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JUST DIAGNOSED 28YR OLD FEMALE

Posted , 8 users are following.

millie1986
millie1986

Hello, id like to share my experience with UC. I had a little blood when i wentto the toile last September..I just ignored it...it gradually got alot worse.In november I finally plucked up the courage to go see about it as After a month or of passing blood i was getting very worried...so i noticed more, and more...then  Blood and mucus in stools, I have bowel movements around 4 times a day...however not much pain at all (i guess im one of the lucky ones). I get clots of blood too and am up around 2/3am every morning passing blood..dark!! I FINALLY went to the doctors(november 2014) and got a series of blood tests which all came back "normal" I had to go for the awful  Flexible Sigmoidoscopy which i opted out of sedation...i just wanted it over and done with!! It wasnt the best experience and i cant believe I went through it fully concious! this was just (jan 2015) and my bowel is very inflamed, and they have diagnosed me with UC. They have said they have took some of my bowel as samples to rule out crones and anything else but are pretty sure its UC. 

I URGE ANYONE PLEASE DO NOT SUFFER AND WORRY LIKE I HAVE. I am still passing blood and i've put mkyself through hell and back. This has completley changed my life and I am so grateful to get a diagnosis. Not what I wanted to hear, but it could be alot worse! I was back at the doctors this morning and they have prescribed me mesalazine 1g which i need to insert into my back passage...but you know what it could be alot worse!!!If anyone has any questions please ask me. I scared the life out myself by going on the internet and if only i had read a post like this...

Also...When I have told some family members this is what is it,,,they kind of just shrug it off...like its nothing and "dont eat spicy food" I really dont think people know the severty of this...can anyone give me more information about this bowel condition. Thankyou xx

1 like, 16 replies

16 Replies

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  • adie1969
    adie1969 millie1986

    Posted

    Hi Miller I have just recently been diagnosed with UC too I had a colonoscopy 2 years ago after passing blood and mucus and it was all normal as we're my bloods. I continued to have bleeding but by the time I had my follow up appointment the bleeding had stopped and I was discharged. I started bleeding again in September 2014 and had explosive diarrhea and mucus, I felt terrible and my bloods came back borderline anemic, my GP referred me urgently and fortunately this time when I had my colonoscopy there was multiple sites of inflammation, they took biopsies and diagnosed UC, I  have to take meselazine orally 3 times a day. I know they say diet isn't a causing factor but it can certainly make your symptoms worse, I can't eat potato skins as they cripple me. I'm vegan so don't eat dairy anyway but I've heard it's best to avoid it. I think it's a case of trialling different foods and eliminating anything that effects your UC. You can download fodmaps that show you how different foods are linked and what they're likely to effect. Hope your symptoms settle down, there's also a crohn's and colitis UK Facebook page where you can get lots of advice. Good luck xxx 
    • millie1986
      millie1986 adie1969

      Posted

      Hi aide. I,M sad that you are going through this and actually had to be hospitalised!! I hope you have your family around you for support. Since Monday I do feel lIke a weights lifted off my shoulders! I really hope you manage ok xx
  • bustergut1
    bustergut1 millie1986

    Posted

    Hi Millie 

    you could have been describing me in June 2013! I also ignored & delayed. I've replied to Kim & Ben on the ulcerative colitis forum so it might be worth reading that so I don't have to type again! I didn't get on with any medication that was via the rectum 1. Because it was too painful & 2. Because it wasn't helping & I wasn't responding. So if you think it's not helping you tell them! I know its not nice having the camera but sometimes it's good to stay more awake & then you can see what your bowel looks like. It confirms that you do actually have a problem that's not your fault!

    other people even loved ones don't really understand this disease no matter how supportive they are. I guess I'd be the same if it was the other way around. I get a lot of sighs when I've turned around from the front door & gone back for the third or more time to the loo before can leave the house. I'd get annoyed as well if waiting to go out. I've also had it suggested that I should try to chill out more & not talk myself into needing the loo. I can tell you that attitude makes me more stressed & I don't imagine I need the loo!

    ok, so if you've  been diagnosed with IBD ulcerative colitis nobody knows why & when it can happen. Your brain is thinking your bowel is alien to its body. You can have times when you want to go to the loo & strain & times when it's bowl splattering diarrhoea with perhaps mucus & blood. The amount of blood will depend on the severity of the inflammation which is graded 1-3 mild, moderate, severe. Your diet shouldn't have caused this unlike ibs but I have a low fibre diet & avoid spicy food, cabbage, broccoli,sprouts etc & fizzy drinks, coffee especially when I'm having a 'flare up' blood,mucus, diarrhoea etc. it will be helpful for you & your doctors if you keep a daily record of what the time of day & night that you have a bowel movement & what is it like, how much if mucus or blood etc. You might want to google & print off The Bristol Stool Chart ( always good for a laugh) to show you the variation of bowel movements. I never kept a record until since Christmas as I was hospitalised just before Christmas 2014 & I have found it really useful this time.

