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Indeterminate Colitis Proctitis – Eleanor’s Story

eleanorMeet Eleanor:

Hiya on here for some guidance ans support to my recently diagnosed diseases and help and advice about pain management and urgency

I am a single mum of 3 kiddies ans am a mature degree student currently separated from my husband of 3 years

Her Colitis Symptoms:

Blood mucus urgency to.toilet dry eyes bloating pain in abdomen

Eleanor’s Story

Hiya I am in the beginning stages of my second flare.

I have had this for around 3 months and the last flare was over a year ago which had lasted for a year and resulted in my diagnosis.

I was wondering if anyone can advisee me any tips on managing the urgency and pain and weakness as I have a high demand uni course ans placement to attend ans it’s not possible at the moment with these symptoms. This box is telling me to continue h with my story so I will try not to bore you. An recently separated from an abusive unsupportive husband which I believe was adding to the disease symptoms. I am.trying to learn to run to help with my overall health and attend a gym at least 3 times a week.

I look bloated most days and have suffered from lower back and joint pain. I am in a state of limbo regarding my diagnosis as a flex sig showed indeterminate colitis buthe biopsy results were not consistent and the ibd nurse overruled the consultants diagnosis with an ibs and proctitis diagnosis. I disagree hugely as I am now symptomatic again and she couldn’t tell me.why the blood and mucus had been an issue for over a year if it was only ibs! I am very angry with her and not sure what to do about it nowas as there is only that hospital in my area to attend.

Can anyone recommend a diet to eat in a flare?

Or what to drink?

Are prebiotic any good? Tablet or the drink form?

Does anyone have any advice for me to ease this pain?

Thanks for reading this sorry if it’s all over the place and confusing!.

Currently using mezalasine rectal foam. Immodium. Buscopan and paracetamol

Some Medications / Treatments:

I avoid all green vegetables high fat foods and caffeine when flaring.
I try to exercise daily

written by Eleanor

submitted in the colitis venting area




proctitis

22 Responses to Indeterminate Colitis Proctitis – Eleanor’s Story

  1. Amanda October 31, 2016 at 3:21 am #

    Firstly, get someone to talk to about this. You say you don’t want to bore anyone. It isn’t boring anyone. Your health is your primary wealth. Counselling helped me to move forward.

    Diet you can find all sorts of details but most people seem to follow the SCD, I don’t, I focus on my emotional wellbeing and that tends to sort out the rest of my body. I LOVE my carbs so no one is going to tell me to stop my toast and eggs for breakfast. Yum!

    But there is no denying cutting out all forms of sugar really helps speed up the healing process.

    It sounds like you have been through a traumatic experience one that needs proper acknowledgment and work to resolve. Good luck, the pain can reduce once you learn how to relax the mind. It’s hard going, but yoga, meditation, nice walks all help.

    I hope you find a solution that suits you

  2. Eleanor
    eleanor October 31, 2016 at 3:27 am #

    Oh thank you x I can’t cut out carbs they are a mainstay in my diet. I can’t have green vegetables too much onion and caffeine etc as it is if I have to cut out the carbsn I’m left with a very limited diet. I tried the low residue low fibre diet for one week and brought on horrendous constipation and I am only now recovering from that. I have no help with this disease atm due to the mixed diagnosis and am basically left alone to it and it’s scary and I just don’t know what level of pain or discomfort I am supposed to get to before phoning the ambulance! It’s ridiculous! As for exercise I love going to the gym and up until this new flare a few weeks ago started I was learning ro run and doing weights. Now I’m lucky if I can walk to the car and back without a nap! Also is it normal to vomit with the bowel movemwnts? I think it’s the pain and the pushing combined to result in the sickness? It’s a worrying complication!

    • Robin S
      Robin Saul October 31, 2016 at 3:00 pm #

      I am so sorry you are going through a flare up. Firstly, are you able to ask for prescription medications and get what you need? I agree about something different than a suppository- in the USA we have Mesalamine liquid enemas given at bedtime and you hold the medicine in your rectum overnight. I did them when I had your symptoms and although it was difficult it did help. So did Codeine for the pain.
      Try your best to reduce the stress in your life. With an ex and kids and school your plate is very full. Instead of running and weights try stretching and breathing exercises. Child’s pose helps the pain.
      Also, take gluten and sugar out of your diet. Eat potatoes for carbs.
      The most important thing is a proper diagnosis. Maybe you could go back and speak to a supervisor.
      I hope you feel better soon.

  3. Travis October 31, 2016 at 8:04 am #

    Hi Eleanor,
    If you have proctitis get your doctor to put you on sulofac 1000mg….its a suppository and if your flare up is pretty bad take one in the morning and one just before bed…If it’s not a bad flare up take one just before bed…if your flare up is bad and this just isn’t doing the trick ask your doctor about getting you on cortifoam and sulofac in the the liquid form. Both of these need to be taken rrectaly. The cortifoam in the morning and the sulofac liquid just before bed for 2 weeks. All of the inflammation will be gone. The reasoning for the liquid is because the inflammation is a little higher in which the suppository pill doesn’t get to. Hope this info helps you. This is currently what I’m on and seems to work and is much better then taking a whole bunch of crap with crazy side affects.

