Really need to vent... :(

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hannah-rose

hannah-rose

Joined
Apr 22, 2011
Messages
525
I'm so frustrated, i think this is the last straw I really do, at some point I really am going to say a big **** you to the doctors and just stop seeing them and just get sick and then maybe they'll start to give a crap.

I've just come back from a consultation with ANOTHER consultant, this time a dermatologist. I'm supposed to see her because obviously my problem (see below) is external. First she asked me to explain why I was there - I hate giving my medical history because now it's so bloody long and complicated and no one knows what the hell's wrong with me so how can I even explain it? Then she examined me and obviously I love getting my ******** out to random strangers so that was a barrel of laughs. Then she starts going on about different things like crohn's and also psoriasis and talking about creams and dressings and at that point I had the urge to punch her because doesnt she THINK that maybe i HAVE been using different dressings etc for EIGHT MONTHS??? And NOTHING is happening???? I seriously could've cried when she started back on the wound dressing front.

Anyway she'd been very vague so I said well, are you telling me it's crohn's or what? And she said she thinks it is perianal crohn's now, but it could have started with psoriasis which caused fissures. Ok so there's psoriasis in my family but I've NEVER had it, and I've never experienced dryness or anything 'down there'. It's just another theory with nothing to back it up. What pissed me off the most was that she KEPT going on about oral steroids. I was like, no way in hell am I taking oral steroids for this. For a start, my GI Doctor expressly said that steroids were not that effective in dealing with perianal crohn's and that infliximab was the most appropriate drug. I told her this and she just sort've looked at me and I said well you'll have to take it up with him.

She's given me a topical steroid to use twice a day on the ulcer edges and told me to come back in two weeks. Then she started talking about being patient. I nearly punched her again. I've been patient for 8 months whilst medical professionals danced around me scratching their heads prescribing this and that watching nothing happen.

I'm about to email my GI with the details of the consultation but I swear to god If 5 doctors have now told me I have perianal crohn's and I don't get infliximab asap I'm get get really, really mad.

Now I'm going to cry :(
 
Ok so I'm still feeling really terrible and I think I keep thinking about what I would've loved to say to that doctor when she talked about being 'patient' (I think this might help me feel better):

"Patient? PATIENT??! Do you have any IDEA what it's been like for me?? Do you know what I've been through for the past EIGHT MONTHS?!? Do you know how it feels to have seen SEVEN medical professionals and millions of nurses and STILL nobody knows for sure what's wrong and regardless of that, nobody has been able to fix it?? Did you go on a family holiday to the lake district and try to climb a mountain with a huge infected ulcer on your ********, barely being able to walk with pain?? Do you know how it feels to gasp and cry with pain when you take a dump and see blood EVERY time you go to the toilet?? Do you know how it feels to reach down and touch your body and where there should be normal, healthy skin just feel a giant, bleeding hole?? Do you know how it feels to wake up from what should have been a simple operation, and realise you have to be subjected to weeks of agonising wound packing, being treated like an invalid, to not be able to sit down or walk without pain and to dread toilet visits?? Have YOU ever had a freakin' colonoscopy??!? Do you know how it feels to know that until this problem is healed you know you'll not be able to have sex because regardless of the complete humiliation that would occur from having to show/explain this to a potential boyfriend, the act itself would probably result in pain and the anxiety felt because of it would probably make sex impossible anyway?? Do you know how it feels to have a dream and not be able to achieve it because you have a problem no one knows how to fix?? Do YOU know how it feels to feel like a total FREAK???

Yeah well don't talk to me about being patient, you have NO idea what patient means."


Oh that felt so good.
 
Hannah, I'm so sorry you had to deal with that. I have to say that I started getting more attention when I freaked out like you mention above, during a doctors appointment. I'm sure this would make some doctors angry, but they shouldn't be doctors then. People go to them because they are sick!
 
Thanks Carrie, it wasn't even the Dr that pissed me off either, it's seeing someone new every other week and having some other theory or suggestion about what's wrong. I was finally getting my hopes up that I'd be getting Infliximab/Remicade and that it might heal me, and now she's all like, 'mmmm oral steroids, yummy!'

My hand really hurts now. Crohn's or just generic random pains? Who knows!

I'm sure everything will look better in the morning :(
 
Thanks guys, I knew posting here would make me feel better.

I know she's just doing her best and she apparently has a clinic on Harley Street (very very expensive and famous area for private healthcare in London) but when she said I had psoriasis of the ******* i was like..... wtf?? How can that even be true? I know my body and I know you're wrong! But anyway...

Looks like the only hope for me now is Remicade/Inflix so I just want it asap so I can get on with pursuing my dreams (teaching english abroad). Might not happen but I hope it does.
 
hey hannah!
i can't believe she told you to be patient!! that's so not cool! i think i would have just stared at her thinking 'seriously??!' or something.
i think sometimes when a dr sees someone for the first time they try to like start over and need 'proof' or whatever for themselves that first line treatments didn't and won't work. which is kinda silly.
on the plus side, i'm pretty sure i read somewhere that remicade is used to treat psoriasis too. so her wacky theories shouldn't stop you from getting the remicade treatment. remicade seems like such a multitasking drug haha!

how have the rest of your consultations gone? good i hope!!! :)

kate
 
Hey Hannah,

I feel for you. Perianal issues are a bitch to deal with. They're embarassing, frustrating, life-changing, and doctors never seem to care that much. I've been seeing a colorec surgeon for a few months about my perianal issues, and she's always talking about "being patient"... I can't even sit down to be patient. I have to stand up.

So yeah. I get where you're coming from. It's terrible, and sometimes doctors can be so useless. I think you have to experience these kinds of problems to empathize the way you should.

Praying for you. *hugs*
 
Hi Hannah, So very sorry about all that you are experiencing. My biggest complaint is the same also with having to explain over and over and over again what is happening, and I see the same Dr each time! :LOL Sometimes I go in and she asks how it is going and I get this blank look on my face. I don't know? Not good? Same as same? :LOL But no, I have to rehash it all over each time and it is really hard when she stops me and says well according to my notes on this date this is how it was yet you say.... Well WHY ASK? :ywow: Hee hee!
 
