I'm hoping to get some advice and other people experiences with Stomach symptoms.
Since I was diagnosed 3 years ago i have been experiencing lots of problems with my stomach/digestive system that have included daily dioreah, craps, bloating, nausea and last year was in hospital with bleeding.
was wondering if anybody else has had these problems and what they have done or is there any medication that they find useful. This is impacting seriously on my day to day life, I have to toilet map whereever I go, can't get the train without major planning and my confidence is really suffering.
I have been to a few Gastro's and nothing have been conclusive or they haven't found anything and they are telling me nothing can be done apart from the copiouse amounts of Imodium that I take on a daily basis and not eating gluten and diary. The last Gastro even said that it was in my head and so was my Behcets and now i am doubting everything!
I am at my whits end and feeling really alone with this i just don't know where to go from here. Any information would be so greatfully received!
...I just recently had a gastroscopy as I was having a lot of problems similar to you.
They found out I had an infection of helicobactor pylori - with ulcers. I have had an exstensive course of antibiotics and penacillin along with omeprazole....I now have no bloating and the degistion system in general is so much better.....to think I suffered with this for years before it was looked in to.
Did you gastro consultant do any investigations ? although it sounds as if you need someone else looking into it, if the gastro doesn't even take your behcets seriously. Particularly with you having previously been admitted with bleeding.
Perhaps you need to go back to your G.P with the info that Behcets UK has suggested and ask to be seen by someone else and attach the fact sheet to the referral.
Have you tried peppermint tablets or capsules/pearles as they are particularly good for spasm in the intestines and bowel.
It helped some of my symptoms in particular the diorrhea and nausea
When I read this it was as if I had written it or someone had written it about me. I am disappointed to read about the dismissive attitude of some medical professionals but sadly I am not surprised. I had a similar experience 25 years ago and I didn't know it was BD back then.
Obviously I am not a doctor so I cannot give you medical advice or recommend medications. However, I found huge improvements by changing my diet slightly and including supplements. Please please ensure your doctor is happy for you to take the supplements as I don't want to recommend something that makes you worse; unlikely as this is natural but better to check.
The toilet map you mentioned brought back so many bad memories and I totally understand how you feel. I hope the following helps you.
I had a few cameras inserted to check my problem and like you they said keep taking the imodium while offering no further help so I decided to try and help myself.
I went to the local health store and the advice of a nutritionist I bought some Aloe Vera juice and some probiotics. The latter were from Solgar initially but then I switched to New Chapter newchapter.com/probiotics/p... as they worked better for me. The juice isn't great in terms of taste but it really helped me. If you don't like the taste then mix it with some Apple Juice to improve it.
I also stopped drinking milk as I used to drink a pint a day! I now only have milk in tea about twice per day. I still eat cheese on the odd occasions and it doesn't cause me any trouble. Try to cut out foods that have a lot of fat, like pies and pasties if you eat them. I also tried to remove a lot of salt from my diet and found this helped. I tried gluten free but it was a nightmare trying to find gluten free foods and I couldn't afford them. I did it for about 2 months but it offered no benefit to me - perhaps you will be different.
I stopped almost all alcohol, I wasn't a drinker anyway so this was easy and I just had the odd drink with a meal.
Finally, stop eating about 18:00-19:00 and try not to eat late at night. The nutritionist told me my insides would thank me for a rest to allow them to recover overnight and right or wrong it really helped me. I appreciate sometimes you will eat late, I still do, but make it the exception rather than the norm.
Once I followed the routine I never looked back. Yes, I had the occasional problem but nowhere near as bad as it used to be and having the occasional episode was better than staying at home or taking a toilet map with me.
I definately identify with what you have said...in particular the high fat content foods and eating beyond 6pm.
In fact I have my main meal at midday...which I know might be a problem for some people at work...but it really does help the food to have time to digest.
