Crohns colitis but then told it's not advice badly needed please!!!!

Hello I'm new to think but would really appreciate some help and advice.

Last year I was diagnosed with crohns colitis following a colonscopy...ulcers and inflammation at the bottom of my large bowel and near rectum. I was commenced on steroids. But nothing seemed to help with pain and bowel habits. So I was then advised I may need to try a chemo tablet don't no the name but my consultant said it may help better than steroids I was on. But explained also it had bad side effects to gave me another type of steroid in mean time till I decide. As it would make me have to get my bloods and bone narrow checked every 2 weeks. So during this time I took time to decide but I was admitted into hospital with extreme pain and bloating...and another colonscopy was done and the consultant then explained as my bowel looked clear they may have misdiagnosed diagnosed me. I was extremely upset so I changed consultants. So my new consultant said he didn't think I had crohns that it was ibs. And started me on more medication which didn't really help. After mri of small bowel which was clear...I had endoscopy which showed inflammation of my dudeum and stomach and top of small bowel and postivutr faecal sample for inflammation so I was started bacj on steroids once again without dosagnosis. As time went on my symptoms settled. Still getting pain and abnormal constipation and diahorea but pain reduced. But still with no diagnosis my consultant is determined it may have just been something I ate that day like a curry which I think is laughable. Due to pain and all my symptoms I believe they r related to my menstrual cycle so I am now under investigation for endometriosis and currently going thro medical menopause to check. Sorry this is so long. Anyway recently my bowel have started up all over again bloating alternate habits...bleeding from rectum...tiredNess.

Anyway if u have read all this I am very grateful. My ultimate question was is happen do I have crohns or was it misdiagnosed. I have lost all trust in doctors. I believe I do have endometriosis as injections to help my pain but my bowels r crazy. And as I seen myself the inflammation and ulcers could I still have crohns?

Thanks u so much

22 Replies

  • I have had Crohns for about 15 years and have now been in remission for the last few years and "touch wood" hope it stays that way as they had wanted to do surgery just before I went into remission. I can't really offer much advice for your particular situation and diagnosis dilemma. I had used steroids from time to time but was never on them long term like many who have Crohns so have been lucky that way. I can tell you that I had a lot of bloating, weight loss and bad diarrhea for a quite sometime and whether it was coincidental or not probiotics and daily yogurt containing probiotics eliminated my problems for the most part.

    As I mentioned I can't say it was the probiotics but about 10 days after starting daily yogurt and probiotics things started improving for me. My Crohns is at the end of the small intestine and I know Crohns in different areas of the digestive tract can give different symptoms and different problems so what works for one may not work for someone else. This is by no means an endorsement ore recommendation to try or do anything, and it is always best to discuss any changes you make with a doctor.

    I hope you get some answers soon and can begin a treatment that will give you some relief.

  • Thank so much for the reply really appreciate it.

    Thanks for all ur advice I will certainly try some of these. Ur story sounds awful to the fact u have crohns but I am glad u r in remission at moment.hope it continues. I'm going between gastric and gyn for my issues. I just can't get over being diagnosed to then be told it may not be. It's a roller coasting and really at my wits end. Just had my inflammatory markers checked again and another colonscopy booked soon so hopefully shed some light soon.

    Take care thanks again

  • I sure hope I can stay in remission as well. I know every time I have had a major flare of my Crohns where I lost 20-30 pounds it has been after a stressful event in my life. I know after I was diagnosed with Crohns I was send for another test and the person doing the test said are you sure you have Crohns which made me hopeful I didn't actually have Crohns but when I had a barium swallow test he showed me on the fluoroscopy where the Crohns was and it was very obvious. I hope you can get a definitive diagnosis so they can start an appropriate treatment rather than leaving you hanging like this not knowing as that is usually worse than knowing.

    I also started taking Lactaid before having dairy and that has also helped quite a bit. I haven't been on any Crohns medication for a few years now so will keep doing what I am doing and try to reduce stress as much as possible and pray things continue as they have for the last few years as I had quite a roller coaster for several years as well.

    Good luck.

  • Well after I was diagnosed last year I was on 3 rounds of steroid treatment and then had colonscopy and that's when they said I don't have it which to my knowledge obviously the steroids had cleared it up it wasn't active but I still had it. I certainly don't want it but it's yhe waiting in limbo not knowing what pain is.

    Thanks so much stay positive and keep doing what u r doing. Fingers crossed u stay pain and flare free

  • Crohns and Ulcerative Colitis are apparently difficult to specifically diagnose - I had question marks over which, then convinced it was UC, had to have surgery. The symptoms stabilised, but weren't gone completely (5 years after surgery). I eventually got seen by consultants here (long story, but involved moving house a lot and reluctance from a local health authority to see me, as I lived in one are, but all the previous surgery and my consultant was in another). They now think that the final bit of my bowel, used to attach my pouch to my rectum has UC remaining and that with scarring is causing issues. That took over a year to establish.