Holy Hannah! I'm sorry you've been dealing with this for so long. I can sympathize. I thought that getting a diagnosis would result in getting better. WRONG. It's been almost 6 months of this flare.
I also get perianal ulcers. They started back in October, and I was tested for genital herpes. The blood tests came back positive, although they can't differentiate between herpes simplex I (cold sores) or II (genital.) The swabs they took from the actual ulcers came back inconclusive. I hadn't been diagnosed with crohns yet, so this was pretty much the only explanation. Now, I don't have herpes. I do get ulcers, randomly, and usually only one at a time. I've never had more than two at a time. They don't act like herpes, they don't look like herpes, and they don't respond to herpes treatment. I have one right now, right beside my anus. I've been super constipated, and straining for about 10 minutes at a time, then wiping. I think that's what caused it. But they won't treat it. They won't treat my abdominal pain. They won't treat my joint pain. They only want to treat my inflammation. Apparently, if the inflammation goes away, everything else will magically disappear too. But I've been on prednisone for over a month, and I'm still in pain, still having diarrhea when I'm not constipated, still getting ulcers... And no one seems to care.
I'm very sorry that you're having SUCH a hard time getting a diagnosis, and treatment. Keep trying. I gave up a couple years ago, and just let myself get sicker and sicker, until I ended up in the hospital, had to be admitted, and now my intestines are so screwed up, they can barely get a scope through them. Don't stop trying. If anything, try harder! Don't be afraid to scream and yell and demand the treatment you deserve. These doctors work for you. Not the other way around. Make them listen. Make them care.
 
I'll reply properly tonight because I have to go to work in a minute but can I just say you are all wonderful people :) I woke up still feeling horrible this morning, then I read all the supportive posts on this thread and I feel so much better now :) :) Thank you for making me feel happy today!
 
Hannah ~ Sometimes we have to let it all out...on the doctors!

When they sent me to the ER thinking I had appendicitis and I was told it wasn't (I already knew it wasn't) and the doctor suggested it was my uterus I SNAPPED!

I cried, yelled and pouted like a baby! It got her attention quick and through this temper tantrum she suggested Crohn's (which I already suspected). This also got me a quicker GI Referral. Instead of waiting until December I got an appointment within a month of going to the ER.

Because Crohn's and the symptoms are typically on the inside it's hard for others to see you are in pain. Letting a doctor see the emotional side of this disease can be somewhat beneficial. It humanizes the situation.

Good luck & I hope you are feeling better soon!! :ghug:
 
Hannah...if it had been me, I'd have started trashing the office! I can't believe after all you've gone through, someone would have the nerve to tell you to be patient! It's easy to say to someone when you feel fine, but have no idea the pain the other person is experiencing. I really hope you get the Remicade soon. It's criminal the way the doctors are shuffling you around.

Here if you need us!:hang:
 
Hannah,
I am new to this web site, but I'm not new to the whole medical community. I am a Paramedic and have been for almost 23 years and my ex-wife is a paramedic/flight nurse. Back in 2003 I started having all kinds of pain and problems went to my PCP and he done all this work up and basicly told me I had IBS and to take over the counter lomotial, which I did, I lost almost 40pounds and went back to him and was in really bad shape he admitted me and started a GI work-up when the GI doctor walked into my hospital room he right off the bat told my wife (not much we can do he has IBS) She went off and fired him on the spot, he stepped out of the room and came back 10 min. later and said he was sorry and he would scope me and see what he could find. After he scoped me he came back into the room the next day and once again said he was sorry that I had Colloignic Colititis to which he started treating me for, I have had 3 fistulas and multiple other scopes and now I have full blown crohns. Long story short YOU HAVE TO FIGHT AND NOT GIVE UP!!!!!!! There is a thing call the patiants bill of rights look it up and take it with you to your doctors, I have also went as far as getting my insurance company involved and told them I will go to the ER every time I get a twitch of pain and you will be paining all of those bills unless we get some actions from the medical professionals that I'm dealing with. Let me tell you when doctors are threatend about loss of revenue they tend to listen.
I'm truly sorry for your issues and I hope that you get some relief, but fight back please fight back fire some doctors and get new ones till you find one that will listen. Get with your insurance agancy ask them for case amnagment and get their nurses fighting for you, they the insurance companies want you well it's cheaper on them.
 
@Kate I know! I was so holding it together but when she said it was psoriasis it was all I could do not to scream! the rest of my consultations have gone well - I fired my NHS doctor cos he sucked, got a lovely private healthcare consultant GI and everythings been going good since. The thing is he only wanted me to see the dermatologist for that last opinion before he went ahead with Remi/Inflix, all she needed to say was yep, its crohn's, then he would've just treated it!

@Ben I know how you feel, the embarassment is a major factor for me. People think cos I look healthy and act healthy that im fine but my problem is bad, its just hidden, in my butt! If everyone went around all day showing their butt holes to people, maybe people would realise how bad it is! (NB I posted a photo of it on here but photobucket removed it - that's how bad it is!)

@Gidget I totally agree! I'm so SICK of explaining my problem! I'm like 'ok it all started when I was eight years old...' it's ridiculous. Read the effing notes!

@Samantha Ooh you get perianal ulcers too? That's fascinating, I have a friend! What are yours like? Are they big? Mine's a monster. It's really epic. You sound like you're having a terrible time, when will you be getting treatment??? Surely they need to treat you with something? I think you're right, the next time I see someone and they say something like 'be patient' I'm actually just gna lose it (in a controlled and articulate way lol).

@Ellipse22 That's how I feel! It's like, errr I know my body and I know what's wrong with me and what's not! How can it be that us, the patients, are better at diagnosing ourselves than trained medical professionals? It's disgraceful. I've felt for a long time that medical professionals get an idea in their head and just run with it, ignoring the evidence around them.

@SarahAnne can you believe I've gone private and I'm still getting passed around? I'm hoping this is it now and the next step will be Remi, otherwise I'm gna go nuts. I know it's a hardcore drug and expensive etc but seriously, I have a giant bleeding hole in my butt crack. And what are they gna do, just leave it there? Ok so I'm not experiencing the terrible D and pain and weightloss etc but I do still have gigantic open wound that's is not healing, surely that warrants treatment of some sort?

@Eric thank you for your kind words :) I will take your message on board and not give up!! At the end of the day I'm paying for my treatment and I want what I pay for! (Well it's privtae healthcare through work... but still!)

Love you all xx
 
Crohn's can affect a person from the mouth to the anus, according to everything I've read. I'm surprised the doctors forget this so quickly. If it's not in the gut, they tend to dismiss it as IBD.

Good luck!
 
Photos are great! I'm all for photos. Video too! I was watching some videos about double balloon endoscopy because of one of the conversations today. The way intestinal bleeding looks is not even remotely the way I had envisioned it. There was also a part where they used a balloon on a stricture. That was freaky to watch!
 
Who posted a photo? :LOL Hey! I put my PILLCAM up on ebay! It didnt sell but it did make it to Jay Leno!!! :LOL Tee hee!!!
 
Yeah, I have alot of perianal issues, actually. Every GI I've seen says it's totally expected with crohns, so I don't know what's wrong with your doctors' heads. I don't get big ones, or multiple ones, very often. Right now I have one about the size of a dime, right beside the actual hole haha. It makes it quite difficult to wipe, especially since I'm so paranoid about being clean. Mine tend to heal rather quickly, compared to yours anyways. They go away in about a week and a half. Usually I get them right in that middle area, between everything. Since I've had so many, I have alot of scar tissue there, and it probably looks wierd. The last GI who looked at it (last week) said that area had gotten very "thick" and it might cause problems later.
Sometimes I use this cream that I stole from the hospital (lol.) I had one while I was in there, along with a diaper rash type thing, from having so much diarrhea. They gave me a cream used for fecal incontinence. It's basically adult diaper rash cream, but it works really, really well. I also have diltiazam(sp?) gel. It's supposed to be used for fissures, but alot of the time, I'll get a fissure that turns into an ulcer. They're hard to prevent. It's not like I can just stop using my butthole for a week. It never gets any rest!
 
