Crohns, bowel cancer, polyps etc! Please read!

[PeachyPossum]

Hi,

I'm hoping just to find some support, and faceless advice! I have been ill for a while with abdo pain in the right side of my tummy. I had a mid term diagnosis of endo. I went for laser surgery in May but there was no endo to be seen, the consultant thought it might be bowel related. I went back to my dr, one said I was depressed and prescribed anti dee's, the next told me I should be happy to take daily painkillers (strong) if I were in as much pain as I said.

I started losing blood when I went to the toilet, alongside a change in 'motions', one dr sent me away after a barium enema came back inconclusive, but the bleeding carried on and the senior dr at the surgery referred me. I have since had a colonoscopy, they removed 3 sessile polyps from the left side of my bowel, but found nothing on the right side where the pain is. I have been waiting for nearly 2 weeks for the biopsy results (10 ish in all, 3 for cancer, rest for crohns)

I'm really scared. These tumours would be normal at 50+, and maybe 1 or so at 40 but consultant was very concerned (I'm 30). I was told at the hospital I would now always be 'at risk' and will need tests & bowel care forever. My bowel problems have been better since the procedure, but I am still getting really bad sickness rhs tummy pain. I'm not as tired but feeling sicky so much takes it out of me.

Has anyone else been here? I feel like a freak, to be having these issues as a young women. I would be really grateful to find people who have been here, but the specific forums on the net are very depressive! I'm also useless at tinternet 'chat' so I'm sorry if this reads wrong!

Hi.

Lots of people have polyps, they can be genetic so are usually nothing to worry about. There is a possibility that they can turn malignant, this is why they like to remove them. This is why they wish to keep an eye on you. It's possible that one was bleeding, which is what has caused the rectal bleeding and the pain. You need to wait to see what the biopsy results are. Crohnes and ulcerative colitis do cause pain, diarrohea and slimy poop. They are managable conditions though. Try not to panic, take each day at a time and wait for the results, it's only then that you'll know what you are dealing with.

Hi PeachyPossum, really sorry to hear you have been unwell. I'm 30 and have Crohns Disease. It's a really debilitating disease - as is Colitis which is very similar. I am not suprised you are feeling ill, you've been through so much!

Just wanted to let you know that you are not a freak, plenty of other people just like you going through it. I also found the net forums very scary and a bit overwhelming!

If you want to PM with any questions about my experience, I'd be happy to get back to you! It's not the most delicate of diseases is it?! I always hate answering the standard questions from my very handsome gastroenterologist (sorry, spelt that wrong, it's been a long day!)

Hi Peachy, I haven't had exactly the same scenario as you but had a colonoscopy after a period of really bad pain and blood loss, They removed a polyp that was sent away for testing and diagnosed colitis from the inflammation they saw. I was treated with Asacol for the colitis which settled it down and I have not any further episodes.
The polyp turned out to be one of the type that can become malignant, so like you I am always going to be 'at risk' and will need regular colonoscopies.

I found all this very scary until my Dr put it into perspective by saying that in fact I was now at far lower risk of bowel cancer than the general population as I would be being monitored. So although it is all quite frightening, now they have removed the polyps and you will be monitored, the chances of this ever progressing to anything more serious are very remote. Remember as well that bowel cancer takes many years to develop ( my Dr said 10 to 15 years ) so if any further polyps develop, your regular checks will sort them out before they have a chance to become malignant. Also the type of polyps that we have had, although they can turn malignant, it doesn't mean they always do. It just means that some can, so they need removing.

Hopefully, as well. when your test results are back they will be able to get you on some treatment for your symptoms and you will begin to feel better.

My son was diagnosed with ulcerative colitis at just 18.
Crohns and colitis are often diagnosed in young people just starting out in their young adult life, so you are not unusual if it turns out this is your problem.
My son did spend his first year at university quite unwell, but is a bit of a perfectionist so dragged himself through it with an eventual change of drugs and a consultant that knew what he was doing as opposed to his first consultant.
He is 23 tomorrow and still taking several tablets a day but is well and is enjoying work after graduating this summer.
There is light at the end of this dark tunnel, and as his parents when he was first diagnosed the internet was a scary thing.
We still worry about him, but he really is as well as we could have hoped for at this stage.
If this is your problem, there is help out there.
All the best.