    It's frustrating, but the best advice I can give is to let the docs do their thing - they may need to stabilise your condition before they can give a definitive diagnosis which can then lead to treatment. In the meantime, other things may change, that affect your condition. The fact that they that they had a diagnosis, but then you returned and all signs had gone, probably threw them, but then your symptoms returned.

    Good luck and stick with it - it's easy to say, but stress is believed to be a trigger, so getting overly stressed by the situation may make things worse and I would do anything to avoid more gastro surgery!

  • Hi kmlittle

    Your problem seems the same as mine! I had bad bowl, stomach and throat problems it started in sep I felt nausea bad pain in my bowl (server cramping) had very loose bowls anything that hit my stomach went right through me!! I eventually went to my gp as by then i was sure it was not a stomach bug, but my gp diagnosed a stomach bug and sent me home I went on like this for a further 2 wks I went bk to the gp and again a stomach bug was diagnosed I challenged this but got nowhere!! I became really I'll I made it bk to my gp who again said its a bug...but she did take blood.. the next day my vomiting became worse I called the gp and told him I was vomiting red stuff up and felt I needed to be in hospital he refused anyway I got to my hospital by ambulance my blood tests showed a massive white cell count and a low red cell count I had massive inflammation in my large/small intestines and my stomach and throat!! I had a body scan which showed the severity of the inflammation.I managed to have the camera down my throat but could not have the camera in the back passage as I was still passing blood, my stomach showed H pylori I was discharged on 18th Nov 2015 and I had the camera in the back passage at the end of jan2016 like you it showed no colitis eventho the castro consultant said it was colitis,,my biopsys were clear he also put me on steroids for three months and some stuff to help my bowl with absorption,my question is what happend to me I was in hospital for seven days and on three drips!! If it wasn't colitis what the hell was you I still have flare ups but gp says its IBS😤 also I have lost all faith in doctors too!!!😕

  • What an awful time it's ridiculous. Ur story sounds awful and similar in ways to me. I am under investigation for endometriosis at moment so going thro medical menopause. And had mri which may have shown a mass. But still unsure. I seen my gastrointestinal doctor who gave me instillagel for two weeks. I have fistula at my rectum and bowel flaring again badly can't eat anything without huge bloating and pain. All my symtoms r so muddled. My advice would be to push and push u don't get anywhere without pushing and being forward with things. I was a nurse before all my work fell apart and I can no longer hold a stable job due to my illness. It's torturing. Never give up.

  • Have you considered being Gluten Free ? Also have you had your thyroid tested ? Click onto my name to read of my journey - sometimes a very bumpy ride - but as I hurtle towards 70 things are good :-) There is so much we can do to help ourselves.

  • I'm nobody special, and I had (past tense) moderate UC, although it never felt moderate. I think you should buy some silicon rich mineral, Volvic, Brecon Carreg, S. Pellegrino, Fiji, etc. Drink 1 litre/day, and I bet you've had loads of vaccinations. When the stool gets too wet (water) try silica capsules from health store.

  • Please don't ask why, just try it, a silicon rich mineral water like Volvic, Brecon Carreg should help. Drink 1 litre/day, when you think it's only water amongst stool, try silica capsules from health store.

  • I have thought about gluten free but I have had all the food allergy tests done and thyroid check numerous times x

  • Sorry have only just found your reply. Click onto the word Reply in the little green box beneath the post to which you are replying so the person gets an alert :-)

    Often the Allergy tests do not show gluten sensitivity. Even specific testing for anti-bodies can be negative. Why not give it a good try and see how you feel. The gluten of today can cause inflammation in the gut - opening the door for other problems.

    I have been gluten free for over 3 years - I have Crohns and Hashimotos - and my thyroid anti-bodies are reducing at last after 11 years.

    Regarding the Thyroid - I bet you only had the TSH tested and your GP declared you normal. Well that is only part of the story - you also need the FT4 - FT3 and Thyroid anti-bodies tested. I have been on the Thyroid UK forum here on HU for over 4 years - where there are over 41,000 people sharing their problems and information. I have learned a great deal. So I read on a daily basis how poor the diagnosis of Thyroid and B12 deficiency is - and also the treatment.

    We have to read and learn for ourselves sadly.