  4. Chris October 31, 2016 at 9:09 am #

    I love my heating pad for my pain. I lay it across my lower abdomen and it really helps. It goes in the microwave and I have one at home and one at work. Good luck to you.

  5. Juliet
    Juliet October 31, 2016 at 1:26 pm #

    How can a nurse over rule a doctor’s diagnosis?

  6. Eleanor
    eleanor October 31, 2016 at 6:11 pm #

    I have no idea. She’s phoned me a s said it’s a proctitis after he had written indeterminate colitis and starated me on meds. I have no treatment at the moment other than the salofalk my doc prescribed me. I have been lost in the system at the hospital now and will have to begin the diagnosis process all.over again it’s heart breaking.

  7. Eleanor
    eleanor October 31, 2016 at 6:12 pm #

    I also have a heating pad the microwave kind.! It has straps that go around the back so you can wear it.

  8. Eleanor
    eleanor October 31, 2016 at 6:14 pm #

    And thanks for the meds advice Travis I am going to be going to the docs in the morning and pushing for sone alternative medications so this gets under control.asap x habent left the house for longer than a half hour in 2 weeks my life is on hold like

  9. Allison November 1, 2016 at 5:21 am #

    It’s a nightmare disease isn’t it! I’ve had left side colitis for 9 years. Last 4 years been bad. Having a severe flare since mid aug and just out of hospital on IV steroids. Now started on Infliximab but still very poorly and lost loads of blood. Been bed bound for over 6 weeks. I take Movicol to stop constipation but will stop those soon. I have been on a restricted diet, mainly sweet pots, carrots, protein, rice, cheese, eggs, porrage, rice crispies, occasionally bread. Soaking linseed and putting that in porrage is good for constipation too. The consultants are all about the next drug so you have to do your own research and trial and error regarding flare diet, we are all different so some things work for some and not others. Be gentle with yourself… and do not push and strain while on the toilet!! Rubbing the lower back helps and always a hot water bottle at night! You need some meds to get you in remission, good luck with everything x

  10. Eleanor
    eleanor November 2, 2016 at 11:52 pm #

    Oh Allison I am.not as bad as you that sounds totally horrendous x x I can’t imagine being hospitalised as i am only 3 years in with this ans still in the diagnosis stages x your advice regarding In seeds I am going to take you up on as I am scared to death of that happening again x horrendous x at least with the frequent bm u can use vaseline and heat and get sone releif the constipation is crippling and so draining x I didn’t realise you weren’t supposed to strain as I saw somewhere to push whenever you csn to get it all.out! X x I started sone pred foam last night ans it worked very quickly last time so I am hoping and praying that’s the case this time x 3rd flare so far and Deffo the worst x x thanks foe the comments xx

  11. Robin S
    Robin November 3, 2016 at 6:39 am #

    I am so sorry you are going through a flare up. Firstly, are you able to ask for prescription medications and get what you need? I agree about something different than a suppository- in the USA we have Mesalamine liquid enemas given at bedtime and you hold the medicine in your rectum overnight. I did them when I had your symptoms and although it was difficult it did help. So did Codeine for the pain. That was back when the docs here were less restricted writing scripts for pain meds.
    Try your best to reduce the stress in your life. With an ex and kids and school your plate is very full. Instead of running and weights try stretching and breathing exercises. Child’s pose helps the pain. Have your kids give you back rubs too.
    Also, take gluten and sugar out of your diet. Eat all kinds of potatoes for carbs and just cut any junk foods.
    The most important thing is a proper diagnosis. Maybe you could go back and speak to a supervisor.
    I hope you feel better soon.

  12. Eleanor
    eleanor November 3, 2016 at 6:45 am #

    Yes 3rd flare in 3 and a half years x I am currently taking prednisone rectal foam. It’s like a miracle med for me so far. I have an urgent referral appointment in for a procedure to get diagnosed properly so fingers crossed I will know soon. Yes I think I am probably better turning to stretching for a while at least until I’m in remission as the running is just too bouncy for me at the moment! It’s annoying as I have been learning over a period of around 8 months and now all that will go and I will have to start from scratch.so annoying!

    • Robin S
      Robin November 3, 2016 at 6:53 am #

      Just be kind to yourself! This flare will pass and you are on the right track with an urgent referral appointment.

