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So swollen, not sure what to do anymore

Posted , 4 users are following.

Mummajojo1978
Mummajojo1978

Hi all

Really not sure what to do, hope someone can advise me?

My tummy has been so swollen for several weeks now. I'm on asacol 800 x 3 in the am & all my other jollop that I have to take & the inflammation doesn't seem to have reduced. I have an app with my consultant on Tues to discuss my confusing condition as following my colonoscopy & biopsies, they're now not sure if it's UC or CD! I'm starting to worry about it now as it's hard to bend & sitting is so uncomfortable. I ate very little yesterday & felt so bloated all day. Surely this isn't right or is it a known side effect? I was diagnosed on 22.8 & started meds on 26.8 so I know it's early days but wondered if this could be something else like a cyst? Should I se my gp or wait for my app on Tues?

Any advice would be much welcomed. If you're out there Jill, the buscopan worked for a day or so & then it came back so gave up with it. Did u get these symptoms for this long? My tummy feels like it's full of air or fluid when I push it. I don't have a Kate Moss body anyway but I look pregnant again :-(

Help!!! 

xxxxx

0 likes, 23 replies

23 Replies

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  • fiona73907
    fiona73907 Mummajojo1978

    Posted

    Hi, I have crohn's and uc. pretty mild nowadays though, have had it for nearly 15 years, I don't get diarrhea very much when I flare but do get swelling and very tender abdomen, I find that a heat pad or heated bean bag helps and camomile tea. Don't know if this may help but anything is worth a try!?!
  • jill18833
    jill18833 Mummajojo1978

    Posted

    Hi Jo,just wondered how you got on with consultant? All good I hope xxxx
    • Mummajojo1978
      Mummajojo1978 jill18833

      Posted

      Hi Jill

      Well he was still just as arrogant but actually gave me eye contact this time, maybe because I had my hubby with me! Asked him loads of questions again but he confused me even more tbh!

      Told me I had to have diarrhoea to be in a flare but was told different by my gp. He said that the pains I'm getting are not related to my UC, he thinks that I have that under control so no further meds prescribed for that. He now thinks I may be lactose intolerant or have ibs or both so gotta start on a lactose free diet for 3 weeks and see how that goes. If no change then a wheat free diet for 3 weeks. Seeing him again in 6 wks. He said it's fine to take buscopan if it helps.

      Lactose free diet not started well as got up at 5am with my little one and had a coffee with cows milk! Still half asleep & a bit worn out after my nans funeral I think! Start again tomorrow :-)

      I asked for tests to determine what disease I have and he sort of chuckled and said it's very unlikely I have Crohn's as I look too well and the tests are very invasive and he's pretty confident that I have UC. He said if a change in my diet doesn't sort out my symptoms then he'll look into running some tests but wants me to try this first which is fair enough.

      How's things with u lovely? xxxx

  • jill18833
    jill18833 Mummajojo1978

    Posted

    Hi Jo,as I said before I think the more of your colon involved the more likely you are to get diarrhoea.As you had it at your initial flare I think you will probably get it again if you flare? I never had diarrhoea so that initially confused consultant! Because I get pains every couple of days doc thinks I have IBS too,apparently common to have both! I tried lactose free,wheat free,gluten free etc etc but didn't seem to make much difference but may help you,we are all different! Although I go 'big jobs' twice daily doc thought I was constipated thus causing pains.Gave me Movicol which helped for few days but then pains back,so frustrating trying to work out what causing pain! Even gave up coffee at one point! Now trying Windeze to see if it helps pain and bloating,have got a pharmacy here!!!!! Will try anything tho as these pains drag me down. Funny how I get two/three pain free days tho? I don't think your flaring either,think you would be running to loo etc,blood and very tired? Just to cheer you up I was told if you have to have one disease,UC better than Crohns. Let me know how your trial of foods help and I will let you know if Windeze helps me!!! Think we are having very similar pains,are yours every day Jo,how long does pain last? Good luck and keep in touch xxxxxxxx
  • jill18833
    jill18833 Mummajojo1978

    Posted

    Hi Jo, just wondered how the lactose free was going? Any improvement in the stomach pains? I am about to start a restrictive diet again myself,must get to the cause of these cramps! Xxxxxx
    • Mummajojo1978
      Mummajojo1978 jill18833

      Posted

      Hi lovely

      So good to hear from you as had an awful day today and could do with your words of wisdom!

      The lactose worked well but after a few days the cramps came back. I decided to start gluten free today too although was told to do both for 3 weeks but don't see the point as I know it's not just lactose that's causing these cramps. 

