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Ulcerative colitis with constipation & poss overflow anyone else suffering

Posted , 6 users are following.

kittd
kittd

Flare up of ulcerative colitis for several but I also have ibs and suffering with constipation as well as bloody

diarrhoea. ? Overflow. Prescribed Salofalk granules & Pred rectal foam 2 mths ago but not helping. Taken laxatives at night about twice but aware shouldn't take too often.

Feel fed up & worried about going out as have urgency.

Gastro appt was this month but hosp cancelled to Feb.

Anyone got same problem?

0 likes, 11 replies

11 Replies

  • barbara80658
    barbara80658 kittd

    Posted

    I have the same problem.Last night i had to go to the loo 12 times.  The last time i had an accident.It all just flew out .sometimes you have no warning.I am back to square on again,I havnt been out for nearly 2 weeks.I changed my meds from salofalk to predisolone. because I was losing my hair. Well i felt terrible on pred.So I asked to go back on salofalk and my first enama was last night.Wonder if that caused it? I rang the helpline loads of times  nobody answers.

     

    • kittd
      kittd barbara80658

      Posted

      Sorry to hear you've not been out it's horrbile being stuck in so you can be near a loo. I take Salofalk granules 3mg which is max dose. My hairdresser noticed my hair is breaking off and told me to get my bloods checked thinking it's malabsorbtion or thyroid problems but now I've read the Salofalk leaflet it says very rare side-effect is hair thinning! I want to change my medication especially as it's not helping with my flare up. Which helpline do you ring? I only have Gastro Nurse to ring but can't leave message on her answerphone so impossible to speak to her but I can email her. Do you have a Gastro Nurse to contact?
    • barbara80658
      barbara80658 kittd

      Posted

      Hi Kittd. I live in Bolton so the hospital I am under has a helpline to ring if you have a problem. When I ring they just say   ( ANSWER MACHINE)This is for people with flare ups you can ring between 11 o clok and 12 30. If you want to change your appointment ring another number.When you do that you just get the same answer.

       

  • diane03986
    diane03986 kittd

    Posted

    I its my first time on here.i was diagnosed 2013 with severe left sided ulcerative colitis

    I suffer with constipation and over flow. I take 1 sachet at night and if I don't go for a few days I up them to between 2-4 per day depending on how many days I have not been for then when it does work it's horrendous! It's like I have a plug that is stuck in my back passage then it explodes and the pain in my right side aches for hours after.

    What I don't understand is I have a very good diet.

    ie porridge or bran flakes for breakfast fresh Orange juice fresh fruit throughout the day! Salads for lunch or sandwhiches and dinner lots of veg with meat it's very rare I have prossesed food!! I have a couple of days when I have normal formed stools and they are always different colours light then very dark.

    I feel like I have a blockage on my right side I have had X-rays and other test and they seem to be ok.

    I am lucky to have a fabulous IBD team who I can get intouch with and are very helpful. I was on Salofalk and lost most off my hair so they changed my medication to Azathioprine which I got a bad reaction to then was started on Mercaptopurine I thought I was doing ok on that then I just got the dose upto 75mg and started with servre joint pains back, knees,wrist & ankles so my GP stopped the Mercaptopurine I sm due to go and see my IBD nurse next week see what the next step is.

    I get fed up and frustrated.

    • barbara80658
      barbara80658 diane03986

      Posted

      Sorry to hear that Diane. Isn't it awful. Ihave diareah all the time . just the opposite to you. But its all terrible.My consssultant is ggiing to put me on Azathioprine. So im scared now ive heard what it did to you. im losssssing my hair on salofalk also.On sunday i had a lovely dinner Mash green beans. cabbage onion gravy, 2 lamb chops.and i thought i am really enjoying this,But i bet ill suffer and I DID.uP 6 TIMES IN THE NIGHT.THEN THE LAST TIME i had no warning  it just flooded outand by the time i got to the bathroom from the bedroom it was all over i threw knickers tights and even a rug away. i'm fed up of it!!!!  let me know how you go on  good luck xx

