Newly Diagnosed Crohn's - unusual symptoms

[KM1985]

Hi Everyone,

I'm a newbie and pretty nervous about posting on a forum but i'm at my witts end with the level of care i'm receiving and i'm in need of some advice.

I have been experiencing bowel problems for many many years. These symptoms include, blood, diarrhea, mucus and unfortunately never for as long as i can remember (8-10 years) a period of normal toileting habits.

I have also over the last possibly 5 years, been experiencing, changes in my voice, hoarseness aching throat and face, difficulty swallowing. Many bouts of tonsillitis, pharyngitis, strep throat and ulcers - i am a singer and this is affecting my career very much.

As well as those symptoms i regularly have swollen gums and face, red eye (which i was told was dry eye) and swollen eyelids/nose on an almost every 2 weeks and dry cracks in the corners of my mouth, Regularly swollen lymph nodes as well as large cystic lesions on my face (cutaneous crohns is currently being investigated as a previous biopsy showed granulomous ((unsure of spelling))

When i had my Colonoscopy i my results showed small apthous ulcers in terminal ileum (mild active ilietis) and widespread granulomatous inflammation throughout the colon.

From my understanding is that it is relatively mild? but my symptoms certainly aren't mild.

I have also been on a course of doxycycline and rifampicin which after 3 days i began vomiting blood. My dermatologist has suggested this may be due to ulcers in my stomach.

My questions are:

Should i have the throat and vocal symptoms checked and if so, how do i request that?
Should i be seeing a gastroenterologist and not a general surgeon
is anyone else going through the same?
Should the possible ulcers be investigated before i take anything?

I know these sound fairly straightforward questions but i always use my nerve when talking to the doctors and i need a bit of support behind me.

Thank you so much for taking the time to read

km

 

[valleysangel92]

Hello and welcome to the forum! I'm so sorry you're going through all of this but I'm glad you've found us. Please don't be nervous, everyone here is very friendly and we will always do our best to help, we might not always be able to answer everyone but we will be a shoulder to cry on at the very least.

Have you been started on any treatments for the Crohns itself or had anything discussed with you?

You mention you are under a general surgeon, if they are considering surgery then they will be the best person for you to see, but if not then yes you should be getting a referral to the gasteroenterologist as they will be able to discuss medications and talk to you more about the severity of your inflammation etc.

Often what the doctors are describing as "mild" really isnt that mild for us, they have seen the whole spectrum, and sometimes forget that even if what they are seeing isn't an emergency it is still having a big impact on that persons life. Believe it or not a lot of your symptoms aren't that unusual, eye inflammation and mouth/throat ulcers are really quite common in Crohns disease.

If stomach ulcers are suspected then an endoscopy is the best way to find out if they are present and how severe they are. All you should need to do is ask the surgeon to refer you for an endoscopy and explain the fact you've been vomiting blood, if they refuse to do it then you can ask for a second opinion. Having an endoscopy should also help to see if you have esophageal Crohn's (crohns in your throat) as this could explain why your throat is so sore.

In terms of waiting to take something, this is probably not necessary (as far as Crohns treatment is concerned) provided that the person prescribing the medication is aware of the chance of stomach ulcers being present so that they avoid giving you anything that could make things worse. It could be a good idea to ask for something like omeprazole or lansoprazole to help protect your stomach from any further damage, it could also help improve your throat issues as some of this could be that you have some acid reflux. You mentioned you were prescribed antibiotics, what was this for? If they are making the symptoms worse then it might be that you need to stop taking those until you know why. The other thing you should avoid is NSAIDs like Ibprophen and aspirin as these can induce bleeding and are known to cause stomach ulcers with long term use.

There are lots of people here who have been where you are now, we understand how daunting and unfamiliar it all can be when you're first diagnosed and we are all here to support each other as best we can. Please don't be nervous of posting, there is no such thing as a silly question. I guarantee there will be other people with the same questions who are too scared to ask so by asking you are helping them as well.

I also understand the nerves when talking to doctors but honestly there won't be anything they haven't heard or dealt with before. You do have to learn to be your own advocate and speak up when you disagree or think you need something done but honestly as long as you're respectful and honest they will not hold any of it against you, there's really nothing to be worried about. The more open you are about what's happening and the concerns that you have the more they can help you.

