to Howlinwolf999]

Hi sorry for the late reply it’s been a very traumatic and emotional time it’s mainly my GP who hasn’t been helpful I’ve gone through 3 since 2017 as they just don’t do there jobs or I just think they kind of fob me off for instance I’ve im in a lot of pain and can’t hack it I call doctors told to be wait 3 weeks for fone call ring 111 they get me a appointment gets referred to a n e they won’t help as it’s long term and they only deal with short term pain etc so then I’m left in agony I have had everything you could possibly have in terms of diagnosis they have booked me in for a mri they have said they don’t know what is going on and just say my belly just don’t function properly I’m 34 years of age I eat around 3k average a day and I’m 7st 4 not gaining anything regardless what I eat or change it’s still the same result I eat I go to 48kg I then have a poop and go to 46.4kg it’s the same like clock work it’s so frustrating my gastroenterologist I had was long Croft Wheaton on QA hospital Portsmouth he was very concerned and seemed like he was the man who I was going to get answers from they then changed me to dr treble and he is ok but I have had to physically go to (pals) and go off my head over the fone with my gp and consultant weekly to get anywhere I have had several dietician appointments booked and cancelled from my gp the results I get back from bloods and stools are normal but I ain’t normal because every symptom I have is related to crohns and colitis but just not had the diagnosis to confirm it they have tried to say it’s down to stress but when my symptoms first started I wasn’t stressed was healthier in full time work and with my kids and girlfriend I have lost my family over my health because I couldn’t work and still can’t atm because I’m in the toilet at lest 5/6 times a day half hour at a time would be very hard to find an employer willing to lose 3 hours of me not working a day on average it’s affected my mental health just constantly feel let down by the nhs my consultant says no news is good news but in this case it isn’t because I’m in constant pain they have found numerous things wrong in colonoscopy and had other ones and it’s not been flagged up a lot of information been lost or not forwarded to my gp or vice versa so I have to do bloods for my gp then have to do the same for hospital I have done so many stools (fit) tests sigmoidoscopy they haven’t really giving me a lot for medication either mainly stuff for ibs as they say the don’t want to give me something that could make me worse so now I have to wait for my mri and hope that something might be found or have some answers and finally got a dieticians appointment booked because this ain’t normal for a 34 year old man who eats 3k calorie plus a day to be 7st 4

Sorry for my rant 😉