I'm new and have an urgent question

[Lizzie]

Hello, I am undergoing tests to see whether I have cancer, ulcerative colitis or crohns and I am going out of my mind with worry that I might have a fatal disease. I'm getting symptoms that could be any one of these three diagnoses.

My question (and I may be asking in the wrong place so would appreciate being told if so) is can it be ulcerative colitis or crohns if I'm not really having an awful lot of pain? I've had a dragging feeling for a while, I had a very brief spate of horrible pain nearly a year ago, but mostly I just get stabbing pains and needle type pains that are nowhere near agonising. On a scale of nought to ten I'd give them between two and six at worst (six being the needle pains).

From everything I've read, both these conditions are extremely painful but I'm really hoping that maybe that isn't true in, say, the first year.

I am really desperate for some information on this from people with experience and will be so grateful to hear from you. Thank you so much.

 

[lj3]

its not necessarily so that the pain is excrutiating. for a long time i have had everything from what feels like gas pain to dull ache to a burning sensation which occurred when ulcers finally developed from the crohns. everyone presents differently and it will do you no good to freak out, just let the doctors complete their work up then you will know!

 

[xJillx]

Hi Lizzie and welcome! Yes, you can have IBD without abdominal pain. I was diagnosed without ever having any pain at all. I do now experience pain time to time, but by no means is it agonising.

People with Crohn's experience a wide variety of symptoms. No two cases are alike. Some people have lots of D, other have constipation. Some have horrible joint pain, others have none at all. Some bleed, others don't.

Good luck with your testing and I hope you get answers soon.

 

[Lizzie]

its not necessarily so that the pain is excrutiating. for a long time i have had everything from what feels like gas pain to dull ache to a burning sensation which occurred when ulcers finally developed from the crohns. everyone presents differently and it will do you no good to freak out, just let the doctors complete their work up then you will know!

Thank you for your reply. It's hard not to freak out, though, and I'm struggling at the moment, but you have given me a bit of hope.

 

[Lizzie]

Hi Lizzie and welcome! Yes, you can have IBD without abdominal pain. I was diagnosed without ever having any pain at all. I do now experience pain time to time, but by no means is it agonising.

People with Crohn's experience a wide variety of symptoms. No two cases are alike. Some people have lots of D, other have constipation. Some have horrible joint pain, others have none at all. Some bleed, others don't.

Good luck with your testing and I hope you get answers soon.

Thank you. I've just had blood tests and then I'm going for an urgent "scope" (I was too frightened to ask the doctor what exactly that was).

 

[Gwen pippy]

Hey Lizzie

Please try not to freak yourself out, I have Crohn's over 20yrs and the symptoms I have now are so different to what I had 5 yrs ago and they different from the original. I can send myself dizzy sometimes trying to figure these things out only to find I was way off the mark and I was making myself sicker with worry. There are treatments for all situations, the most important thing is that you are getting it checked out.

Hang in there

Gwen xxx

 

[ameslouise]

HI Lizzie and welcome!

The waiting is the hardest part and not having a DX can be really scary because you don't know what you're dealing with!

What kind of symptoms are you having? What tests are you getting? Why might the docs think you have cancer???

Good luck - I hope you find some answers soon!

- Amy

 

[lookame]

Pain, no pain, gas pain, dull achy pain...my most pronounced pain would be discomfot like things arent fitting right in my tummy. in other words my intestine are swollen...and I wouldnt call it "pain" it's uncomfortable. The pain I get is when I feel things digging and dragging across the ulcers in my intestine as well and the pain goes away after I have emptied the bowels. It's hard to explain what that feel like...then I get ga pain which is actually quite intense...I guess since I've been mistaken before..a good way to deal with it is tto try to relax take deep breaths and fan yourself if you start feeling sweaty...it helps

 

[gypsigirl28]

Hi lizzie and welcome.. good luck with your testing. Try not to freak out and see what the test say. Everyone respond diferently and not everyone is the same as far as symptoms and pain go.
Good luck

 

[Lizzie]

Thank you all for responding to me. My current main symptoms are blood and (mostly)mucus, often only passing a small amount of both, a dragging feeling and some pain but more scary than anything else, feelings of constipation at present (though diarrhoea was usually my problem and I've changed my diet drastically just recently, eating far less and trying to avoid insoluble fibre). There have been loads of other frightening symptoms like fluffy white mucus a while ago and long thin pencil type stools in recent days alongside more normal sized ones.


Blood has been mixed with stools but never with the diarrhoea, which worries me as I keep reading that the main symptom of Crohns is bloody diarrhoea.