Hi Hannah. I read your vent but I haven't read all of the replies that follow yet so I'm sorry if I duplicate anybody's comments here. You have certainly been extremely patient and you should not have to put up with docs who can't sympathize with that.

For what it's worth, I have a non-healing peri-anal fistula (I actually have to wear a gauze sponge 'tucked' into a sensitive place all day long to catch the run-off) and oral Prednisone really does work quite well in getting it to calm down and stop draining when things get bad.

I don't disagree that Remicade is likely your next and best option but I wouldn't dismiss the steroids out of hand. If nothing else, they might give you some interim relief and they could also have the added bonus of making you less likely to react to your first few infusions of Remicade once you get them.
 
25times said:
It's not like I can just stop using my butthole for a week. It never gets any rest!
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Lol I know what you mean - sometimes I wish I could just stop pooping for like, a week or so, i bet it would really help!! Perianal issues suck and I feel like because I don't present with 'normal' symptoms people are at a loss as to how to treat it *sigh* I hope they figure it out soon.

I wouldn't mind so much about taking oral steroids it's just my GI said he didnt want to use them for now and having conflicting opinions just slows everything down. I want to get on and sort things out, especially as I'm supposedly having private healthcare.

ALSO, I'm literally about to scream at my dermatologist. After she prescribed me the steroid ointment, then emailed me the next morning asking if I'd had a chance to start using it yet (err, no when they have to order it in, obviosuly) I JUST went to the pharmacy to pick it up and they told me THEY DON'T DO THE OINTMENT ANYMORE. Well that is just fantastic. She doesn't even know that the medicine she's prescribing is no longer made. Brilliant. Well done her. Harley Street Practise my arse. I emailed her telling her what had happened and to organise for a different steroid and to have it ordered to the pharmacy so I could go pick it up.

FFS.
 
Hey Hannah, I'm sorry this is all still dragging on for you. That dermatologist sounds like a real C-word. Yep, that's right, a real crankey-Sue ;) (I've been watching too much 30 Rock lol). Hope she pulls her finger out so you can just get on with trying Infliximab, which will hopefully be the solution to all of this. There's nothing more annoying than your situation leaving doctors scratching their heads! It's just like 'well great, wtf do I do now then?'. I know how much you want to get on with your life - hope it happens soon!
 
Hey Ian, thanks for the kind words :) Haha, yeah when I got to the pharmacy and I was huffing and puffing about the prescription I went 'Oh don't worry it's not you (to the pharmacist) it's that bloody stupid doctor!' Seriously she's supposed to have a practise on Harley Street and she doesn't even know when a drug is out of date? Deary me.

It's very difficult not having a diagnosis either way but I'm on the road and my GI is still behind me and emailed today which is great, even though he's apparently on leave. The dermatologist suggested manuka honey dressings so I told my wound care nurse when I saw her today and she said ok we can give it a go - I asked her if I was going to attract wasps! So now my butt probably smells like honey, which is nice ;)
 
This is brilliant. I emailed my Doctor explaining the cock up with the topical steroid and telling her to sort it the hell out and get a replacement sent to my pharmacy. She simply replied 'The ointment is available. Try boots.' Brilliant. Absolutely brilliant. I emailed back saying no the pharmacist said it had been discontinued and that boots had a **** pharmacy and I've had loads of trouble with them in the past, and can she just get it sorted because I really want to get started with the treatment. No reply. Obviously not going hear from her until next week now. That's another week of my life down the drain. She is really going to get it from me next time I see her.
 
Went to two pharmacies today - apparently the prescription hasnt been available for close to 6 months, and they have no idea when it'll be manufactured again. I emailed my Doc to see if she could prescribe me something different and suggested that I don't wait for an indeterminate amount of time to 'see' if they start making it again. Urgh, I just want to go back to seeing my GI, he's so nice.
 
Hey Hannah,

I have spent some time googling researching etc my case and your posts always seem to pop up. Your situation is extremely similar to mine being that my major symptom is a non healing ulcer that was diagnosed as a fissure... I have been dealing with this for about a year now with Crohns being thrown into the mix the last 4 months... I am seeing 3 different specialists ( CRS, GI and rhuemy) who all say well it looks like crohns and I would say it is but can't say for sure if it is as all the tests have been negative grrrrr so I feel your pain 100%!!!! I would like them all to pull there finger out and just start me on the drugs to see if they can help in healing. Mine are talking of starting me on humira but none if them actually want to start me as no firm dx yet:-(.. They just keep sending me away saying see how you go for the next two months and it flares up come back and we will see what we can do WTF they have no idea of the pain and suffering and effect this has on your life!!! I have had three rounds of Botox with little help but have to wait one more month before seeing my CRS again to see where we go from here...
I do hope you get some results soon as I know how hard and painful this is a huge crater in the ass is debilitating and effects every part of your life we really need to push these docs to get anywhere!
 
Kelkel said:
Hey Hannah,

I have spent some time googling researching etc my case and your posts always seem to pop up. Your situation is extremely similar to mine being that my major symptom is a non healing ulcer that was diagnosed as a fissure... I have been dealing with this for about a year now with Crohns being thrown into the mix the last 4 months... I am seeing 3 different specialists ( CRS, GI and rhuemy) who all say well it looks like crohns and I would say it is but can't say for sure if it is as all the tests have been negative grrrrr so I feel your pain 100%!!!! I would like them all to pull there finger out and just start me on the drugs to see if they can help in healing. Mine are talking of starting me on humira but none if them actually want to start me as no firm dx yet:-(.. They just keep sending me away saying see how you go for the next two months and it flares up come back and we will see what we can do WTF they have no idea of the pain and suffering and effect this has on your life!!! I have had three rounds of Botox with little help but have to wait one more month before seeing my CRS again to see where we go from here...
I do hope you get some results soon as I know how hard and painful this is a huge crater in the ass is debilitating and effects every part of your life we really need to push these docs to get anywhere!
Click to expand...


Omg, you're like me! That's so exciting!!

I'm so gobsmacked to find someone who might be in the same position I am, seeing as every doctor says 'I've never seen anything like this before!'

