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Endometriosis UK
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Endo and crohns

How many of you have endo on the bowel or crohns disease? Even though my stool test came back negative a year ago for crohns I worry I might have it but I already worry too much and it might just be my endo on the bowel 😮 I worry because I'm still loosing weight even though I'm not being sick just nauseous 😮 I do eat less than I used to because I cant stomach big meals anymore 😭 I have changed my diet removed gluten and started eating healthier so now I'm not constantly nauseous I have weeks nausea free then suddenly out of nowhere I get nauseous for weeks for no reason 😮 I also go from constipated to lose stools 🤦🏼‍♀️ All these symptoms began after I fell ill now I still dont catch viruses very easy but when I do my body shuts down 🤦🏼‍♀️ I've also since getting ill developed exercise induced asthma and I think I have anaemia 😭 some of my family members have crohns I would ask them but my family keeps telling me I'm fine 🤦🏼‍♀️ I just wanted to know if this is just symptoms of endo on the bowel or something else 🤔

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Hi Abi :)

I understand the worry, I have bowel symptoms like yourself going from constipation to diarrhea, nausea etc along with other bowel symptoms. I definitely think it’s the endo and they suspect it’s rectovaginal and bowel, I’m having an MRI on the 20th so hopefully will get some more answers. Have you had a colonoscopy? It certainly put my mind at ease. Of course the weight loss is worrying but could be explained by removing things from your diet and eating less, also anxiety can cause weight loss

Big hugs xxx

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Hi thank you for replying 😮

Do you have anyways you cope because I'm fed up haha 😂 I've tried changing my diet it helps but not as much as I would hope 😮 I had a lap and had a mri recently (waiting to see a specialist) and on my notes it said pouch of dougles and may have said rectoviginal I think I will chevk them tonight 😮 I havent had one my family keeps telling me not to worry and I think once my endo is removed if the pain doesnt go I will see the doctor about it prehaps being something else 😮 Have you lost weight? 😮 I think it could be caused by those but I've always put on weight easily its confusing 😂

Hugs xx

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I followed the fodmap diet which eliminates a lot and it did help my bowel symptoms but like yourself not as much as I’d have hoped. I still have flare ups but I have found that taking a supplement called Bromelain has helped, it’s a pineapple enzyme which aids digestion, the hospital recommended it to my friends mum when she was admitted with chronic constipation. I also take magnesium citrate daily which has helped but like before I still have flare ups with bouts of diarrhoea and constipation, some days I never know what’s going to happen when I go to the toilet :( as for my weight if fluctuates but I did lose a lot when I followed the fodmap religiously which I think is natural when you eliminate gluten, dairy, etc.

Have you told the doctors about your bowel problems and concerns, I told my gastrointestinologist and he recommended I have an endoscopy and colonoscopy, they wasn’t pleasant but it’s a relief to know Endo isn’t inside my bowel. If the problems continue maybe you could suggest one as it’s not uncommon for one autoimmune to trigger another, my mum is celiac and has rheumatoid arthritis and had Endo and a friend of mine has adenomyosis and crohns. I think if nothing else it would at least put your mind at rest a bit as let’s be honest this dreadful disease causes enough anxiety as it is

Xxx

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Ah I've not totally followed the fodmap diet I still have chocolate everyday which I question whether I should but on days lik today where I get pain for no reason I think why bother 😂 I will look into them both hopefully they will help with my constipation 😮 Since I was like 16 my weights slowly gone down but I always could put weight on then when I feel ill 1 year ago at the start I lost over a stone in a few months( doctor thought I was bulimic which is ironic because I have a massive phobia of being sick) now I'm almost a size 8 (if it wasnt for my natural big hips) I used to be a size 12 😮 I told my doctor at the start thats when he tested me for celiac and took a stool test he then told me I have ibs and anxiety I cried because I thought I had brought it on myself 🤦🏼‍♀️ I think I will mention it when I get tested for anaemia and really push for answer if after my op my bowel symptoms dont disappear 😮 Hopefully the endo specialist maybe able to help me as well 😮 Xx

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Don’t let them fob you off with IBS they tried to do that to me at first. You know your body better than they do so just be firm with them. We shouldn’t have to suffer without answers xxx

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I will be as long as I dont have that doctor I hate again I imagine he wouldnt listen because he actually said he didnt want to ever see me again 😂 Xx

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What an utter twat he sounds 😂 you’re right though having the right doctor makes a world of difference. My gynecologist isn’t good but my GI is amazing. I hope everything goes well for your op xx

