Suspected Chrons, tips would be amazing!

Hi there! I read your post and felt compelled to respond as i know exactly what you are going through and it certainly is NOT easy. Its also pretty scary reading some of the horror posts on here and sometimes that can add to the pain and stress of it all too so watch out for that. I just set up an account and this is my first post so heres my story. I had every test under the sun done...upper endoscopy,colonoscopy (both twice),ct scan,mri, i had all these different tests over a two year period whilst suffering with symptoms similar to yours.My crp and esr were raised too in my bloods. I finally got a diagnosis of crohns disease when i had a capsule endoscopy test which involves swallowing a pill which takes pictures all the way down intestinal tract and sees places that the other testing procedures might miss. This capsule endoscopy validated 2 years of hell for me and my suggestion to you is to request this test and don't take no for an answer yeah? Before i had this done my gi was probably looking at me like i was a psychiatric case despite a few things showing up that should cause concern. Got any more questions, ask away my friend. Hang in there, its not easy but never lose hope because its easy to get depressed about all this crap (pardon the pun).

stchristopher, thank you so much for your reply! It really helps to know that there's someone else out there who feels like the doctors think they're crazy
I had the CT Scan yesterday so I'm waiting on results on that, they injected me with the iodiene dye so hopefully that helps any inflammation show up. If this shows nothing my GI said that I should try going to see a dietician - but I'm not sure how that will help considering I have been eating nearly nothing it's all super frustrating.
I think i'm going to request the Pill Cam endoscopy if the CT comes back for nothing, I just don't understand how pain this severe, and with blood and constant D could possibly be just an irritable bowel, or something else similar to that :(

also thank you for your help pb4, it's good to know that everyone's experience with these issues is really different and individual. Thanks heaps for replying :)

You're welcome to both of you M_Aurora and stchristopher!

M_Aurora, my GI suggested I see a dietitian as well due to my IBS still being out of control (my CD is in remission finally thanks to Humira) it's been somewhat helpful, I'm at least not near as constipated as I had become especially since just over a year ago when I developed my recto-vaginal fistula (that's what really prompted my GI to get me on biologics) so dietitian has been helpful with the constipation issues some (still not perfect but better for sure) and I used to think the less I ate, the less I would "go" didn't work but I continued that way for years, my fingernails were in terrible condition, I was a lot more tired and cranky, I wasn't getting enough nutrients (protein, fibre--even though I was taking fibre pills--and so on) she said I was borderline with an eating disorder based on how little I was eating per day, she was correct, she's gotten me on a good eating path that I will be able to maintain and she's setting me up for a type of anti-inflammatory diet for when my CD comes back again, she has Crohn's herself and is one of my GI's patients, so that makes me trust her even more (which is why it's a good idea to get someone that specializes with bowel disease/issues which she does)I'm still doing my reintroduction phase, this is actually my last week of reintroduction, she put me on a low FODMAP no fructose diet since April 6 and I started the reintroduction going on 4 weeks now (don't have to reintro the dairy cuz we already know I'm lactose intolerant but I use lactaid products for that--GI tested me for lactose and it came back as severe but the lactaid seems to work for me) so I highly recommend a dietitian because I spent years trying to figure diet out myself with no success...although I will add, as soon as dietitian looked at my 7 day food journal I kept for her for our second visit while on the low FODMAP no fructose diet she had me on (for 3 weeks so far at the point I saw her again) she said that I should have improved greatly on the diet and that my IBS clearly is stress driven, a double edged sword since I was hoping I wouldn't have to give up any of the FODMAP that are in the foods I generally eat but at the same time if it was diet then I'd simply just avoid bothersome foods, stress is harder to get under control...it sucks!


stchrisopher, as I mentioned above to M_Aurora, I tried all kinds of diet changes, I also took many types of supplements that did offer some help but not nearly enough to get me on the right track (bee propolis which actually cut daily bowel movements I was having at 30 times a day down to 15/day) crazy eh, to get excited about only going 15 times a day---IBD/gut issues can really torment a person physically, emotionally and mentally....besides the bee propolis I took omega 3-6-9, vitamins A, C, D and B12 (which most CDers tend to need B12 due to not being able to absorb it via food properly) and probiotics, all these things did help some and I was grateful for any little help I could get but it just wasn't enough likely because I was either allergic or non-responsive to the oral meds used to treat IBD.