      I had bloods taken at my last visit (2 wks ago) to check for coeliac disease as was showing signs, not heard from consultant so chased up results today and the secretary told me that my blood couldn't be tested as it had gone off as was collected too late! No apology, just told me to sort it out with my docs which has taken me all afternoon to sort out. I've got another blood test booked for Weds am but have to wait a wk for the results :-( My consultant and his lovely secretary are really turning out to be a waste of time. I told my gp that I feel like I don't know where to turn anymore and she said not to worry and in future to go and see them with any problems and they'll try and help me out the best they can so no longer do I feel isolated.

      I've been in so much pain Jill and am still so swollen & now bent over in constant pain. Buscopan, windeze, all other OTC meds don't seem to touch it so doc has put me up some anti spasm meds, just hope they help! 

      I'm annoyed that I can't start my gluten free diet until Wednesday now as I have to eat normally up until my bloods are taken.

      I looked at the symptoms of coeliac disease today and I seem to tick all boxes, u checked it out at all Jill? My Aunty said that the tests aren't always conclusive for coeliac disease so even if you're not diagnosed with it, you still could have it. 

      I'm probably the biggest fan of bread you'll ever find. I love my hot crusty bread with a slab of butter on so going gluten free fills me with absolute dread but I'd do anything to alleviate these pains. I can only describe it as childbirth contractions/trapped wind pains but low down. Sound familiar to you Jill?

      What diet are you about to explore then?

      It really is so good to hear from you and especially today. I've been beside myself which isn't like me & felt so lonely as nobody seems to understand what I'm going through so thank you! Where in the world do u live Jill? It'd be so nice to meet a fellow UC sufferer xxxx  

  • jill18833
    jill18833 Mummajojo1978

    Posted

     Hi Jo,so sorry to hear you're still in pain.If you were in a massive flare I could understand it but not as you appear to be in remission? Pain exactly like mine,below belly button low down,cramps,windy,period type pain that lasts hours? Still get mine every third day??? After lunch and can last well into evening? Have now got Mebeverine from docs and going to experiment taking every third day to see if it prevents pain??? Like you,things seem to help for several days then back to pain,very very frustrating. I have tried loads over the last two years but nothing helps for long. Was going to try lactose free again? As for Gluten/Wheat I too love my bread! Read somewhere that Lactase is produced in colon lining and makes sense if lining is damaged hence we can't digest Lactose????? Between us we will crack this mate,our present symptoms are SOO alike! Lean on your docs and persevere! Hot wheat pad on belly for pain?? Will let you know how Mebeverine works,is that what you've been given? We are in Kent,shame we are not nearer? Keep in touch Jo xxxxx
    • Mummajojo1978
      Mummajojo1978 jill18833

      Posted

      Hi Jill

      Sorry for the delay love, been one of those weeks! 

      I don't get all this either?! Been on lactose free for 2 weeks now and I started gluten free on Wednesday and tbh I seem to be getting worse cramps and feel lower in myself but adamant that I want to see if this is the culprit so gonna ride it out for at least another 5 days and can then tick it off! I wonder if the swelling is due to a cyst because hardly ate anything yesterday & by the end of the day I looked huge again?!

      My GI told me that food plays no part in uc and its recovery so haven't looked in to foods that aggrevate it online but now I have and I swear its that. I ate broccoli, raw onion, mushrooms in the week and literally had to crawl to bed after eating a cheese and onion sarnie so I'm gonna do this diet next, take out all food groups that people have listed can affect uc - worth a try eh?!

      Doc put me on me mebevereine too (correct spelling?!?!) Started taking them on Wednedsay but can't say I've noticed a huge difference, have you? I take them when I need them but might start taking 3 a day and see if that helps?

      Good luck with the lactose free - you started it yet? It helped for a day or so and then came back for me. Hope it helps u hun.

      God I feel so bad for you as you've been going thru this for 2 years and it's so early on for me and I'm tearing my hair with all this so god knows how u cope with this mate.

      My back is awful atm too, I feel about 90 when I get up in the morning & look it! 

      My GI's secretary phoned yesterday & the lab did check my bloods for celiac in the end & test came back clear. Had to have another test taken on Wednesday because of this useless secretary so be good to check that it's definite! doc tested my organs too inc kidneys so should get results today. Was soooo chuffed that I'm not celiac, don't think I could do this gluten free for the next 45 years!! 

      Gutted u live in Kent mate, house prices are much better in Gloucestershire, fancy living in the Cotswolds?!!

      Im so lucky to have found you Jill as you're the only one who I can talk to about all this.

      Hope u enjoyed reading my novel, best go and tend to my kids! 

      Loads of love to u xxxx

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