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He is the bad thing is my family like him but I just think hes a twat 😂 Hes a rubbish doctor if I actually had bulimia he thought I would openly admit it 🤦🏼‍♀️ My 2nd gyne was good she was straight to the point and she sent me straight for an op 😮 Whats a gi? 😮 Thank you xx

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GI is a gastroenterologist, your GP can refer you to one for any bowel, digestion, etc problems. I like doctors that listen and then take action on it rather than fobbing you off xx

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Oooh I might see if they could refer me or see a nutritionalist I have a doctors appointment on tuesday because I'm still on the specialist waiting list 😮 I just weighed myself I've lost 3kg in 3months thats with christmas pigging as well 🤦🏼‍♀️ Yeah I love doctors that listen it seems to be the female ones that are better at listening 😉 Xx

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Update: my doctor is testing me for celiac and h ployri even though a year ago they both came back negative (also I didnt eat gluten before I took my blood test) 😮 Also my liver came back as high functioning as if I've had lots of alcohol even though I dont drink 🤦🏼‍♀️

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Following hugs to you both sounds like my story when reading this post, feeling awful today so logged on. Have you had your MRI results Hun xxxx

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I'm sorry you have to go through this 😭 Have you lost weight and keep loosing it? 😮 I'm concerned because I'm eating what I should but still loosing it 😭 No not yet I had my mri over a month ago and still waiting to be referred 😭Xxx

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Thanks Abi, sorry to hear you going threw the same, yeah though I have cut back on the painkillers so I think I'm slowly putting little bit back on as had no appetite what so ever though was in hosp 8 days end of Aug/ start of sept and my small bowel was enlarged and I was full of poo eventually they managed on day 6/7 to start the poo to come out was meant to be an emergency MRI to test for crohns though only got it Thursday past, did you have to drink klean prep for your MRI? I saw my consultant Thursday late afternoon though report wasn't done as it was meant to be so he said if I don't here tom I've to call Tuesday for results so I'd maybe phone your doc tom as they should have your MRI report by now. Thanks for taking time to rely appreciate it been feeling low awful today xxxxx

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Oh my god that sounds awful 😭 I hope you are okay now? And you can always message me on here 😮 Is it crohns? 😮 I think my mri was just for endo 😮 Going to the doctors tomorrow anyway so going to chase it up 😮 I do get worried because I get constipated a lot I dont want to go through that awful journey you had to 😢 I'm also worried because sounds like you are managing to steady your weight but I cant with mine I even pigged out at christmas and I lost 6lbs over 3months (I was at home for 2 of those months and my mum feeds me lots) dont get me wrong I didnt eat as much as I used to but not so little or so healthy to lose 6lbs 😢 Xxx

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Not having a good day with cramps there horrendous and back and for to toilet, thanks appreciate it same here if you need to talk just let me know, it's taken 2.5 years for my weight to stop failing off Hun, hope your doctor is able to give you some results I called today like being told to be consultant only for Sec to say they not in and can take 7-10 days well consultant said different on Thursday so she was away to email him still waiting for response to see what results are xxxxxx

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Oh no 😭 I bet hot water bottle and tablets are you friends 😮 Hopefully you get some results so you know what to do 😮 2.5 years so long I cant loose anymore weight I'm underweight 😭Xxx

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Update: my doctor is testing me for celiac and h ployri even though a year ago they both came back negative (also I didnt eat gluten before I took my blood test) 😮 Also my liver came back as high functioning as if I've had lots of alcohol even though I dont drink 🤦🏼‍♀️

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Make sure you ARE eating gluten 2 weeks prior to being tested or it won’t show up in the test and you’ll never get an accurate answer and blood tests aren’t always reliable for celiac testing. An endoscopy gives the most definitive answer xx

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I know that now the doctor didnt warn me so I'm too late 😂 I told her I've cut out gluten 😂 I would imagine if I had celiac it would of appeared when I originally had the test 😮 Xxx

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Sadly it doesn’t always show up in blood tests, my gp and gastroenterologist both told me that, which is why I ended up having an endoscopy at their request, my mum went down the same path too and was confirmed celiac after the endoscopy xx

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If my tests come back negative I hope I can be tested for that and crohns 😮Xx

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With an endoscopy they can see the villi in your stomach and if they’re flattened or not. I really think you should ask your doctor to refer you to a gastroenterologist, given the problems you’re having it’s their specialist field. Hope they get to the bottom of it for you xx

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Ooh thats interesting 🤔If this doctor does nothing about it I will asked to be referred 🤔 Thank you 💞 Xxx

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