Thank you all for such lovely replies. I'm off to bed now (less tired than I was, but still bloomin tired lol) and would like to be less tired in responding to you all, so I will reply properly tomorrow. I wanted to just say a quick thank you as I already feel better about things just from this, after weeks/months of keeping stuff to myself reading some awful stuff on Google and some specific forums!

Thank you all again, and best wishes, I will come back tomorrow xx

I have had surgery to remove my large bowel, in my case it was for ulcerative colitis but I have met people in hospital who have had the same surgery for a hereditary disposition towards colorectal cancer, manifesting as multiple polyps. I just wanted to add that in case it turns out to be either of these conditions, the surgery is your last resort but even if it comes to that - I lead a completely normal life after having it. It sounds bad, and the support forums are full of the people who have had problems, but the vast majority of people carry on fine, with the pain, problems and cancer risk removed (and not bothering with forums).

Hope you feel better soon and they are taking good care of you, good luck.

Morning :)

Thanks again for the replies last night! It is brilliant to find understanding but not totally overwhelming people! I suppose the forums only deal with the one subject so they are heavy going!

Thanks Belle,I was under the impression I would get the results by today but when I spoke to the drs secretary in the week and she said no chance! Unfortunately they wont be in until after we leave for a family holiday out of the country so I wont get them now until just before Christmas. I think you're right, it's such a limbo until you know what you are dealing with, I like to get things done - waiting sucks!

There was no sign of inflammation, but they said it was likely just not visible at this stage, and I'm aware I will be sent for a CT scan in the new year.

Wine, I'm glad you're feeling better, and this is exactly how I'm looking at things when I can, they are very wise words and it is a relief to know after being dismissed by drs for years I am now being looked after and always will be! Did you get sickness too? I have tablets to take when it's bad and they help, but I have learnt to eat small portions which really helps.

Bearcat, can you adopt me!! You sound like a lovely pair of parents! Your son sounds like a grafter! It amazed me how bad some drs were about it all, even being told it was in my head and I was brave! I'm glad he has a good consultant now and has managed to graduate. How did the uni and his mates react to it?

Chunky, It so isn't a delicate disease lol. I think I shocked hubby telling him the tube for the colonoscopy was over 1m long! I did it without sedation as it was on a Saturday and I didn't want to lose the whole weekend with the kids (I work long hours in the week so don't see them enough). It does make me laugh when people question why I'm ill then get uncomfortable at being told my tummy isn't working properly, like the person who lectured me for leaving my salad & potato skin at a work lunch!

I think I will give the drs a quick bell later just incase they have heard anything back yet!

Thank you again for your replies xx

Morning Runner, sorry to hear of your surgery, but it sounds like it has turned into a positive result? Thank you for replying to me. you must have been very poorly to have needed the surgery, how long ago was it? It seems so bizarre, I was freaked out and scared of the scopy, but compared to what you've been through!! Do you still have to have regular care and checks?

best wishes xx

I'm so pleased that you sound so much more up beat Peachy.
I hope you do get the all clear before your holiday - remember that in terms of getting test results 'no news is good news' usually applies as they tend to get back to you very quickly if neccessary.

We will just have to get used to the regular colonoscopies won't we ? A few years ago I saw an item on Richard and Judy about a tiny camera that you swallow and it films your entire gastric system and comes out the other end! I would be very pleased if they brought that into general use but you would probably still have to do the bowel prep bit, which is as bad as the colonoscopy itself. Very brave of you to have yours without sedation - I always have to have the full works as I am so nervous.
x