There's just so much to tell and I'm trying to share key points because it is overwhelming and I'm trying to share 24 years straight of no remission until last year (so technically 23 yrs straight of flaring, keeping in mind that I'm still dealing/suffering with the irritable bowel syndrome issues)...my crohn's actually started when I was a teen in a strange way, with what's called perianal crohn's skin tags after I started smoking first then a couple yrs later went on birth control pills (2 known triggers for crohn's disease) I would get these weird bumps on my anus (the outside) and keeping in mind I was a teenager, but every GP I saw just kept telling me they were hemorrhoids, but that didn't make sense cuz I was never constipated, I always had once nice normal controllable bowel movement like clock work everyday and these bumps would appear and then disappear all on their own (that's what perianal crohn's skin tags do---google pics of them compared to hemorrhoids and you'll see there's a big difference between what the two look like)

Fast forward a bit, it wasn't until about a year and a half after having my first baby that those skin tags roared out of control and I started having more urgency and frequency but still formed bowel movements but I knew something wasn't right....I'll have to reply back tomorrow cuz it's getting late and I hate writing long posts/replies lol.

Just an update, got the CT Scan results back and it seemed 'completely normal' according to the report, so my GI says it is IBS.
Feeling incredibly fed up and confused because I feel like the severity of my symptoms point to something else. Oh well :(

stchristopher, yes, thanks it's been crazy what being sick like this has done to me....I don't feel very strong lol. I knew I had the recto-vaginal fistula because I was passing gas through the vagina and it scared me to death because I knew that most women will also pass stool through there as well, luckily it didn't get to that point for me but knowing now that the inflammation of the fistula is cleared up I'm happy about that but also sad to know that the tract will forever remain and can become inflamed again at any point and that scares me.

As far as diet goes, I really don't know still at this point what works and what doesn't, my Crohn's disease is in remission thanks to Humira (that's what cleared all the inflammation up including for the fistula) but with the IBS mine seems to be more stress than diet driven...I'm on my last week of reintroduction phase with the diet the dietitian put me on so I'm happy that so far with all the reintroduction's of FODMAP have been going well and it doesn't seem that I'll have to give up/cut down on anything specific it's still a matter of me having to get my emotions under control to aid with my stress. I've always been kind of sensitive emotionally (had a scary upbringing and life basically with very hurtful people that you're suppose to be able to trust not to hurt you) so dealing with the emotional stress of that and the physical and emotional stress of being sick makes things really hard...but I suppose if I want to get my stomach under control then all I can do is take one day at a time.

I highly recommend bee propolis (google it, there's a lot of great info on it) and as long as you're not allergic to bees/bee products then there shouldn't be any issue (with the exception for pregnant/breast-feeding women) but even my GI was on board with it years ago when I mentioned it to him and what help it did bring, he said continue with it since you're not able (at that point years ago) to handle any RX and that it's a non-toxic nutritional supplement and won't cause any harm to me. I also highly recommend increasing fibre (either food or supplements, pills are best supplement wise as they contain less garbage fillers in them than the powdered fibre supplements) I still take fibre supplements, and also probiotics, I highly recommend those as well.

It's important to start only one new thing at a time though to see what if any help it is and then once you know what help (or not) then decide if you want to add or try something new otherwise you won't be able to distinguish what is helping and what isn't since if something isn't helping then no point wasting time and money on it.

I've also tried many things that did nothing to help or caused even more grief, cats claw, gave me bad indigestion, colostrum didn't do anything, chlorophyll only turned my stools green, licorice root and green tea gave me terrible indigestion. It's all trial and error, and remember, what works for some doesn't work for all. It can be costly trying many natural products as well so start with the basics like fiber supplements to help bulk up stool (for diarrhea) and to aid with passing stools (for constipation, fiber really is a great friend you just have to go slow and up your water and expect some discomfort like excess bloating and gas, it's normal and happens to healthy people too but once your system adjusts to it it can be very helpful but you must keep with it daily and only increase after the initial start of it and after your system has adjusted to it--no more excess bloating and gas).