 

[KM1985]

Hi Nicola, thank you so much for your detailed reply, it has been a great help.

The antibiotics were to treat the cystic lesions on my face. I get these regularly and have had 5 surgeries to remove them as they make my entire face swell. They think this is either cutaneous crohn's or follicular occlusion which is also apparently related to crohns

I've read a bit about orofacial crohns and seeing the pictures, the cracks at the corners of my mouth it looks exactly like that! as well as dryness on my face. Does this need to be diagnosed and if so do you know how it is diagnosed.

I have no idea why he is seeing me, it was him that referred me for my colonoscopy. And he has said he will possibly refer me to a GI. I dont want to cause a fuss but i feel that given all my symptoms i should be being looked at further?

The medication he put me on was pred 30mg reduction of 5mg a week and then mesalasine following that.

With the amount of scars, cysts, discomfort on my face and the constant discomfort in my bowel im constantly fatigued.

I also have endometriosis and find that my bleeding gets a lot worse a week before and after my period.

I have had the endometriosis removed (none found on my bowel) just over a year ago but i'm not sure if it has come back... i also find that the 'old blood' that often happens during my time of month also seem to happen from my back passage too (sorry for the tmi)

My blood tests are rarely abnormal, sometimes my inflammatory markers are slightly up but nothing scary and i'm only slightly anemic at times, or pretty low on iron dependant on when they test. This often doesn't tie up with my symptoms either.

I'm currently not working and am trying to sing but i've had to cancel gigs because my throat no longer holds out for an entire song let alone 2 45 minute sets.

I'm finding myself feeling very alone, feeling that i'm not attractive to my partner in my personality and looks.

I'm still eating almost too much, despite it making me feel nauseous or uncomfortable. Either out of boredom or habit. Does everyone that has crohns loose weight?

I've been made to feel completely stupid throughout this entire experience and if this is cutaneous crohns on my face then i needent of had any of my operations

Hope to hear back from you,

KM

 

[valleysangel92]

Oh you've been through the mill and back haven't you.

Firstly, you are not stupid and I'm really sorry you've been made to feel that way. No one should ever be made to feel like that when seeking help.

A gasteroenterologist should be able to tell if what you have on your lips is orofacial Crohns simply by looking at it. I have cracking lips all the time and have been told that it's linked, when my crohns is well controlled it heals back up, some people get prescribed creams or special lip balms to help the healing. I personally just use Vaseline or lip balms with coca butter in them.

Pred is a pretty standard first treatment for a Crohn's flare, it really helps get a handle on the inflammation, but if you have a suspected stomach ulcer you really should be on something to protect your stomach alongside the pred, your GP could prescribe something so you don't need to wait for the next time you go to the hospital. The mesalasine is also pretty standard and as far as Crohn's treatments go it's actually quite mild. Keep an eye on your symptoms and be sure to report back to the surgeon if things aren't improving as this medication doesn't work for everyone as it only heals the surface layer of the gut so if your inflammation is deeper you may need something else alongside it to give maximum effect. As I say though it is quite mild so it's one of the safest medications so it's worth a try.

I would insist on seeing a gasteroenterologist, surgeons are great when you need an op, but really don't know enough about Crohns and all the different treatments to be able to deal with it on a long term basis. You aren't making a fuss, its really important that you get the right care. Crohn's can get progressively worse if its not managed well in the earlier stages, so the sooner you get under the right person the better. I was mis-managed during the early stages of my diagnosis and I believe it lead to me having a relapse after surgery (not the surgeon's fault) and needing more aggressive treatment than I may have needed if things had been handled correctly.

Unfortunately it seems quite common for women with Crohns to also have endometriosis, and its also common for people to have increased symptoms during certain parts of the menstrual cycle. I have had painful periods for as long as I can remember and my Crohn's is always more unsettled around that time. Honestly nothing is TMI here, we're all in the same boat. I've had that very symptom recently and it is important to speak to your doctors about it as passing old blood and vomiting blood is a sign that you have some bleeding in your upper digestive tract and this needs investigating.