    Weigh yourself each day to see if you are loosing any weight. Tell the doctors if you are. You could also be loosing vital vitamins & nutrients from your body. My potassium levels were very low.Keep up drinking plenty of water & have a balanced healthy diet.

    If you feel knackered Sleep! Fatigue is a big problem. 

    Going out I take a little kit with me. Andrex wipes, spare pants, tissues, cream for sore bum! Spare change in case you need to pay to get into public loo quick! Go to the CrohnsColitisUK website for help & advice & if in doubt if you're feeling rubbish ring your IBD clinic & talk to someone! Hope this helps. You're not alone with this disease.

    • millie1986
      millie1986 bustergut1

      Posted

      hi buster thanks for your reply! It's conforting and nice to gets ice.. I feel kind of at the denial stage because to look at me, I'm healthy looking always lots of make up bubbly girlie girl and I just can't believe I have his "condition"  and it's like some people don't believe me. I was actually out for lunch their and within 10minutes I can feel my stomach bubbling then I'm on the toilet, full of blood clots and mucus!! Yuck!! I actually feel like taking a picture and showing people because it's like..oh well we can't see it so it doesn't exist!!

      did you lose any hair with the mezaline? I have heard this is is a side effect! I am suppose to start them tonight but the pharmacy doesn't have any and need to wait till tomorrow! (Another day of putting it off I suppose)

      i will have a look at my diet that's a great tip thank you! I have a nutribullet and have done the full juice cleanse stuff Nd it just goes to show its a load of rubbish even if you do eat kale and spinach everyday!

      i was fully awake when they had the camera in I didn't have any sedation so I did find it uncomfortable but I couldn't look at the screen but I see why you did!! At the moment mines is classed as "moderate"

      thankyoumfor your reply! X

  • bustergut1
    bustergut1 millie1986

    Posted

    Hi mine was grade 2 moderate when hospitalised in December because going 10-12 times a day & felt like I'd got flu also. I got really dehydrated & poorly. I've been out today to shops & friend said 'hi you look well!'- I don't, I'm really pale & feel like C**p( literally). It's the invisible but noisy disease! Lol! I think I had some slight hair thinning,but I was on very strong oral steroids for 13 months & I'm back on them now with Humira, pentasa & calcium. The only good thing to come out of this for me personally is the size 16/18  12 stones+ that I couldn't shift went to 14/12 10 stones+ in 6 weeks so I got a high from fitting into all these new clothes & people said I looked great. The very bad down side of all this was it was too quick, too drastic & Not a healthy way to loose weight So don't get caught up in that. I'm now back on steroids so the weight will go on again! My family  so supportive when I went into hospital 18-23 December . In a very strange way it think it did us all good to realise this condition is real! Yes you will be in denial! My IBD nurse said it usually takes younger people about a year to accept & it's taken me about 18 months. Try not to loose your sense of humour. On New Years eve I received through the post a brown package. Thinking it was belated Christmas gift I ripped it open to discover  an enenema & invitation to camera on 13th! Nice! Oh well might as well end the year as started!

    Another tip I order my meds on line with my doctors surgery & set up reminders on my calender on iPad so I never get near to running out.

    • millie1986
      millie1986 bustergut1

      Posted

      Thanks again for all your information. 

      It's so refreshing to actually talk to someone because if I hear "aw well you've not got crones" one more time I think I'll scream!! Do you suffer from a lot of pain? Or are you similar to me? I just get the odd stabbing pain now and again and im sooo bloated and need the toilet as soon as I eat pasta.. 

      With regards to the weight it sounds good you have lost weight and feel more confident however as you said it's not healthy to lose such aloy in a small amount of time!!

      For me I'm a size 8/10 my weight goes between 8. 1/2 9st however at the end of last year I was around 8st 2 my face just faded away and even the nurse who took my bloods commented on how thin I pooked! I do however think I lost weight due to stress of not knowing what was wrong!! 

      The doctor gave me an anxiety tablet called citropram ( I think that's the spelling) it's really changed my life they took around 6 weeks to work but I'm not as nervous and I'd never got through the colonoscopy without it!! I didn't feel nervous but the nurse said my heart was "beating like the clappers"

      I honestly didn't even know it was grades on how bad oit was.. I suppose I'll find all that out when I get my biopsy results!!!