M_Aurora, did you ask for the pill cam after you got the results of your scan? If your doc is simply set on the fact that you only have IBS and not IBD but you don't feel confident in that DX then it's important that you find a doc that will scope you (or pill cam you) because Crohn's can be tricky apparently to DX (mine was an easy DX just with the anal skin tags and the sigmoidoscopy I had done which showed a lot of patchy inflammation that is indicative to Crohn's) so I wish you the best with making sure you get DX properly.

Thank you stchristopher very much for your very kind words. I agree with many of the points you've made, I know we all have struggles and issues that are very similar, it's just part of life and I do understand that and yes, I agree what comes after life will make up for everything and I'm thankful for that, it's probably the only reason I keep on the path of life, because I know that eventually that path will end and then the real true beauty and love will exist and nothing else.

Wishing you the very best as well on your journey :)

I'm with you NCOT!!

oh my god you just reminded me id just lovvvveeeee a nice cup of tea but unfortunately i haven't had a cup in two years as it hurts my gut so much believe you me gumbo i want out too but I'm trying to remain positive instead of killing myself or someone else god forbid. There is only so much the human brain can take. But please don't mock my willingness to lean on a higher power for strength in a weakened lowly state if its mocking you're doing. If its not please ignore my comment and i hope your condition improves or that you are learning to cope better with this ****** of a thing we call crohns. Its certainly not easy and each to their own in their way of dealing with it i guess. I choose to believe that its my cross that i must bear the same way as any other individual who gets thrown a bad card. Maybe its a test of my character, sometimes we say why me when the pain gets so bad you could jump off a cliff, but recently I've been saying instead why not me? I hope your depression and anxiety is good nicecupoftea because if you're like me, that can be just as painful as any crohns.

I'm not mocking you. I only wish in some ways I had your belief in a higher power, because then at least I could hope for a better existence after this one. But I just don't believe in one. It doesn't even feel like a choice; I can't believe rather than refuse to believe. The required faith is lacking. That leaves me placing my faith in humans for creating a better future, and I can't tell you how low my faith in us as a species is.

I couldn't agree more about depression and anxiety being just as painful as Crohn's. In fact for me it's been far worse. I didn't get Crohn's until I was 25 so I at least I had a quarter of a century Crohn's-free. In childhood I had severe chronic constipation, however. That was miserable in its own right; I did some internet research on it a while back and it seems like the type of constipation I had is mostly psychological in origin. My problems started young. And they're still ongoing. Like pb4, I had family which badly let me down - in childhood and adulthood. It all came to a head a few weeks ago and I am no longer in contact with anyone from my family (apart from very irregular correspondence with a brother on Facebook).

So I guess you could say I've got my own cross to bear. Only I can't attribute any rhyme or reason to it beyond genes, environment, and pure bad luck. I'd gladly lose all my memories if it gave me peace. I don't want to fight or struggle, I'm so bored of fighting the demons in my head. The Crohn's seems relatively straightforward by comparison, although I am in remission right now. I've been through the mill with that as well. Hopefully in your case the elemental diet will work (I'd stick to it for 6-8 weeks, though; minimum of 4 weeks).

At the very least, I hope you can get better enough to have a nice cup of tea.