    Click onto my name above and you can read my journey to wellness - the edited version :-)

  • Hello I have been gluten free sugar free and wheat free for over 2 months now and no difference at all. My pelvic and abdominal pain is still the same with same symptoms up and down weight it's really getting me down. No one is listening. As far as test results my consultant says he has done them all. Not hundred percent sure about thyroid one tho. Could that cause inflammation and all the pain bleeding etc?

  • No the thyroid would not be the cause. However the most ACTIVE thyroid hormone is T3 and there are receptors in the gut for this hormone. Millions of them. So if the T3 is low then things begin to go wrong. Sadly the NHS RARELY tests the T3. Just one of the many problems in health today.

    Always obtain all copies of your test results for your own records. You need to monitor your OWN health. It is your legal right.

  • Yeah I am in the procedure to get my medical records for my own purpose. I just don't no what to do next maybe I could get appt with gp to test my t3 also thanks

  • Am not sure they would do it. I do not know how old you are - or how long you have been ill. My understanding is that the longer you have been ill - the longer it takes to heal. Old Greek wives tale :-) I have had Crohns for over 40 years and after years of surgeries and ill health I am now as fit and well as I can be.

  • I've been not well for 2 years with crohns symptoms. Diagnosed last year with crohns colitis following a colonscopy then told I don't have it following another while on steriods. I'm going down gyn route to to see if it's endo I have but both saying no its ibs. But I know my own body there is something going on in ill really ill but it does seem to be every month like a cycle thing in I'm in bed for full 2 weeks really ill unable to eat no energy bleeding then I get maybe a week and half where I'm still pained but can move around with painkillers. I'm 26 years old x

  • You may need longer being gluten free - as it can take a long time to heal the gut. Be wary of hidden gluten too - it's everywhere. You may need to try giving up dairy.

    Have you researched Turmeric ? VitD ? Do you know your VitD level ? - bet it's low. Both are anti-inflammatory.

    What books/websites have you read ? - so much information out there. Awful for you to feel so poorly.

  • What metal is used to provoke an immune response? Aluminium. So no wonder people are getting so allergic these days.

  • This may seem a bit odd, change the water you drink to a silicon rich mineral water, Volvic, Brecon Carreg, S. Pellegrino, Fiji, any like this, Google em. It will taste different, but with me it enabled me to have a complete evacuation of very soft stool. It should make you feel as if your intestines are full of liquid. Did me. I'd seen silica capsules for sale(health store), took them as a test at first. I thought it calmed my colon, stool dried up things. Calmed down the intestines, normal function resumed with me, 12 years of hell. But I still drink the Volvic, start a couple of bottles to see if it will work for you. 1 litre/day to start then cut back, but stay off aluminium cleared water. Good luck.

  • Does this actually stop the pain and inflammation if it's there I've tried new diets and only drinking water even starving myself to try and help with. Thanks

  • I can only go by what I've done, the water that works for me is Volvic, though some say they don't like the flavour, me I can't get enough, my idea stems from a prof at Keele Uni, Birchall Centre researching Alzheimer's Disease. He had people drinking 1 litre/day silicon rich mineral water to test their urine for aluminium.

    Well, I hate the bitter metallic taste of so-called potable(drinkable) water. As I'd UC for 12 years, bouncing from flare to relative normality (on steroids), of steroids, countdown to a flare again :-( I know that vaccines cause brain damage, often digestion/bowel malfunctions. So I looked into vaccinations, as we had used aluminium kettles and other pans, I knew it tainted water.

    I thought it won't hurt to try, so bought couple of bottles to try, they're better cold. Didn't write it down scientifically, but then we are all different. Firstly it emptied my bowels after the first bottle, I didn't have such an irresistible urge to defecate as before, but it was quite important.

    Lavatory over, such a relief. I continued the water, stool forms, but with alot of liquid. As luck would have it I'd seen silica capsules at a health store. Silica silicon, looked up what is silica, apparently it's an essential element. Plants cell wall strength, we eat plants. First capsule (made from Bamboo/Horsetail), it started stool reforming liquid in my intestines went, solid stool back, and that general feeling of malaise went. Ill start playing on my ergo (rowing machine) soon as the man at the wine shop commented on my checks getting fatter (probably too many Lattés).

    Since I wasn't taking any of the meds that never helped my UC, I thought if I get worse that wasn't working. It worked for me, never instantly but then I'd had UC for so long Salofalk was misery, I only soiled myself with the first one. :-(

    Can't give the water up, b/c I had a flare while drinking ordinary tap water. That's how I deal with it. While on a flare had steroids to calm the intestines, and returned to he water. It might help you, it might not, but for me accepting this was never ever an option. Good luck with however you decide to go.

    For myself aluminium is the cause of my UC, I believe.

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