I'm pretty much the same - I had anal fissures all my life from childhood and they used to come and go, well they were always there but sometimes they stopped bleeding for a bit etc. Last Spring I went to the Doctor about them and she referred me to a colorectal surgeon who tried some treatments for fissures but it didn't work very well, then my fissure got infected and turned into a large ulcer. I had it curretaged and biopsied this January and it came back that there were granulomas in the ulcer (apparently a sign of crohn's). the wound healed well at first with packing and dressings but stopped healing after about 6 weeks and has done nothing since. I've had different dressings and antibiotics etc. but nothing helps. That's why I've been tested for Crohn's but like you my results were inconclusive.

When you say you want them to pull their fingers out and start you on drugs to see if it'll heal and lead to a diagnosis I know exactly how you feel - they don't want to rush anything as the symptom is confusing for them but what's the alternative? To stay sick?

I'm really interested to find out more about your problem because I might be able to say to my Doctor's that there is somebody else in the world with my condition! When did your problem start? What caused it? Do you have any other symptoms? How large is the ulcer? Below is a picture I drew of mine lol

Untitled.png


Anyway I hope we can find out a bit more about each other and offer each other some support!

Hannah x
 
It is nice to know that someone else out there also has has the same problem as me albeit horrible as I know how painful it is!

My stuff started last september my ankle and knee swelled up for no reason at the same time I was under alot of stress at work so just ignored it... I went for tests and lupus was thrown around a bit but inconclusive ad the norm!!!
I started getting mouth ulcers which I still suffer from now crazy severe ones that were just out the norm. Anyways I got my ass ulcer after a holiday to Thailand I got so sick from a bug there (everyone I went with was also sick) after I came home I had pain and blood and that was the start of my nightmare. I started seeing ny CRS back in December last year and did the norm rectogesic high fibre diet etc... It did not help I was in so much pain I couldn't get out if bed. I had my first round of botox in Feb and it did lessen the pain but I knew my tear was still there and not healing.. My second round of botox was in April and my CRS also removed my skintags this us when the
ulcer developed and the crohns began to be thrown into the mix... I didnt heal it just became one big hole in the same area as your pic... When I went for a
follow up my CRS said the skin tag excision site and fissure have merged to
become one big hole that's when I was like **** I'm screwed and these docs
can't fix me!
So I suffered extreme pain untill my CRS referred me to a GI he was great and said the same looks like crohns but inconclusive started me on cipro and flagyl for a month which was no help for the pain so I went for a third round of Botox. This has helped but I still have a huge hole and lots of blood when
having a BM. It's so frustrating as u have no other issues with my bowel or
digestive system but untill I get a firm diagnosis I cannot have the surgery
(LIS) which I beleive is my only option to releive the pain. I just want one of
these docs to say ok it crohns let's treat her and if it turns out it's not then I
will go ahead with the surgery and perhaps that will help.. Your story is so like
mine and I really do feel your pain.. Sorry for the long winded story but I am
sure you understand it :) :thumright:
 
Apologies for my spelling and disjointed message posting of my iPhone and it's really difficult to edit!
 
I am literally over the moon to find someone like me! (Obviously I don't want you to be ill, but, I've felt like a medical freak over the past year, with no diagnosis and everything). Oddly enough, I had a stomach bug and also malaria (twice) whislt abroad, and that's when my fissures worsened. I developed a 'side' fissure, which I think is almost impossible to develop as most are either towards your tail bone or towards your lady parts :) this side fissure had a tag next to it, and eventually the back and side fissure sort've joined to form a big ulcer which became infected.

This is a very inapporopriate question, but do you by any chance have a photograph of your ulcer? I took some photographs of mine (you cant tell it's me as it's just a bum haha) but It'd be so interesting to compare them. Maybe show our doctors and be like look! There are other people like this so give us drugs! If you have a strong stomach I could email them to yo, alternatively you will think I'm very weird and not talk to me again ;)
 
Kelkel said:
So I suffered extreme pain untill my CRS referred me to a GI he was great and said the same looks like crohns but inconclusive started me on cipro and flagyl for a month which was no help for the pain so I went for a third round of Botox. This has helped but I still have a huge hole and lots of blood when having a BM.
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I was also on 'flagyl' (or metronidazole as we call it in the UK) for 6 weeks at quite a high dose and like you, no improvement. And yes 'huge hole' is very true with me too and blood with a BM, even though my BMs don't hurt (unless I'm constipated. I think that's what started this all off as I've been prone to constipation since childhood, it's goes from C to very loose alternately every few weeks.)

Out of interest how old are you? I'm 23 and this all started getting worse when I was 22.
 
Hi Hannah,

I have never had a fissure before this is my first one and I strongly beleive it was caused from the bug I picked up in Thailand. I still have some doubt I have Crohns but with it forming an ulcer it's very strange..
No I don't have a pic of it and I have never seen it it is a bit deeper in I can see the start of it from the skin tag excision site but that's it. I can never get the mirror on the right angle to see it. I can try have another look and see if it compares to your pic.. If u wish to email them to me. I can only go by what mu CRS has said an he has said it's a large hole. I have also had my sister look for me as I was worried it was getting infected at one stage was so painful and oozing and she said it's a big hole to.
I have so much pain during and after a BM the pain is usually there all day never leaves me :(
I am 29 turning 30 in November before this I was very healthy no probs at all so it has knocked me! When do u have your follow up? Ive still got 4 weeks it seems to go on forever!!
 
Kelkel said:
Hi Hannah,

I have never had a fissure before this is my first one and I strongly beleive it was caused from the bug I picked up in Thailand. I still have some doubt I have Crohns but with it forming an ulcer it's very strange..
No I don't have a pic of it and I have never seen it it is a bit deeper in I can see the start of it from the skin tag excision site but that's it. I can never get the mirror on the right angle to see it. I can try have another look and see if it compares to your pic.. If u wish to email them to me. I can only go by what mu CRS has said an he has said it's a large hole. I have also had my sister look for me as I was worried it was getting infected at one stage was so painful and oozing and she said it's a big hole to.
I have so much pain during and after a BM the pain is usually there all day never leaves me :(
I am 29 turning 30 in November before this I was very healthy no probs at all so it has knocked me! When do u have your follow up? Ive still got 4 weeks it seems to go on forever!!
Click to expand...

Seems likely, some say Crohn's is triggered by a virus or a bacteria (so I've read) might not be true but my doctor said that a theory is it starts with a strong reaction from the body to a virus so maybe if you got sick it could've started something?

I saw mine once and that was enough tbh :S but I had to take some photos at the request of my doctor so I had to look, it was scary tbh. I'm just interested whether they look the same. Mine's not very deep but it covers quite a large area. I'm so sorry you're in so much pain :( the only good thing about having my ulcer cleaned out was that there's no pain now. But before when it was infected it was AGONY. When I had a BM I used to literally gasp out loud with pain, I couldn't walk, it was horrendous, so I feel so sorry for you.

Do you get aching from the butt muscle too or just burning/stinging from the ulcer site?

It's hard isnt it thinking your healthy and then bam you're ill and having to attend loads of drs appointments etc, with no one knowing what's wrong with you. It's hard to deal with emotionally.