      What a rubbish start to get that through the post but your right if you don't laugh you'll cry!! It's not something that will ever go away! I'm going to look more into it because it's actually very interesting reading up on everyone's blogs and seeing how it affects them! For now I'll treat this as a new learning experience!!xx

  • bustergut1
    bustergut1 millie1986

    Posted

    When it was severe first flare up pain was like being in labour, but now I only get on & off discomfort over area in my lower left colon & further up on the right side higher than belly button. My colitis more wide spread. When I stand up & walk around get feeling of nausea & faintness then need to get to the loo quick. Once been other symptons disappear. Anyway don't read too much about colitis remember a lot of people only post bad stuff & you don't know if they're real sufferers. You will get sorted & get your life back. I've travelled to New York last October, been climbing  in the lakes & shopped till I dropped! Keep a diary & also write down  the good stuff! Good luck
    • jon13689
      jon13689 bustergut1

      Posted

      Hi Bustergut

                     We are pleased to hear that your life has had some good stuff in it whilst suffering colitis. It brings us a bit of hope for the future. Marie might well have some sort of a normal life after all thank you for posting this and good luck to you

                                     Jon and Marie 13689

  • jon13689
    jon13689 millie1986

    Posted

    Hi Millie

          My wife Marie has just been diagnosed with UC and is currently waiting for her next hospital appointment at JP Hospital Gorlseton Great Yarmouth.

    We are both anxious to get it over with and start proper treatment for it.

    As we recieve more imformation about this disease we will pass it on.

    Hope your treatment goes well please keep in touch

                                         Jon and Marie 13689

    • millie1986
      millie1986 jon13689

      Posted

      Hi Jon I hope all is well your end. You csn email me your address and we can keep in touch if you prefer. I can't remember if I touched on this earlier but the medication they have prescribed me can cause hair throbbing and hair loss.. It's a double edged sword. I want to stop this horrible bleeding bloating and sitting in the toilet all the time.. But vanity is making me skip my tablets..

      I'm going to try and find alternative ways or diets or something... I want all this to stop but the possibility of losing my hair or it thinning.. No way!! I know it sounds terrible and selfish snd everything else but no chance!!! Even my hubby said how are the tablets hoing and I just say yes fine! My twin is a pharmacist and hrs asking me too and I'm telling White lies.. I need a solution

      I hope your wife's next appointment goes ok.. I had the colonoscopy wide awake and if I can do it anyone can!! They took some of my vowel for biopsy and I'm awaiting results.

      Keep in touch

      Lots of love Chloe aka millie x

    • jon13689
      jon13689 millie1986

      Posted

      Hi Millie,

            Hope all is going well for you and that the results you are waiting for is as good as possible.Marie is suffering with toilet trubles which is obviousley part of this.We are awaiting our next appointment at yarmouth hospital hope that it is better news.

      We both thank you for your reply and hope things turn out ok for you, and yes we will keep in touch

                                 Jon and Marie 13689

  • bustergut1
    bustergut1 millie1986

    Posted

    Hi Millie ok now tough love- you know you can't skip your medication! Why would you not want to try to get your bowel under control? Take your meds, drink plenty of fluids especially fresh water & eat little & often of healthy food. As for the hair loss I noticed a FEW hairs combing through hair when I was in quite high dose of oral steroids. I didn't get on with mesalizine via the rectum as too painful. I now take it( pentasa) 4 tablets 2 x a day, steroids & calcium all prescribed. Have you ever consider that your hair loss can be because you are poorly & possibility now lacking in vitamins & minerals due to diarrhea & weight loss? Please take your meds but ring clinic & ask about hair loss. I haven't read or heard of anyone loosing great amounts of hair or going bald. I would be devasted if I did. I Don't think I'm vain but as not particularly attractive 58 yr old woman with still reasonable natural colour head of hair I would look awful. I remember the days of having to wear a swim cap for school swimming well! 

    Ibd not only messes with your bowel it messes with your thoughts. We all go into denial & think we can take over & fix it. Possibly- but not without help.x

     

    • millie1986
      millie1986 bustergut1

      Posted

      Hi bustergut

      Thanks for the tough love xx

      I honestly know what your saying & I've actually not lost any hair whatsoever because ive only took afew tablets then stopped because I read about the hair loss....

      I'm just so annoyed because i want all the horrible stuff to go away but the possibility of hair loss freaks me out!!

      I had a baked potato yesterday and I was in agony after I eat it..

      I'm going to try gluten free products because ive read that helps?? What are your trigger free foods xx

      I'm so fed up I'm sorry for moaning

    • sheila91262
      sheila91262 millie1986

      Posted

      Hi as I said on another reply my son has UC, first diagnosed 1 year ago, and went straight to severe! Has lots of meds, came off some too quickly, even tho followed GP advice, and was back up to pain and weight loss. He ended up in hosp on intravenous steroids and rehydration etc. He was also losing his hair until his body started to heal and absorb nutrition properly. I did loads of research and found vitamins and minerals are quite often not absorbed properly, he takes multi vitamins and minerals and it certainly helped his hair to grow back and grow stronger. Vitamin B complex esp Biotin is the most important vitamin and you can take these in addition to the others, you cant overdose on vit B as the body passes it out if not needed as water soluble. Also potassium is also needed as extra so take in tablets or eat bananas!

      One important piece of advice, make sure you have a great consultant as they are not all as good as each other, you can get your GP to refer you to a specialist clinic such as at St Marks hosp London or John Radcliffe Oxford. Good Luck.

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