  13. Allison November 3, 2016 at 12:24 pm #

    This time of year is always the worst for flares too. Seen my consultant today and discussed operation if Infliximab doesn’t work, sounds bad but when UC starts ruining your life you come to accept it. Hopefully it won’t come to that so going very steady. Do yr research and as said above cut out all additives, sugar and gluten if poss, cook from scratch, look into probiotics, l glutamine, aloe vera. My mistake has always been leaving the flare go too long to avoid prednisolne, trying other things that didn’t work and ending up on pred in the end. Good luck everone with the healing

  14. Eleanor
    eleanor November 3, 2016 at 12:30 pm #

    I wish you well. With the decisions you have to male regarding your operation x x I can imagine anything would be preferable to a life of pain discomfort embarrassments and hospitalisation x I am so confused with all the diet Advie I just don’t have. Clue x have tested for coeliac and come back negative so not going to drop gluten just yet x it’s in everything imaginable and I don’t see how I will be able to live like that without serious training on nutrition and this disease x x currently experiencing constipation and the pred foam seems to be stopping me all together nowith x so another night/day of fun ahead I’m sure xxx take care eof yourself and thanks so much for the feedback xx

  15. Allison November 3, 2016 at 1:36 pm #

    Ask to see a dietician and ask for diet info for UC flare at hospital when you are next there. It’s hard to cut out gluten… i haven’t managed it yet as i occasionally have bread. Even if you tested negative to coeliac you still may be gluten sensitve. I got a good book called The Diet Myth by Tim Spector, from amazon for under £5 which is very interesting. Hope you have a smooth night xx

  16. Laurie Park November 12, 2016 at 2:32 pm #

    Hi Eleanor.
    its a tough road but can be managed. I’m 59 have had this colitis/ulcerative colitis since I was 25.
    To manage the condition you need to understand yourself and do lots of research. Most GP,s will prescribe you medication and some of this will be helpful and others useless only you can determine that on based on what works for you.
    I will suggest what has helped me:
    Read “Wheat Belly Total Total Health” by Dr William Davis.
    I say this because you need to eliminate as much as possible wheat and grains from your diet.if you don’t understand the scientific principles behind eliminating wheat there is little chance you will achieve the aim.
    Look at and think about the principles found in the Paleo diet.
    Eliminate all processed food
    Eat “Paddock to plate”
    When possible eat organic.
    Drink lots off fresh water
    Don’t drink any form of “soft drink”
    Tea and coffee ok when not having a flare up
    Peppermint tea very good
    When having a flare up only drink water
    Find a fresh probiotic formulated for IBS
    Have only hard dairy (no soft dairy)
    Research alkaline diet
    Research food combinations ie not mixing carbs with protein etc.
    introduce good fats into you diet like eggs , olive oil etc.
    Get sugar out of your diet
    See a psychologist.

    My current medication
    Pentasa
    Colifoam as needed
    panadiene sometimes
    magnesium supplement daily.

    The above principles have helped me manage my condition, at 30 I was to sick for an operation for surgery (thank God for no surgery) and weighed 65 kg.

    I have been able to get back to Karate training , I now weigh 84 kg and recently were grade at 4th Dan black belt. So I recon the principle I have followed have worked for me. Will it work for you? I think its all about doing lots of research and understanding what works for you.
    Good luck ,sorry no luck in it, its about your research and the effort you put in to finding what works for you.
    Keep smiling

  17. Eleanor
    eleanor November 13, 2016 at 5:29 am #

    Thanks Laurie all wonderful tips for me x I have decided it’s time to concentrate on my diet as I eat so badly always have! There’s so much info I need to sit down with someone and work out a meal plan for my own guts ansmdt stick rigidly to it.I am afriad to eat anything atm as it all hurts me . I am caffeine free now and limiting garlic as these two things are also triggers for me alongside the onions green veg and too much fibre. I need a proper nutritionist to help me I’m hoping after my scope to talk to a professional asap. Thanks so much and I’m heartened to hear of your karate achievements! I just want to run! Xx thanks again

  18. Allison November 13, 2016 at 8:08 am #

    Brilliant advice Laurie and this is the road i am going on… gluten is the last one to go. I had my 2nd Infliximab last friday and it seems i am finally slowly turning a corner after 3 months severe flare. Wish i’d have done research years before but have done loads now and it all corresponds with your comments Laurie! Keep going Eleanor you’ll get there! Happy healing everyone

  19. Denyse November 19, 2016 at 1:25 pm #

    Hi to all u ucers, I pray for healing for us all. I was diagnosed with ulcerative colitis since 2015 June. I’ve been up and down with meds, the only thing that seemed to work for me was prednisone. My doc said IV had enough of that so I started humira in sept. I’ve had five doses so far with some improvement. I’m down to 8-10 movements from 15-17 times. I’m also using methotrexate so my energy level is very low I’m afraid to drive myself to work. I feel very weak. I need to come up with a diet for uc that works with a warfarin diet as I had heart valve replacement. I’m keeping the faith and taking it one day at a time.

  20. Graham from England
    Graham November 20, 2016 at 9:35 am #

    Hi Eleanor,

    Stress is definitely bad but we all have to put our bodies on the line for our families etc. I know it will shorten my life but we have dependents.

    I had lower back pain for years and constipation/UC which both improved greatly with EVOO. Its the most healthy food in the world, proven to relieve pain (oleocanthal) and help UC in trials. A good quality early harvest extra virgin olive oil is a must. I take 15ml on an empty stomach before breakfast, lunch and before bed. It’s been the discovery of my life and does work for UC’ers though not all. It’s also great as you are adding something good and not eliminating something from your diet.

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