Peachy
When DS first went to GP (husband had spotted blood around toilet bowl and asked if it was me!) he told GP that his dad had just been diagnosed with bowel cancer.
GP panicked I think and insisted he see a colorectal surgeon.
We had private health insurance through DH work and he saw a very charming surgeon who did colonoscopy and diaqnosed extensive colitis band put him onto asacol and seemed to say if he took it for 2 years he'd be cured.
DS did as he was told and 9 months later went off to Uni of Nottingham and seemed to be having a ball.
When he was home at easter 2007 he nearly fell asleep in his dinner whilst we had relatives staying from NY (this was at about 8.30 pm!)
We asked him to go to his GP at uni to get a referral for a second opinion.
At the end of his first year exams (after a 5 day youngsters visit to Newquay where he could barely function apparently) he dragged himself out of bed for a GP appt at the uni medical centre, almost didn't go, so tired and the GP was so concerned she got him back for a blood test an hour later.
The hospital flagged his blood test as urgent that day (hb 7.2 should be 14 - 15) and she called hhim back that afternoon and said that if we collected him the next day (week before end of term---only exam results to wait for though) then he could come home if we got a consultant appt asap.
First consultant was rubbish in our opinion, just in it for £150 a throw for 5 - 10 min consultation. Should have passed him straight on to a gastroenterologist as soon as he diagnosed him
Almost 20 months after first diagnosis our son has been seen by a wonderful gastro who encouraqged him in his most down time in quite a psychological way in our opinion (you cannot allow this disease to rule your life) in the summer of 2007 and twice a year since.
He changed his drugs when they seemed to pop out of him whole and has made DS into the lad he was before he was diagnosed(only he's now on mediation)
When he came home early in that first year at uni I think his closest friends were truly shocked that one of their friends was so poorly, but bless them they helped us clear his room on the 2nd floor in no time and loved to see him turn up well at the start of his 2nd year.
He takes his meds regularly (remember he's a perfectionist---apparently this is not such a rare disease in perfectionists) and graduated this summer with a Masters First in civil engineering. Now gone to work in an investment bank!
By the way his dad recovered well from bowel surgery in Nov 2005 and is fully fit an OK!

Sorry, meant to say he's on 'medication'

I wasn't trying to "top-trump" what you were going through - it is so horrible - I just wanted to put your mind at rest slightly about the worst case scenario. If it is a large bowel condition (UC or FAP), you can have the whole colon taken out and not have your life expectancy, nor quality, much reduced (in fact will be improved from how you feel before, I meant compared to other people). I find it hard to get the tone right when typing, hoped to sound reassuring . I had looked on forums when I was ill and it terrified me, I thought I wouldn't graduate, have relationships, a career or children. I now realise that the people doing these things are too busy for the forums (although I too am guilty of not joining and balancing it out a bit).

I had my surgery almost ten years ago (aged 19), so distant past - I have a yearly check up, but that is just routine and have had a wee patch up. I've been very lucky, my surgeon keeps completely informed on every area of my medical care (even sent me a letter of congratulations when I changed to my married name and later professional title). If it is a long term condition, you will notice that you are moved up a level, care wise, which is nice in itself and reassuring - you won't feel so isolated and adrift once you have a diagnosis. Good luck, you are not alone (people just don't talk about their bowels much)!

I have just found this tread when searching for help and advice. As I write, my 17 year old Step Son is about to undergo emergency surgery to remove his lower bowel.

He is a fit and healthy lad and was well until a fortnight ago when he started with constant D & V. He went to his GP three times, providing a stool sample which came back 'clear'. However, the awful symptoms persisted.

Anyway, he was so unwell on Thursday night that he went into hospital. Initially, they thought he had either Ulcertative Colitis or Chrohns Disease.

However, despite having IV fluids, anti-biotics and steroids his condition has worsened. In the middle of last night, Drs gave him a blood transfusion.

The hospital called at 9am this morning to tell my DH to get to hospital asap. When he got there they said he needed this surgery.

Naturally, our whole family is shattered by this. We have been told that he can have surgery in approximately six months time to connect the rectum to the large bowel. In the meantime, he will have a colostomy bag.

Can anyone help or offer any advice or experiences please? I am distraught and so scared.

Hi lenny,

I totally understand your worry but I can offer some reassurance. This is pretty much what happened to me (and quite like RunnerHasBeen from the sound of it). I am fit and well now.

Most people with colitis who have this surgery have suffered with it for years first. Unusually, like your stepson, for me it all happened within a month. I also ended up in hospital where I was treated with first steroids, then immunosuppressants, before there was no option but emergency surgery. So your stepson does probably have colitis, either than or Crohns - after the op they will be able to test tissues and tell you.

I was ill for some time, but recovered fully and live a happy normal life. I have also had the reconnection surgery, and have got good results from it. Feel free to PM me if you want to talk about it more.