About 15 years ago I had a really good doctor who was treating me for Chronic Fatigue Syndrome and he found out that I could not digest animal fats, based on an examination of my Poo [sorry for the description]. He was a NHS doctor and all those years ago, other doctors I saw thought he was a bit of a quack.
But, I have found that when I eat things that are high in fat i.e pastries, fried foods etc, I definately have a big problem digesting them and it plays havoc with my stomach symptoms, including pain in muscles and joints.
It is much better when my system has the time [as you say] to rest and recover.
Hopefully it will work for Moys
Thanks DD your posting is really helpful and it has reminded me.
Please oh please do not take any notice of the medic who said that Behcets was 'in you head'. I have found that a diet low in lactose and gluten has been kinder to my 'innards'. As the disease is so irrational that may not be the way for you, but it might be worth giving it a try. Good luck!
I was dreaming that i was back in the year 2000 when i had big problems with my bowel and they thought i had crohns but they have still not ruled it out, I still go to see my gastro consultant every 12months just to keep a check on me or if i have a flare i can ring and go see him.
Moys don't give up if your not happen with your consultant go to your GP and ask to see someone diffrent took my three goes before i found the right one.
I remember being told by my consultant that i bet you thought you was going mad and i said yes and he said don't let anyone pass you off with that.
I'm not sure but ask one of the BD team if they can help with a consultants name in your area
Once again I'm off to the doctor - about to start on Methotrexate today. Seems we live in the same country (albeit on opposite sides) do you want to leave a private message with your email (or phone number) and we can have a chat.
Lesley
Hi Guy's
Thanks so much for all your responses and support, it is always so reasuring to come onto here and know that your not actually crazy.
I have now recovered from my trip to the doctors and put everything back into perspective. It takes alot to upset me and have made a pact with myself to be as positive as I can about this whole experience and i'm not going to let one narrow minded doctor dent me!
In regards to my stomach I cannot eat dairy as i found early on this was a major trigger. I also don't eat gluten as this seems to upset the balance too so no pastries for me (booo). I have however recently come off my pill and this seems to have helped a little but not sure if its that or the copious amounts of imodium.
I have tried fish oil in the past and my doctor has told me to take Aloe Vera juice so i will start on that thanks you DD and also Vit D and i'm on Vit B injections too. Unfortunately being at work 45 hours a week leaves meal times a bit all over the place and hard to fit in but I will also try out the meal in the day however this usually has disasterous consequenses for the afternoon haha!
Red meat seems to make me more bloated so maybe its the animal fat like you said Andrea. Lesley I will email.
Thanks again for your ongoing support it has really helped.
OMG i'm so glad i have found this site and just read this, i'm 24 and the problems I have had with my stomach have ruined my life really, I am petrified of going on coach/bus journeys, I am a performer and going on stage for a performance fills me with terror, and the nerves and worry don't help your stomach either!! I have thought I was going mad as I had gastro cameras etc and nothing was found. They also thought I had Crohns, but it was ruled out. I also get incredibly often after meals, like my stomach is swollen, which is extremely painful and embarrassing!!
I have improved now, and yes a healthy diet really helps me, eating properly, at the right times and taking vitamins and trying not to worry/stress. I find whenever I get depressed or stressed over things to do with BD, everything just gets worse!!
But I feel what you're going through and though I wouldn't wish this on anyone, it's nice to know I'm not the only one! xx
Hi Trines
I know I wouldn't wish this on my worst enemy but thank god someone understands haha!!! I don't get buses or trains either... I car it to work... would LOVE to get on public transport would stop me almost falling almost falling asleep at the wheel at 6 in the morning!
When it's bad I don't find anything works and it doesn't depend on whether i've eaten or not like IBS it just happens!
i'm bloated all the time like you say, I never wear tight tops because of this.
I try to keep fit and healthy (finding it difficult with fatigue at the moment) and always try to have a positive outlook on life you sound like you do the same... I find joking around about it helps....