I've sorted out a different treatment now, I'm getting a steroid ointment to put on it twice a day to reduce inflammation to aid healing (or start healing). That might work... otherwise maybe Remicade. What treatments have you tried so far??

I'm lucky I have private healthcare so I can see my doctors when I like and I email them too, I'm really really lucky otherwise I'd be waiting for the stupid NHS.

Hi from England by the way, it's 8pm here on Monday night but it's 5am where you are Tuesday morning so I guess you'll get this as you're getting up and I'm going to bed! :)

Hannah
 
Hi Hannah,
You heard back from your GI about whether he wants you to start a bee hive up your bum before remicaide or if he is happy to start it as dermatologist thinks it is likely crohns?
 
littlemissh said:
Hi Hannah,
You heard back from your GI about whether he wants you to start a bee hive up your bum before remicaide or if he is happy to start it as dermatologist thinks it is likely crohns?
Click to expand...

Hahaha, if you're referring to the honey dressings I have them and I've used them! They smell delicious! ;)

Only problem is theyre messy and painful because the gauze is really hard and rough, not to mention sticky. I'd rather eat the honey than stick up my butt, but no wasp attacks as of yet!

I've finally got hold of the dermatologist who's fixed my buggered up prescription so I'll be using Betnovate C on my ulcer for a week or two, if that doesn't help my lovely GI will probably prescribe Remicade :)

Thanks for asking :D
 
Yeah perhaps it did trigger it who knows? My joints were swollen before I got sick so maybe the bug just made it angrier!

Yeah I have muscle ache and burning and stinging also.. The botox has made it better but it's still there. I have been like you in the sense I can't walk and have been screaming whilst having a BM it is sheer hell.

I have just had botox three times and had the cipro and flagyl but that's it so far my GI is talking about trying me on humira if I have no improvement which is likely to say it won't. I have tried all the creams etc... and am currently trying acupuncture and Chinese herbs figured it can't hurt!

I am also private here in OZ but my CRS is do busy sometimes I literally have to beg for an appointment! Our public health system is not the best either my GI is public and when I went for my follow up I saw a trainee who told me I had been using the ointment all wrong for the last 10 months needless to say I nearly hit him!!!
I now have a referral to a private GI but still have to wait 4 weeks to see her as that was her first available appointment. I am not doing to bad atm I can manage the pain to get to work etc but I just want it to start healing...

How is the steroid cream going have you started it yet?
How did they clean your ulcer out? That is interesting it stopped the pain I know my last round of Botox he did scrape a bit of it out but didn't eliminate the pain.

How did you manage to take a pic I think I must be to unc to do it as I have tried to look many times but can never quite manage it :)
 
Swollen joints is a symptom of Crohn's so maybe it was in your system before and now it's just starting to appear?

That's really interesting that you get the muscle spasms too, I don't think sphincter spasm is typical of Crohn's, moreso of anal fissures.

I think my ulcer hurt so much because it was infected, is yours infected? A healthy wound shouldnt hurt unless it is disturbed - mine hurts if its cleaned and dressed, but not the rest of the time. Having said that though mouth ulcers hurt like a bitch so I duno!

Ooh hows the acupuntucer going? Where do they stick the needles?? I picked up my steroid ointment tonight so have put it on now. Going to use it twice a day for two weeks and hope it helps! If not like you I'll be having systemic treatment.

That's terrible about the ointment! How were you using it wrong? Also, what ointment is it? I'm using Betnovate-C, it's a steroid ointment. I hope the next 4 weeks go quick and you must let me know what your new doctor says!

I had my ulcer curretaged, it means the infected tissue was basically scraped away - it was a small operation under general under anaesthetic. After I had a raw open wound which was packed, and then healed up to a shallow ulcer.

Errm, I sortve squatted and aimed - took a few goes but eventually I got the right angle!!
 
mouth ulcers are almost constantly being rubbed and they're never able to dry out. I think thats why they hurt constantly. most of the mouth ulcers I've had for the past month are gone now. There's just one left.

I was dx'd with fibromyalgia re: joint and other pains, because my RH factor is below the level considered positive even though I get swollen joints and nodules and plaquenil (treatment for lupus) helps with the symptoms. In doing research, I've noticed that a lot of people seeking diagnosis for a potential auto-immune disorder either get dx'd with fibro or have unspecified joint issues. I know that doesn't say much other than they do seem to go together in some cases.

as for taking pictures of your ass: I have a mac with a built in webcam so I set the thing up to take a picture then bend over and hold my cheeks open. Takes a few tries, but its the easiest way I've found to see what is happening back there. I guess it'd be similar to getting a camera set up in the right place with a timer.
 
Hey Hannah,

So sorry haven't seen this place lately and am just checkin in for a quick visit.

O.M.G. How much crap have you had to put up with lately, good on ya though my dear friend. you hang in there and when my exams are over i will check in properly with you.

Massive enormous hugs

bruscar

XX
 
Hmmm yeah that's interesting that spasms are not typical with crohns as I have my doubts that I have it... Yeah I get crazy spasms still now even after three goes of botox and my last one he used alot in there.
I don't think it's infected my skin tag excision wounds were but not the fissure, I do get a bit of mucous discharge throughout the day do you get any of that?
Mouth ulcers are a ***** I seem to go four days the. I get an outbreak that lasts weeks and I never suffered from them before. I forgot to mention that I was on methotrexate and plaquenil prescribed by my first rheumy for the swollen joints and mouth ulcers I used them for 7 months I did not think they did anything at all was like taking lollies!!

Acupuncture is good so far relaxing at least not sure if it will do anything but it won't hurt- they stick the needles in my feet, legs, hands, forehead and one on the top of my head. Chinese herbs are disgusting but I'm persevering...

I was using rectogesic and protesecdyl which was not helping at all and apparently I had been applying it all wrong. I am using a Chinese one now from the Chinese doctor with herbs etc... in it seem to help a bit... Let me know how the steroid ointment goes hope it helps!!

I may end up going in earlier than 4 weeks as the pain seems to be getting worse as the Botox may be wearing off!!

Lol Carrie that is a good idea I may try that with my laptop it would be interesting to see what it looks like- I find it hard to squat as my knee is so inflammed I can't really balance that well so that may be the best way to go :)
 
I have had the same problem, only I was already diagnosed with Crohn's in the ileum, so I was on Pentasa and it didn't quite get to where you are.

I went to the doctor (Internal medicine, not GI) for the fissures because they would get infected and on my HMO plan I couldn't see the GI for it. It was so bad multiple times I would be advised to go to the ER.

OK, so I go to the ER, and some scruffy 28 year old intern doesn't even introduce himself, just asks "What do we have?" and procedes to raise the exam table and shine a huge light on my rear. Then I explain what's been happening and he says "You know, maybe if you got a Brazillian wax you'd get the right diagnosis." Oh, yes, he did.