I didn't really ask the doctor what the tests consisted of because I was just overcome with fear when she told me she was looking for cancer but it "may only be ulcerative colitis or Crohns". The nurse who did the blood test gave me a long list of things they were checking, including thyroid, liver function, white/red blood cells, I didn't take any more in. I have to go back for the blood test results on Monday. I will ask the doctor what sort of "scope" I am having.

I hope this still sounds like it could be Crohns or ulcerative colitis.

 

[Gwen pippy]

Hey Lizzie

Have you got someone who can go with you to your next doctors app, having a friend or family member there can be really helpful, they will be able to relay anything you may have missed afterwards and it can also be helpful to write down any concerns/ questions you have before you go and bring it with you, saves the whole "I should have asked that but forgot" situation.
The blood tests are all standard at this stage, so don't get to caught up in them.

Gwen xxx

 

[Lizzie]

Hey Lizzie

Have you got someone who can go with you to your next doctors app, having a friend or family member there can be really helpful, they will be able to relay anything you may have missed afterwards and it can also be helpful to write down any concerns/ questions you have before you go and bring it with you, saves the whole "I should have asked that but forgot" situation.
The blood tests are all standard at this stage, so don't get to caught up in them.

Gwen xxx

It's a good idea to write my questions down, I will do that.

I am not the sort of person who would want anybody along with me really, as I am a very nervous patient and I wouldn't like friends and relatives to see me like that. In fact I'm quite worried that they will insist on someone accompanying me for the "scope" at the hospital, as I don't know who I'd ask and I'd rather be alone but I want as much sedation as they will give me and I'm worried that if I don't take anyone they won't give me enough sedation.

 

[Gwen pippy]

Hey Lizzie

I fully understand, I went to through a stage where I didn't want anyone with me but please reconsider just one person, the support can be invaluable. You don't have to discuss everything with them, you can save all that for the site here and people who are going through similar situations to yourself, you can vent get angry or just have good ole chat.
Just with the scope thing, my hospital won't let people leave after scope unless they are accompanied, they want to make sure you make it home in one piece as sedative can still be in your system for a few hours after. Find out what scope you are to get and how much sedative they give in that situation.

Wishing you the best.

Gwen xxx

 

[ameslouise]

Hi Lizzie - It sounds a little irresponsible for your doc to mention cancer and then say "or you could just have Crohn's or UC" !! No wonder you are freaked out!

I've have read a million times on this forum about people having long, thin, pencil like stools - it's a classic Crohn's symptom.

Good luck getting the DX - hope it's "just Crohn's or UC."

- Amy

 

[kateel]

I was just diagnosed with Crohn's myself and I know how scary this whole process can be (especially not knowing what type of diagnosis you are going to get). I had many of the same symptoms as you and not much pain to go along with it either (although I do have more pain now). Anyway, I wanted to let you know there are many great, supportive people on this site! I have had so much help in the last two weeks from the kind souls on this forum. Any questions that come up, ask away...

 

[Lizzie]

Hi Gwen. If I have to have someone with me for the scope, I will need to think who it should be, either my husband (who works away and is very busy but is willing to drop everything to be there if required) or somebody less close. It's a matter of choosing the least bad option as I really and truly would prefer to be alone.

 

[Lizzie]

ameslouise, thank you for your reply. I see what you mean about the doctor - the way she spoke did make my blood run cold, but I think she meant well, she was young and English was not her first language so it perhaps came out more blunt/honest than diplomatic. I felt she was treating me reasonably kindly and with respect overall, but like you imply, maybe she needs to acquire a bit more of a bedside manner!

 

[Lizzie]

Hello Kateel, and sorry to hear you've been in a similar position to me recently. I have never known such fear and dread in my entire life.

Do you mind me asking if you suffered lots of mucus, as it's scaring me that mucus may not be a sign of Crohns, though I may have got that wrong because I've spent days on the computer looking into my symptoms and it's all getting a bit muddled in my head now.

 

[Gwen pippy]

Hi Lizzie
Maybe asking your husband, I know he is very busy and away but it sounds like he would want to be there for you and with him there from the start it may make it easier for you to talk about and for him to understand your fears.
As for the mucus thing yes it is common with crohns, I have had my fair share with and without blood.

Good luck Lizzie, I'm sending you strength and hope that all goes well.