       

    • kittd
      kittd diane03986

      Posted

      Sorry Diane only just seen yr post. Do you have ibs too? I do though didn't know you cd have both. Saw my Cons recently & he said the constipation is causing flare up. Given me Movocol to take but I'm worried when it'll work as have lunchtime job & don't want 2 have an accident! I eat healthy diet too. Tried lots of different medications but still bleeding. I'm reading The essential guide to controlling inflammatory bowel disease by Prof John Hunter which someone recommended on here & it's v gd & informative. Hope yr feeling a bit better.

      Kitty

  • diane03986
    diane03986 kittd

    Posted

    Hi Kittd

    I went to see my IBD nurse 2/2/15 I told her about my joint pains she reduced my Mercaptopurine down to 50mg from 75g

    I was on the 3rd day and started with pain in my shoulder. I carried on then 4 days later I couldn't stand the pain I couldn't lift my arm.

    I felt like what i would imagine the pain to feel like if I had broken my collar bone, then the pain went into my back in the middle off my shoulder blades and ribs.

    It was weekend so I phoned out of hour Drs who told me to go to A&E.

    They did bloods and X-ray everything came back fine they gave me strong pain killer which I knew was going to start my constipation off again ( my IBD nurse has a handful of patients who suffer with UC caused by constipation) movacol at hand!!

    The following day I was crippled I couldn't move for the pain it hurt when I took deep breaths. I also noticed I had a lump on my collar bone where it attaches to your sternum

    Off to A&E again they did bloods again ECG, and CT scan, again everything came back fine. I still was crying in agony. They refered me to the Medics which then refered me to rumertology.

    They looked at the scan and said they couldn't see anything so I got sent home on tramodol and Ibpurfin the Dr said we will give you a weeks worth because it's not good for my UC. Then 2 days later still in agony painkillers never touched it I had not slept I went back to A&E I was seen by a very sarcastic young Dr who reminded me a few times that they couldn't find anything .

    He did some special bloods that had to be sent away to London so wouldn't get results for a few days then said he has made me a urgent appointment to see rumertology and to have a MRI scan. Lucky they had a cancelation that day. Hey Ho they found something I am on Prednisolone now which have help the pain finally and I got a phone call yesterday the scan shows I have inflammation all through my bones it's connect to my UC they think??? so waiting for test now on the lump and other things. I have had to take a lot of laxatives due to the painkillers so had bad cramps as well. They have stopped the Mercaptopurine altogether now . I I am waiting for my IBD nurse to get back to me I emailed her about what has gone on.

    I'm sure it's the Mercaptopurine that has triggered all this off.

    I started writing this at 4am this morning because I have had cramps I am waiting to get ready for the toilet run! The pain in my shoulder starts hurting and wakes me up as well but once my steroids kick its gets a lot better.

    I ️A getting a bit low in mood with it all

    • kittd
      kittd diane03986

      Posted

      Hi Diane03986, poor you it sounds like you're having a really bad time. I hadn't realised either that UC could affect your bones. I'm glad they finally diagnosed the cause of your pain and well done for going back to A&E. Sorry you've been in so much pain as well as having constipation. Don't think anyone knows how awful constipation is until they experience it. I've started on new medication called Olsalazine (Dipentum) as Consultant said it has side effects of diarrhoea and should help with my constipation. Bit worried to start it in case diarrhoea starts when I'm out! Which laxatives do you take? I was taking Senna but GP prescribed Dulcolax as gentler on the stomach. Perhaps you could try a different one if you're getting loads of cramps with it? I find it difficult getting the right balance between not being constipated and not having diarrhoea.

      Hopefully your IBD nurse can help you and speak to your Consultant about changing your medication. Do you have a gastro appointment soon?