My husband was in the room and what he said is unrepeatable here, and he actually chased the doctor out of the room and down the hallway. He yelled and cussed so loud and demanded to see an on-call GI. When the GI came in, he took one look and knew right away it was perianal Crohn's and gave me the prescriptions for Canasa, Cortifoam enemas, Cipro and Flagyl.

My regular GI followed up a few days later and set up the Remicade. Thank God, after one infusion,an 8 month ordeal was over.

FYI The infection has to clear though, before they start the Remicade.

I hope you get the right help soon, because it's just the worst. You just gotta keep on fighting until someone listens, unfortunately; in my 20+ years with Crohn's that happens more often than not.
 
OMG I cannot beleive he said that to you I have heard it all now...
For one obviously he has no idea how much pain it produces to even contemplate waxing down there!!
My jaw is literally on the floor glad your husband was there I am beginning to think I should take my partner with me to these doc appointments at least he would fight harder than me- he is very angry about what these docs say and keep sending me away...
Glad you got sorted there there is hope :)
 
Thanks Bruscar :) that's really sweet! I'll try and stay optimistic.

Hey Kel, yeah I get 'discharge' from the wound. Mine's definitely not infected but I've been told all wound produce a discharge that might sometimes be a little unpleasant and either yellowy or greeny colour. I always use a gauze pad to keep things hygeinic.

I get mouth ulcers now, well it's not really ulcers its more like inflammed patches in my mouth that swell up and then go down after a few days, but it can be really painful. I'm not sure if I do have Crohn's or even if these are related though.

With the rectogesic were u putting it 'on' as opposed to 'up'? You gotta put it up there! Lolll

You should definitely go to ur doc if ur suffering - they cant leave u in pain! be assertive and just say its too painful to cope and you need it sorting :)

If you manage to take a laptop photo let me know if u wana compare pictures!! :D
 
Hi Hannah-

Hopefully you get some answers soon. My CRS told me it is rare to have it isolated only to the peri-anal area. He told me under 10% of the people with Crohn's only have it in the peri-anal area. That is why I think I have suffered for so long. Took me 6 years to finally be diagnosed....... For me they found a some inflamation on the ileocecal valve so that helped confirm Crohn's. Both my CRS and GI said most of the time if you have the disease in the peri-anal area they find it at the very end of the small intestine. So my GI made sure he had a long enough scope to reach that area.

In another thread you asked about my Remicade adventure. So I have had two loading doses now. I think it has helped with the fistula - draining less. Though now it is bleeding a lot so I am not sure if that is good or not. The one fissure seems about the same. So far no miraculous improvement I have read about some people experiencing. I have one more loading dose to go in early Sept. I know it can take 6-8 weeks to heal a fissure under best conditions. So it may take awhile even if it is working. I keep hoping I can banish these fissures for awhile at least......

Take care.
 
Ouw!!!

PaulsPain said:
Hi Hannah-

Hopefully you get some answers soon. My CRS told me it is rare to have it isolated only to the peri-anal area. He told me under 10% of the people with Crohn's only have it in the peri-anal area. That is why I think I have suffered for so long. Took me 6 years to finally be diagnosed....... For me they found a some inflamation on the ileocecal valve so that helped confirm Crohn's. Both my CRS and GI said most of the time if you have the disease in the peri-anal area they find it at the very end of the small intestine. So my GI made sure he had a long enough scope to reach that area.

In another thread you asked about my Remicade adventure. So I have had two loading doses now. I think it has helped with the fistula - draining less. Though now it is bleeding a lot so I am not sure if that is good or not. The one fissure seems about the same. So far no miraculous improvement I have read about some people experiencing. I have one more loading dose to go in early Sept. I know it can take 6-8 weeks to heal a fissure under best conditions. So it may take awhile even if it is working. I keep hoping I can banish these fissures for awhile at least......

Take care.
Click to expand...

Yep I've been told it's rare too, probably why I don't have a diagnosis yet.

Thats's good that Remicade has helped with your fistula a bit, shame that no miraculous improvement though :( I hope you can banish the fissures too.

I've been using Betnovate C steroid ointment on my perianal ulcer since Tuesday night now. I'm not sure if it's working - I took a photo of it and it looks narrower but it might just be the angle I took it at.

The bad news is it seems to have become a lot more painful since using the steroid. I checked with my doctor and she wasnt concerned, she suggested the wound was getting dry (I'm not sure about that.) It used to be completely pain free unless it was touched, now it hurts to wash with the shower head, dry with a hairdryer etc. I also used some honey dressings - gauze impregnated with honey - before and it was slightly uncomfortable for a little bit then fine, but I just tried a bit now and it F***ING HURT!!! It hurt SO much, it burned and stung like nothing else, it was like it was before my op. I had to rip it out and jump in a hot bath for relief. It felt a bit better but now I'm sitting in bed and it's still stinging and burning, and this didnt happen before. I'm not sure if the steroid has irritated the skin or the wound is healing and growing new nerve endings etc and thats why its more painful.

Thoughts???
 
Hi Hannah-

That sounds painful. Putting honey gauze and ripping it off even sounds more painful..... I have been told by all the CRS's I have seen in the group here that Steroid creams don't do anything for a fissure. I have read also that it can thin the skin. So I am not sure about if the stuff they gave you is special in some way? I was given a steroid hemorrhoid cream by a bone head GP when I first started having issues - it didn't help one bit and stung like mad. After that I figured out quickly what kind of doctor I should be seeing - CRS.

I can't believe they don't start treating you for Crohn's since it seems like you have a lot more signs than I even did. I have been tested for granuloma's 3 times now. The tests have all been negative. My blood work is all normal, B12 level good, C-reative Protein of only 1.5. My main CRS likes to use the line " If it walks like a duck, quacks like a duck, looks like a duck, it must be a duck". That is what he told me early on when I had doubts about Crohn's since I wasn't having the typical "classic" GI symptoms. He called my fissures "ulcers" and that is why he thought Crohn's once he saw it up close at my LIS surgery. That is when he referred me to a GI for a colonoscopy last fall and I finally got some answers of why I couldn't heal.

Well I hope that you get to start Remicade soon to see if that helps. It baffles me that the doctor's are still messing around with creams when you have had this for so long. Obviously something isn't allowing your body to heal normally.
 
The dermatologist prescribed a steroid because if it is crohn's then the ulcer is caused by imflammation, and a steroid would reduce inflammation, just like how crohn's sufferers take prednisolone during a flare up because it reduced inflammation. It might be working and the pain might be from healing but I don't know cos I never see it cos its on my backside :(
 
I've just gone from feeling fine to feeling totally depressed, I went to delete the photos I'd taken of my ulcer and just looking at them upsets me so much. Thank god I don't have to see the great gaping wound in my body ever because I don't know how I'd get out of bed in the morning. Let's be honest the steroid ointment isn't doing anything, it isn't doing anything drastic anyway. And who says Infliximab will even work? No one's even sure I have Crohn's I'm so scared I'm gna be stuck with a wound forever that wont heal :(:(
 
Hi Hannah-

Sorry you are feeling down.