In Crohn's disease blood tests are not the be all and end all, its entirely possible to have inflammation in your digestive tract and have totally normal bloods, my bloods will only show a problem when I'm REALLY sick, so please don't let them palm you off and tell you there's nothing wrong just because your bloods are alright. Aneamia is also a common thing with Crohn's, as we can't absorb nutrients from food as well as healthy people, so make sure they are keeping an eye on that.

In terms of fatigue, that's also common, your body is constantly fighting a battle with itself and trying to repair. It is good though to get them to regularly check your bloods to see what your vitamin levels are as lots of vitamin deficiencies can cause an increase in tiredness.

I'm so sorry you feel so alone, you really aren't. I understand what you mean, this condition really can isolate you as people can often struggle to understand what we deal with especially as it is, for the most part, an invisible illness. I think all of us have felt alone at some point or another and have struggled with self esteem too, but there are honestly so many of us in the same place you are now, and so many that have come out of the other side too. Crohn's really destroys my self esteem sometimes, the last thing I feel is attractive when I'm doubled up in agony or have spent all night being sick, but you are still you. All those things that made your partner love you are still there. Try talking to him about how you feel, be open and honest and let him be open too. He's probably really worried about you and just want's to help in any way he can. If opening up to him is too scary for the moment then just come and talk to us, we have a wonderful support section and even a womens only section if you'd prefer just to chat to the girls.

Eating more can be a side effect of pred, the "pred munchies" are a well known thing amoung Crohn's patients. Although weight loss is common in people with IBD it is not something that everyone experiences and every person is different, to be honest the symptoms can vary even from flare to flare.

Don't beat yourself up regarding the previous surgery, it was not your responsibility to know what was happening, it was the doctors.

 

[Melanie1]

Hi welcome to the forum.
I see nicola has already given you some great info.
Have you got an IBD nurse ? If not Id phone the hospital your under and ask if you can have an appointment with one .
Thake care
Mealnie

 

[KM1985]

Eating more can be a side effect of pred, the "pred munchies" are a well known thing amoung Crohn's patients. Although weight loss is common in people with IBD it is not something that everyone experiences and every person is different, to be honest the symptoms can vary even from flare to flare.

Don't beat yourself up regarding the previous surgery, it was not your responsibility to know what was happening, it was the doctors.[/QUOTE]


I'm not taking the Pred at the moment because i've been warned about the stomach ulcers and really dont want to aggravate anything until it's being looked at. so the eating is all me. I'm uncomfortable constantly but it seems as soon as i'm hungry i forget that i need to be careful. Or maybe i'm on self dertruct a little bit.

I am really really grateful for your replies (always worried i wouldn't get any- again a product of not being listened to). I will definitely post again hopefully more positively with an update or maybe with more questions.

You have reassured me no end for my appointment on thursday and will ask to see a gastroenterolgist and maybe make a list of the things i have spoken with you about so that i don't forget!

Thank you again

KM

 

[KM1985]

Hi welcome to the forum.
I see nicola has already given you some great info.
Have you got an IBD nurse ? If not Id phone the hospital your under and ask if you can have an appointment with one .
Thake care
Mealnie

Hi Melanie, thank you for your reply!
I haven't heard of an IBD nurse, how would i get an appointment with one of those? Is this something available in the UK do you know?

Thank you again,

KM X

 

[valleysangel92]

I'm not taking the Pred at the moment because i've been warned about the stomach ulcers and really dont want to aggravate anything until it's being looked at. so the eating is all me. I'm uncomfortable constantly but it seems as soon as i'm hungry i forget that i need to be careful. Or maybe i'm on self dertruct a little bit.

I am really really grateful for your replies (always worried i wouldn't get any- again a product of not being listened to). I will definitely post again hopefully more positively with an update or maybe with more questions.

You have reassured me no end for my appointment on thursday and will ask to see a gastroenterolgist and maybe make a list of the things i have spoken with you about so that i don't forget!