How long have you been diagnosed for... is your stomach your worst symptom?
Hi, Moys, Well reading your post was like you were reading my mind and writing it down I've experienced these exact same symptoms for a few years now, but it's gotten worse just over the last year, where like you said just going on a bus journey can be difficult! I get really bad stomach cramps, bloating and flatulence, which isn't this best if your on a date to the cinema or something! I feel it plays a big part on your social life and you have to work round when you eat and when you go out to do things. I agree with the gym thing, in which i would love to go more, but the fatigue plays a big part in not having the motivation to go through with it, which is frustrating, as a couple of years back i was into the gym quite seriously and got myself very fit and buff, but I'm not to the gym as much as i would like to be now!! I've spoke to my G.P. about it and I'm just waiting for an appointment to come through from the Gastro consultant, but reading this will help me go with information regarding what others have experienced and how long it took some of you's to be properly diagnosed!
Sorry to hear your going through the same thing, I wouldn't wish it on my worst enemy!!!
I get exactly the same, stomcah cramps and then all hell breaks loose :P... the stomach cramps have been so bad at points that I've almost passed out! Not a good look haha!
I agree totally, it plays a massive part with your social life, toilet mapping and over dosing on Imodium before you even step out the door and sometimes having to cancel plans becasue you just can't get out. I've practically given up dating as it's just too stressful and then you have to tell them that you have this stupid disease and they run a mile. I used to be up front with my dates about it which didn't work well, so then I just kept it to myself which was even worse... got accused of cheating and all sorts!!
I totally get the fatigue thing and the gym.. i've tried so hard this week but almost falling asleep whilst driving home from work and having the stomach from hell i've not been able to get there.
I really wish you luck with you're gastro appointment and hope that you get a more compasionate dr than I did :)... Until then i'm glad that you find this post helpful! Let us know how you get on.
Hi Moys, yeah your right i wouldn't wish it on my worse enemy either, it is such a big nuisance, you feel very bloated at times and don't feel very good about your self and are always worrying about how you look and that you don't look fat!! I also agree with the dating thing, I'm a single guy and I've found the dating thing difficult with having Behcets, and having flare ups and not wanting to say to much to your date about it so you just say your ill, but then they don't believe you and start questioning you! And like you say your not sure if you should tell them so early on in the relationship, but then when you do tell them they run a mile!! So it is hard to work things round your social life, but hopefully once I'm seen by the Doc's I get properly diagnosed and get the right medication that helps and get less problems with my stomach!! I'll let you know how I get on.
Hi Andrea, yeah i think i will visit my local Holland & Barrett store and see about trying some natural remedies, I'm up for trying anything that would help!!
Marmot, I was diagnosed with Behcet's 12+ yrs ago with symptoms before then. I developed uveitis and had prednisone for 3 years; then my bones became crackers; but I have been maintained on Imuran and Plaquenil since and have not had any flares. A year ago I started with what ER CT scans showed diverticulitis; fetal position pain and was diagnosed three times in ER and finally I did see a GI. He did a colonoscopy and discovered a stricture. So i then had surgery with resection of part of my sigmoid and thinking it was caused by the diverticulum. Two months ago I started with diarrhea, bleeding, mishaps, and then turned to constipation and blood and always anemia. I had another colonoscopy and upper GI and was told I had colitis throughout my entire colon. They took multiple biopsies and pathology report came back saying consistent with Crohn's disease. They tell me that Crohn's and Behcet's have the same symptoms with eyes, joints, arthritis, mouth and genital ulcers, and stomach problems. Crohn's starts in the right lower quadrant most often. They want to start me on Remicade. They want to say now that maybe my Behcet's was Crohn's all along. But I question maybe my stomach pain is Behcet's. I really don't know what to be labeled and question do I need something so potent as Remicade. So confused.
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you sound like you do the same... I find joking around about it helps.... 
Stomach pains
ENT problems 
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