You've got a friend in...youve got a friend in me...when the road looks rough ahead, and you're miles and miles from your nice warm bed, just remember what your old pal said, Boy you've got a friend in me, you've got a friend in me (x3), you've got troubles, well I've got em too, there isn't anything i wouldn't do for you, we stick together and we see it through, yeah you've got a friend in me...yeah you've got a friend in me. Don't ya just love toy story? NCOT, i am so sorry to hear of your early childhood trauma also, that is an incredibly difficult thing to live with and its easy and understandable that one would struggle with their faith after the hurt involved.i hope you have a good support system outside of family as these afflictions, disease s or curse, i really don't know what causes them, but they can be incredibly isolatory and its easy to get cut off from the world and get angry and question everything.Ive been there in my life,hell even the perpetrators of the most heinous crimes in society are in many cases victims themselves.So i think its important and easier said then done that we work hard to bring about a change in our thinking because we become what our thoughts are.So whatever that involves for you and how painful it may be, whatever it involves in releasing those toxins,expelling this demons, those chains of bondage that got a firm tight hold gripping on for dear life of you,i think for your own good you need to put out them flames out once and for all, throw the box of painful memories away NCOT because they gonna haunt you for every minute of the rest of your life if you don't. Put them all into a box, write them down and stamp on them, burn them, cast them off a height and let them **** off somewhere else for a while anyway at least until you come to terms with it all,its darn hard work trying to shift ones thoughts or as MJ once said, to make that change, to look at the man in the mirror and say its time to leave all that hurt, all that pain, all that toxic waste behind. Its too heavy, my backs broke and i can't carry it anymore. remove all environmental toxins also if that means family so be it, if they adding nothing discard them if they not willing to add to your healing by apologising or making things right, the best of good luck to them and Goodbye. Hell, move to the other coast and change your name and whole identity if that what it takes because living with the weight of the world on your shoulders just aint worth it, you guys know that as well as i do. Its absolute hell, to lie in bed and seriously not want to get out, not wanting to live or die, sometimes wanting to die, seriously wanting to die aint no fun for anyone who has been there.Crying with pain, physically and mentally at the same time isn't what this was supposed to be about or what was planned for that little child on their first day of school.i would love to be there to help you, make you a nice cup of tea and map this all out but thats unrealistic right now but my only advice is to keep searching, never give up hope because as they said in shawshank redemption "hope is a good thing, it may be the best of things, and no good thing ever dies. Even andy dufresne crawled out a river of crap and came out clean on the other side. So if he can do it, we can too. WE CAN TOO! AND WE WILL! **** crohns! **** life and all the crap it throws hoping to stick! i would love to get a lend of a cheerleader outfit right now and shout it but its much too early for that here where I'm at and I'm in physical pain. God bless you both! And pb4 i hope you're right, that there is a better world than this in time to come. I hope!

Sorry if I offended anyone...didn't mean to.

Gumby you never offended me at all...i maybe jumped the gun my apologies for that.This crohns plays with your emotions sometimes you know how it is.I thought you guys were mocking my faith but i now realise i was completely wrong.i hope you are having a great day gumby. Best wishes and kind thoughts right at ya.

NCOT, that sounds like a right trailer load of crap and i know exactly how you feel trust me.i have some crazy assed family dynamics going on too but luckily not all of them are the same.When family aren't understanding its very tough man it makes this thing so much worse.you become angry but i try to reflect that anger now into getting well.so much easier that way after years of the other way.theres nothing worse than the unmedicated madman either who has no insight so that must have been very tough.The only consolation is sometimes to feel pity for these guys because in the very high majority of cases they are broken human beings themselves as a result of their own childhoods, trauma and upbringing. theres something missing when you are so cold like that. its a very small consolation when it has affected your whole life in a negative way. You sound like you need an overhaul, get out, join exercise class or take up a hobby where you can start meeting folks again because sitting at home all the time you never gonna find nothing only trouble unless you are a hermit. I know from my own experience that is easier said then done but its essential to healing to have the social side of your life dialled in too as we are human beings after all designed to communicate and procreate in most cases. i still struggle with this myself mind you so i need to take my own advice on that.You have a lot to offer i can tell from your words that you are a warm kind hearted spirit so you deserve more than just a nice cup of tea. Its so hard though when this bloody illness takes hold, its so bloody difficult. You are on the right track though because you have insight and understanding of everything and that is very important first step believe it or not. Why can you not get a dog?finances? Surely there must be some way to get a wee dog? Is there many support systems in your community? Have you ever tried cognitive behavioural therapy? Thats a great therapy for working stuff out if you get the right therapist it can help you take the next step, the hardest step of all- ACTION. I know exactly how you feel believe me. In this world, the harsh reality i came to eventually was that the only person can help you is yourself because its hard to depend on anyone, most tend to let you down. thats why i think its important to have a spiritual belief in something greater than this world, not even necessarily God if that helps you but just something that is waiting to catch us when we can take no more, and something that knows what we are going through even though we can't hear, feel or see it.its all a mystery,its all questions with few answers but surely the human body with all its intricate details was designed by somebody? So Ncot, i hold great hope for you because you know what you want, so go get it gurrllll!! Things will get better, every cloud has a sliver lining, and when you have a family it will be filled with love and warmth and goodness, it will break the link and stop the cycle and erase the mistakes/hurt of the past. You have been blessed with these insights, don't let them go to waste please. Take care, you are in my thoughts and prayers.