Thank you again

KM

I understand your concerns but unfortunately the longer you wait to start treatment the more chance there is of things getting worse, if you hold off for too long then you may end up needing a higher dose of steroids or more aggressive medications to get things under control. When you go on thursday, tell them you haven't started the pred yet and give them your reasons why, hopefully they will be able to come up with a compromise which might include adding in a stomach protector. The other alternative could be a steroid called budesonide (also known as entocort or budenofalk). This is a milder one than the prednisolone and hasn't got as many side effects, it takes a bit longer to work but can be a good option if pred isnt suitable. I can totally understand wanting to check for ulcers etc first but unfortunately you could be waiting months for an endoscopy so it's important to come up with a form of treatment that you can use in the meantime.

As for the eating, it will take you a while to get used to the fact you have Crohn's and that maybe certain foods are best avoided or only eaten in small amounts.

Definitely let us know how you get on, positive or negative we always like to know how people are doing. Definitely write a list of questions etc too, this is always helpful.

We do have IBD nurses in the UK but not every hospital has them so it may be that yours doesn't have any. Usually though the protocol is for newly diagnosed patients to be seen by the gastro consultant at first to get a treatment plan sorted out and then be seen by the IBD nurses for monitoring or if they have a problem between consultant reviews.

 

[KM1985]

You have no idea how valuable your advice and information has been!! thank you so much!

I will definitely do as suggested. Unfortunately the general surgeon i am dealing with often interprets what i say in the wrong way and i often end up with a letter that says things that i haven't actually said to him.

There is also a communication break down due to his secretary not passing on messages properly. Makes it all the more frustrating but thursday is the day i'm hoping to get things done

With your support i'm feeling a lot more confident about tackling it all!!

I will let you know about Thursday and fingers crossed i will be on the medication soon!!

KM

 

[EmmaLou]

Hi

Sorry to read you've had such a tough time!

I had a lot of similar symptoms, and because they're less common than some of the Crohn's symptoms, it wasn't suspected until I had a significant weight loss. Constant mouth ulcers to the point that my gums are still scarred, pomphlyx type eczema on hands and fingers, joint pain, random voice loss/hoarse voice of weeks at a time, cracks in the corners of my mouth, and gynaecological problems including a great whacking cyst (removed this time last year) which was blamed for the abdo pain, despite being on the left side, not the right where the pain was at its worse, and polycystic ovary syndrome.

It can be very difficult to tease out what is causing what, especially when so many have over-lapping symptoms.

Consultants and their secretaries can be tricky. I made a complaint through the patient liaison services (PALs in this neck of the woods) because I would tell the consultant about severe cramping after eating, and she would say "ooooh, look, pretty butterfly!" and her notes did not reflect the conversation at all, so when the IBD nurses made their ward round they didn't have a real reflection of what was going on. I now take someone in to appointments with me, and if on a ward have a nurse there for the doctors' round.

Try asking the admin/secretary to read your messaged back to you before you end the call and keep a note of when you speak to someone and what it's about. Invaluable if you go on to make a complaint.

On my last admission I was swearing up hill and down dale that I must have at least one stomach ulcer because of the amount of pain in the stomach region immediately after eating and got upset when they wouldn't do an endoscopy. The consultant kept saying it's severe Crohn's of the TI (lower right abdomen) and I couldn't understand how that would cause pain much higher up. Turns out they were right, because after having the TI removed the pain I thought was stomach ulcers disappeared. Very odd how this disease works.

If there are IBD nurses attached to your hospital, make friends with them. They have been absolutely invaluable, especially for translating consultant-speak into human-speak.

 

[KM1985]

Hi there,

sounds like you've had a rough time of it too sending healing thoughts to you!!

I have news!! i have been referred for an urgent gastroscopy (struggle to take codeine at the moment because it is aggravating my stomach)

So that is happening tomorrow and my general surgeon has requested that i be referred to a gastroenterologist.

They are also alomst 100% that the cysts on my face are being caused by crohns (results of the biopsy are be checked again) which means i'll be one of 9 recorded cases...ridiculous that they kept saying 'that can't be related'

Anyway,my gastroscopy is on Saturday so will update after that!!

Thank you all for your support

lots of well wishes

x

 

[ronroush7]

I hope the best for you.