If it is indeed Crohn's there are a lot of drugs to try..... So there is hope!

The two drugs that seem to come up for peri-anal disease when I have been researching medical papers is -Azathioprine(Imuran) and Remicade. I am now on both. Started Aza first to see since Remicade had me freaked out. On the fissure forum, a person had azathioprine completely heal all his issues after years have battling.

So hopefully you will get results soon and keep pushing the docs for results.

Take care.
 
Hi Paul, thanks for replying, I feel better after reading about the person who's fissures healed. Did the person on the forum have Crohn's too? Sometimes I just feel like there's so little hope and I'll be stuck like this forever and it's such a horrible terrifying feeling. You know the sortve 'we can send a man to the moon but no one can fix my ass' type feeling? It's frustrating.

My lovely GI mentioned aza when I saw him ages ago so I know he's on the right track, he's a very good doctor. I just have this sick dread that I'll have the drugs and nothing will happen. I personally think I should have a temporary colostomy to help my butt heal but I've not brought that up with anyone yet...

Thanks for the support it truly does make a difference to read people's supportive comments
 
aww hannah, i'm so sorry you're in more pain again!!

i walked past a honey shop yesterday and thought of your dressings and was so hoping good things were happening! (because for some mysterious reason there is a whole shop dedicated to honey in the centre of the city where i live haha...i have no idea why lol :D)

is your follow-up dermatologist appointment this week? hopefully the dr will see that the cream doesn't seem to be helping and will move on!

take care! im sending you happy, healing thoughts!

kate X
 
Aw thanks Kate :)

Haha I'm really sorry if I've ruined honey for anyone after telling you my story ;) I personally find the dressings quite tasty haha, but I can't use them now cos it hurts too bad :(

My app with my dermotologist is Tuesday, but I don't think there's much improvement. Hopefully after that I can see my GI again and get some other treatment.

Thanks for the well wishes!

xx
 
hannah-rose said:
Hi Paul, thanks for replying, I feel better after reading about the person who's fissures healed. Did the person on the forum have Crohn's too? Sometimes I just feel like there's so little hope and I'll be stuck like this forever and it's such a horrible terrifying feeling. You know the sortve 'we can send a man to the moon but no one can fix my ass' type feeling? It's frustrating.

My lovely GI mentioned aza when I saw him ages ago so I know he's on the right track, he's a very good doctor. I just have this sick dread that I'll have the drugs and nothing will happen. I personally think I should have a temporary colostomy to help my butt heal but I've not brought that up with anyone yet...

Thanks for the support it truly does make a difference to read people's supportive comments
Click to expand...

Hi Hannah-

Here is a link. http://analfissure.editboard.com/t2112-my-break-through-with-stubburn-fissures-and-fistulas#47187

He missed spelled Imuran with Amuran and Crohn's with chrons . But again it sounds like he may have only had peri-anal crohn's. I think that is what is tough is there isn't one test that can confirm Crohn's..... And with peri-anal disease it is even worse since a lot of times it is diagnosed by site only. That is basically what happened with me. I asked several CRS's through the years about IBD and they always blew it off since I don't have the "classic" GI symptoms. Developing an abscess and high fistula is kind of what pushed it to the next level for me. But it took me about 5 years of fissures only (and pure hell) to getting the abscess so I assume the disease progressed over that time.

I know all to well what you mean about the frustration. I am still at this level myself since I still don't have complete relief either. I just keep plowing ahead hoping something will work. For me, the LIS provided a lot of relief. It took a long time to heal but it was a godsend for me. At least now my fissures still hurt but I am not getting the crippling muscle spasms that would last 4-8 hours.

Take care.
 
Thanks Paul that thread is really interesting and seems similar to my story. I almost wish I had a fistula or an absess too because that would prove it was Crohn's and I could get some treatment that would work.

The fact that I had fissures/ulcers at the 6 o' clock and 12 o'clock but then developed one with a skin tag at the 3 o' clock position doesnt sound normal, does it? People dont often get fissures that arent front or back, I might push that point when I see my GI next.

I'm glad you got some relief with the LIS - I think the damage done to my butt already would make an LIS a bad idea and luckily I dont get too much muscle spasming either. (That's another thing that suggests it's not just fissures, when the lovely doc stuck his finger up my butt he said he couldn't feel any muscle damage or muscle spasming.)

I really hope you can find something that can help you soon Paul, you've been a great support to me on here and someone I can really relate to who understands.

Hannah
 
hannah-rose said:
Aw thanks Kate :)

Haha I'm really sorry if I've ruined honey for anyone after telling you my story ;) I personally find the dressings quite tasty haha, but I can't use them now cos it hurts too bad :(

My app with my dermotologist is Tuesday, but I don't think there's much improvement. Hopefully after that I can see my GI again and get some other treatment.

Thanks for the well wishes!

xx
Click to expand...

haha you haven't ruined honey for me! i think manuka honey is kinda weird tasting anyway lol. i actually think strange dressings are super interesting haha. i had a dressing made from of seaweed after my operations. less tasty, but still interesting! ;)

i hope your appt goes well today!! (today? i fail at time differences haha, its tuesday night already here)

kate
 
Hey everyone! Good news! :D

I've just come from my consultations with my GI Doctor and my Dermatologist.

My dermatologist says that after using the topical steroid ointment for one week she can see some difference - apparently the edges of the wound are flatter and less inflamed. (I don't look at it myself because it freaks me out.)

My GI Doctor has said continue to use the topical steroid for three more weeks and then if the improvement isn't substantial enough I will be put forward for Inflix/Remicade :D

Yeyyyyy drugs! (Obviously 'drugs are bad' but I've been struggling with topical treatment for eight months with no effect.)

I'm really, really, really happy with how my treatment is progressing, I'm one step closer to getting well again :) even a bit more well would be enough for me.

Even better, my GI said, 'good news, we all agree it's Crohn's,' so I think that's almost a diagnosis, the proof will be in the pudding - if Crohn's treatments work, I must have Crohn's. I'm so happy to be so near to getting a confirmed diagnosis. I have this weird fear that it'll turn out I don't have Crohn's and I'll be a complete fraud and I'll have to leave the forum!

Anyhoo, just happy to be giving a positive update :) thanks all for the support so far, i genuinely wouldn't retain my sanity without you guys :) I'm so greatful you've all been part of my rocky journey so far.

Hannah

P.S. Kate, did you try frying the seaweed dressings and adding salt like in a Chinese restaurant? Yum! Also, it's 8:30pm here in England, you Americans/Aussies and probably thinking about getting up right about now!
 
Hi Hannah-

I am glad to hear that you had some good news today. :dance:

That is great that the topical treatment is working. Hearing things are healing is always exciting news. It is so hard to tell sometimes by trying to look yourself.