Gwen xxx

 

[soretum]

Hi Lizzie,

I was diagnosed with Chron's colitis this week and I have many of the same symptoms as you....not a huge amount of pain at all unless I need to go to the toilet which can be very sore but is almost always better once I've moved my bowels or passed gas. I've never really had bloody diarrhoea but do get lots of mucus which is sometomes a little bloody.

Good luck with your diagnosis hope you get sorted soon xx

 

[Cookie]

Hi Lizzie,

I just want to share a little of my recent story with you because I can relate a bit to what you are going through. Even though I was diagnosed with Crohns 8 years ago (main symptoms were frequent D and perianal fistulas) I never really had blood. About 4 months ago I noticed blood in my stool. This was right before my period was starting. I did not see it again, so I just blew it off. Well, the next month, again right before my period I had blood again. I called my doctor because, like you, i was having bouts of D alternating with long pencil thin stools and constipation, abdominal cramping and bloating and TONS of mucous. He immediately did a colonoscopy and found only scarring in my colon, suggesting Crohn's in remission. He said I was experieincing symptoms of IBS. But I did not understand why the long thin stools. He said that, yes, this could be from cancer, but since I also had normal sized stools this was likely not the case. Apparently, long thin stools are frequently caused by contractions/spasm in the colon as it tries to move stool through. So I accepted this explanation and have switched to a gluten free diet and probiotics and am having much success.

Now back to the blood in the stool. I have now had it four times, each time right before my period and each time more than the last. It's either long thin strands, bloody mucous or a clot. I have consulted a GYN and he thinks it is intestinal endometriosis. Certainly not an ideal thing, but a far cry from cancer and definitely treatable. Incidently, endo can also cause bloating, contipation/diarhea, cramping and mucous.

I guess that my whole point is that when dealing with issues related to the bowel, there are many, mnay possibilities. i agree with Amy that it is irresponsible for your doctors to suggest cancer when there are many other possibilities. Try not to put the cart before the horse and try not to worry. Easier said than done, I know, but stress can make matters so much worse, regardless of the cause. in the meantime, maybe you might want to experiment with you diet and see if it helps. i also highly recommend gentle yoga. And please keep us posted on what you find out. Best of luck!

 

[Lizzie]

Thank you everybody so much for your support and for giving me hope that it might not be cancer after all. It's all so much more complex than just reading a list of symptoms from the web and I feel a lot calmer for the moment, at least. It is fantastically reassuring to hear that being able to pass normal sized stools some of the time is an optimistic sign

And it's right to say that stress makes everything worse. I've been burping a bit, unusual for me, and that put me into panic mode until I read that eating apples is notorious for causing burps. I didn't know that, as I don't normally eat them but I've been stewing them recently as I've recently read about the importance of soluble fibre rather than insoluble fibre.

 

[Joleen23]

Hey Lizzie , I got tested for it too , i was convinced that that's what it was. Got very down and depressed. Had my scope done. The biopsy were taken and it came back that it was crohns colitis.
I had Pain but not excrutiating , Blood and mucus , I had D but also got constapated too.
Don't know if this helps.
Good luck

 

[Lizzie]

Thanks Jolene23. I keep tormenting myself reading stuff on the internet about cancer that sounds just like my symptoms so it's good to try and keep some balance and realise that it's not absolutely definitely the problem.

 

[Lizzie]

I know this is an old thread, so please bear with me, but I just thought I'd let people know what my diagnosis was, in the hope that it will help anybody who is undergoing tests and very fearful that the diagnosis will be horrendous. I know it's frustrating when you're in that situation, you're googling frantically, then usually you have to wade through a long thread but more often than not you don't find out what the ailment turned out to be.

Well, it turns out that I've got proctitis, which I believe is the mildest form of ulcerative colitis, confined to the rectum and maybe part of the sigmoid. It's not cancer, despite the symptoms seeming so very, very similar.

That's the good news, and I was on Cloud Nine for a little while because I hadn't been given the death sentence I expected.

A little footnote, though, being a "glass half empty" person, I'm struggling to cope with my symptoms, which are sometimes quite unpleasant for what is the milder end of the continuum, and I really don't fancy the Pentasa tablets and suppositories that I'm meant to be getting from my doctor. Maybe I could ask a question in the ulcerative colitis threads about that.

But the main thing is, I was sure I had cancer, my symptoms were so like those of cancer, but I have proctitis. So, anybody in my position, don't give up hopes of a benign diagnosis until you've had all the tests! And thank you to the people here who offered me support with their experiences.

 

[David]

Thank you for the update and I'm so glad it wasn't cancer. And yes, ask away in the UC forum, I'm sure others could give you some insight