      I hope you're feeling more comfortable and able to get some sleep. It's understandable you feel low in mood too with everything going on, lack of sleep contributes too. I also feel down sometimes coz you're so restricted but hoping my new medication helps.

      Good luck and I hope you're feeling a bit better.

    • diane03986
      diane03986 kittd

      Posted

      Hi I had to have the lump aspirated the diagnoses is Enteropathic arthritis due to the ulcerative colitis. I'm under Gastro and Rheumotology now. I was started on sulfasalazine which would help both my UC and Arthritis 3 days in the medication I had a bad reaction. Swollen eyes, mouth, tonge went to my GP who advised me to stop them straight away!!

      I have been on prednisolone on and off.

      My IBD nurse referred me to the Gastro consultant its first time I have seen a consultant since being diagnosed with UC.

      He spoke about my inflammatory markers been high but not sure if it's from the arthritis

      He organised a colonoscopy which I had 2 weeks ago the Dr took biopsy's said there was some scaring but everything looked fine. The colonoscopy I had in the past I had no problems after but this one bad cramps back ache and diarrhoea for ove a week. He has also organised me to have transit studies and a ano-rectal manometry which is tomorrow.

      2 weeks ago I was admitted to hospital with a grade 4 thrombosed hemorrhoid and prolapsed it was 5cm in diameter out side of my back passage (that's what the surgeon told me) I was in agony( I thought I had grown a testicle!) The first sergeon who came to see me suggested

      surgery, the 2nd tried to push it back (not good idea!) the last surgeon decided to leave it gave me ice packs instillagel and steroid cream and told me to ride it out nearly 2 weeks of pure pain.! I have been to see Rheumotology consultant she wants me to have physio!! I am now feared I'm going to loose my job due to keep being off work!!

      I'm tired all the time my appetite is poor and loosing weight! X

    • kittd
      kittd diane03986

      Posted

      Hi Diane, you certainly have been through a lot. You must be worn out not sleeping coz of pain & running to loo. Glad you finally got to see a Consultant hopefully they will get you on the tight treatment for you. I winced when you said the Dr tried to push the haemorrhoid back in! Sounds very painful. I suffer with haemorrhoids & can imagine the pain.

      This wk I had a gastroscopy & flex sig as been getting ulcers in mouth & in throat which were so sore. I cd hardly swallow & it felt like tonsillitis. Flex sig was 2 check if UC spread higher up (I have proctitis) coz medication not been working. UC has spread bit more so Gastro Dr prescribed Salofalk enema every night which produces diarrhoea in hope of sorting constipation. Wind pains really bad after flex sig! Having 2 rely more on laxatives or else have pain from constipation. Hard 2 explain 2 people who don't have it.

      It must be difficult for you taking so much time off work especially when you have no choice. I work part-time & worry about being off & also having accidents. It's such a rotten disease that has such an impact on yr life.

      Have you had the ano-rectal manometry yet? Could yr gp prescribe some build up drinks if you're losing weight? Sounds like you're a bit run down which is not surprising with all that you've been through. Hope you're feeling a bit better.

      XXX

  • bena99168
    bena99168 kittd

    Posted

    Hi. I have proctitis also and I've got worse over the past few months. I'm on 4 mezavant xl and pentasa suppositories 1g at night. I've just had a course of steroids that I weaned off about a month ago and I have started with overflow again, everytime I pass wind. I also have IBS and symptoms of diarrhoea virtually every morning where it takes me over an hour to just get off the loo so I can have a shower and get ready for work. I am starting to get panic attacks about little things and worry about needing spare underwear and clothes wherever I go. I feel rubbish and depressed about it and I can't work out what food will help. Too much veg and salad makes my diarrhoea worse. Too much gluten makes me feel rubbish. Eating three meals makes me cramp and overflow and lots of small meals doesn't help either. Can anyone offer advice? I think I might end up on azathioprine.

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