That is good the docs are in agreement that is probably is Crohn's. At least now you have a treatment path you can start following.

Take Care.

P.S.
I know the time difference between England and here all to well - 6 hours. I have been working on a project with an English company since last December. So I always have the joy of 8am teleconferences so we can talk to them during their work day. I always feel like I am half asleep when I talk with them.
 
For those of you with the mouth ulcers, I'd strongly recommend getting your Complex B vitamin levels checked and your iron levels if you haven't already.

To the OP, I know this seems far fetched, but based upon your long history "down there" have you ever tried cutting gluten out of your diet?

I hope you feel better soon!

*hugs*
 
Thanks paul :)

David, do you really think cutting gluten will help my butt? I don't have digestive symptoms (not severely anyway) so I never throught about changing my diet. I never put gluten on my butt so not sure how not eating it would help ;)
 
Hahahahah. Well maybe you SHOULD put some gluten down there then!

In all seriousness, here are two studies that suggest the possibility of Proctitis (which can cause fissures/ulcers) caused by gluten:

Mazzarella, G; Paparo, F; Maglio, M; Troncone, R (2000). "Organ culture of rectal mucosa : in vitro challenge with gluten in celiac disease". Methods Mol Med 41: 163-73. PMID 21374439.

Ensari, A; Marsh, MN; Loft, DE; Morgan, S; Moriarty, K (Sept 1993). "Morphometric analysis of intestinal mucosa. V. Quantitative histological and immunocytochemical studies of rectal mucosae in gluten sensitivity". Gut 34 (9): 1225-9. PMID 8406159.

Your long term occurrence of symptoms, poor response to treatments, and other symptoms you list make me wonder and I'd actually be willing to wager a little money that I'm right. Frankly I'm a little dumbfounded that your doctors haven't tested you for gluten intolerance? Or have they? What do you have to lose but an anal ulcer and delicious, delicious gluten. Oh god I miss good bread. :cry:
 
Lol I'll suggest a baguette dressing to my wound care nurse next time I see her ;)

That's fascinating though David thanks, I'll give those studies a careful read. I'm not sure I'm strong enough to give up gluten... but I would do anything to heal! A friend of mine has just been diagnosed with Coeliacs, so I could support her in her diagnosis :) do you no longer eat gluten then? Do you have Coeliacs or does gluten just aggrivate your Crohn's?

What on earth do you eat without gluten??
 
Ps is proctitis linked to Crohn's? (Just googling it now.) No doctor has ever mentioned proctitis to me before, do you know if Crohn's sufferers can get proctitis or is it just perianal Crohn's?
 
Mmmmmmm, baguettes. *drool*

Frankly, if I had a giant ass ulcer I think I could give up gluten pretty damn easy. I personally gave it up not because I have Crohn's but because I have Lymphocytic Colitis and some other pretty terrible symptoms I've been trying to control through diet. I've been on a vegan / gluten free diet for a couple months now and I hate it. I love meat and bread but I hate pain more so here I am whining and drooling over butt baguettes.
 
That is true, I've gotten too used to it, or perhaps I deal with my pain emotionally by eating giant pizzas and delicious gluteny snacks lol.

I'm glad your diet is helping but that does sound like a miserable way to eat. My Coeliacs friend obviously cannot eat gluten, but she also has a soy and lactose intolerance - and she's vegeterian!! She basically eats vegetables and ready salted crisps.

Why are you vegan btw, is meat bad?
 
All the different types and classifications can get confusing and I'm still learning them, so forgive me if I get one of these wrong.

Perianal Crohn's is Crohn's with anal involvement often characterized by abscesses/fistulas/stenosis/fissures/hell on earth. Usually the Crohn's is active elsewhere as well and only about 5% of Crohn's patients have Perianal Crohn's.

Proctitis is simply inflammation of the rectum and anus and has many potential causes including Crohn's or Ulcerative Colitis where it is then "Autoimmune Proctitis". If someone has Ulcerative Colitis that is just in the rectum, it may be referred to as "Ulcerative Proctitis" according to, "Inflammatory Bowel Disease - An Atlas of Investigation and Management".

Hope that helps :)
 
Thanks David, that all makes a lot of sense. So far my GI has said he and all my other doctors are in agreement that I have Crohn's, but now I'm wondering why they think Crohn's and why not Ulcerative Colitis? I suppose I'll have to ask him when I see him. He's also said about perianal Crohn's, but I suppose Autoimmune Proctitis would be more correct, although I do have some other very minor symptoms.

God it's all so confusing.
 
I edited the above a little as it wasn't very clear initially, my apologies.

hannah-rose said:
Why are you vegan btw, is meat bad?
Click to expand...
I think meat is wonderful and love it. I'm on the diet in an effort to improve my symptoms.

hannah-rose said:
Thanks David, that all makes a lot of sense. So far my GI has said he and all my other doctors are in agreement that I have Crohn's, but now I'm wondering why they think Crohn's and why not Ulcerative Colitis? I suppose I'll have to ask him when I see him. He's also said about perianal Crohn's, but I suppose Autoimmune Proctitis would be more correct, although I do have some other very minor symptoms.
Click to expand...
I'm sure what your doctor says is more correct than what I say :)

I WOULD try cutting out gluten for a month though and see how you feel.
hannah-rose said:
God it's all so confusing.
Click to expand...
Indeed. Sorry if I made your confusion much worse :(
 
Hannah, from what I understand, the main differentiating factor between a dx of Crohn's or UC has to do with what's screwed up, how it's screwed up, and if it's all one long section or multiple sections.

If your issue is all in your colon you may get dx of Crohn's if you have fistulas, stenosis, granulomas, and/or patches of ulcers/inflammation instead of only one solid patch.
 
I hope the diet works for you David, and one day you can maybe return to eating delicious meaty glutenous meals :)

Don't worry you didn't confuse me more, you simply gave me a lot more buzz words to confuse my GI with next time I see him :p he loves it when I get smart about my illness lol keeps him on his toes

I'll give the gluten thing a try certainly, might have to spend some time mentally preparing myself but it would be interesting to see if it made a difference.

Carrie, I'm wondering why I never asked my Doctors why my diagnosis is Crohn's and not UC, I'm usually so good at asking loads of questions lol. My problem appears to be mainly my anus, although granulomas were found up inside my rectum. Also mild inflammation has been found in my colon. Seems to be patchy, that might be why it's Crohn's, but I'm going to ask at my next appointment.
 
i'm so happy you have good news! :D a plan with a definite timeline is sooo good and its fantastic that the steroid cream is working even if its just a little!

with the whole going gluten-free thing, if are going to have the blood test that checks for Coeliac's you have to be eating gluten at the time so keep that in mind. :)

kate

p.s. you got the time difference right! i was checking my mail before i went to work right as you posted your message.
 

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