• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

In need of help please

in need of help please

after my last and 5th baby was born in 2008 i became quite ill,after mountains of tests and 2yrs later i was diagnosed as having crohns and some diverticular diseas in the large bowel.I have spent 2 yrs virtually in bed not being able to move far,my intestines swollen that badly i cry daily.I was a fitness fanatic for yrs and im now a cabbage.im 43 nearly 44 and i have no life,I was told at the hospital if i can manage without tablets i should, as some of the crohns tablets cause bone cancers ,i live on co-codomol nothing more and enemas.I have become so depressed of late,today i cant even walk in the kitchen as im in so much pain,i went to the doctors last week and they said there isnt much they can do,i have to live with it.I need your help please,i cant live like this any more.
 
Do you have any other symptoms other than pain?

What exactly do the scopes show as far as inflammation? Where is it at specifically?

Dan
 

David

Co-Founder
Staff member
The doctors you have seen are idiots.

DEMAND they send you to gastroenterologist who specializes in Crohn's Disease. You do NOT have to be living like you have and you DESERVE quality care. Fight for your care. It's sad that you sometimes have to, but once you get to a good doctor, they can make all the difference in the world for you.

Please keep us updated as to your progress and we're here for you anytime!
 
I absolutely agree with David!! Nobody needs to live like that. Demand better care and don't take no for an answer. There are good Dr's out there, unfortunately you sometimes have to look hard for them.
 

Crohn's 35

Inactive Account
The nerve of some doctors...trust me they are here in Canada too. Lots of people here from the UK to help you and maybe recommend a better Gi.

:welcome: Ginny, we are here for you.
 
Hi Ginny. So sorry to hear about this and I agree with the others: no way should you have to live like this. When you say you went to the doctors last week, was it to a GP? I think most of us here in the UK need to be referred to gastro specialist by a GP?
If you are getting nowhere with the current one, I would change if you can. Or if anyone here could recommend a good hospital in your area, it might be worth going to A & E as you could be referred from there.
 

DustyKat

Super Moderator
Hi Ginny and :welcome:

I'm so sorry to hear of all you are going through...:(

David is right hun, your doctors are idiots and you need to get away from them ASAP. Aside from the fact that you can't continue to live the way you are now but by not giving you appropriate treatment your bowel continues to suffer damage.

Yes, many of the medications used to treat IBD can have serious side effects but they are not the norm and many people can and do find a successful treatment regime that allows to them to get on with life with no side effects. I don't like the fact that my children take Azathioprine but the alternatives of no medication are just as severe as the side effects of the Imuran, in my view it is the lesser of two evils.

I imagine that they neglected to inform you that compound analgesics come with their own serious side effects if taken daily over an extended period of time, that being renal failure. I hasten to add that I'm sure you are fine, I am just pointing out that it is wrong of them to focus on one aspect of your health and treatment without being open and honest about the alternatives.

Please seek a second opinion now with a suitably qualified gastroenterologist, it is the very least you deserve.

Good luck and keep us posted!

Dusty. xxx
 
answer to a few questions above,i have some inflamation in the small bowel and alot in the large bowel.Yes i do feel ill all of the time,i have constant headaches, fever,my joints ache so much,my intestines burn that much i cant bend over,i have heartburn all of the time and generally i feel i have got flu constantly.My gp doesnt give a dam he said i should stop moaning and the gastro i saw said to change my diet and take pepto bismal its a good alternative to drugs.but my diet is very healthy i dont eat fried or junk food,i like bran fruit and veg and i dont eat meat.I have been in agony all night.all my docs keep saying is that its not life threatening and at least all my biopsies have come back clear ive no cancer,so get on with life.
 
So they've actually found inflammation and are doing nothing about it?? Unreal. But unfortunately, not uncommon. Like Dusty says, go for a second opinion. Change your GP anyway. You know your body and that something is very wrong and I would have no faith in doctors that have spoken to you this way.
 
hi,
this crohns case has been going on for 37 years and frankly i get a similar response from my complacent gastro bloke. i been telling my gp and specialists that i got a new area and have had for 9 months now. its my large intestine, transverse colon. will they do anything? no. i'm in pain too. i know how it is, i did try humira but had bad reactions and i do have a liquid diet, still suffering though.

good luck with finding a new doc or gastro.
 

Trysha

Moderator
Staff member
Hello Ginny,
It is sad to hear such a story as yours especially when there are good gastroenterologists in England.
Your symptoms need looking into by a specialist in crohn's.
Are you near enought to Leeds, they have excellent GI specialist at the University,
You also need to find a GP better suited to your needs, take a look around.
The codeine you are taking could be contibuting to some of your discomfort since
it slows down the bowel a little too much at times.
Sometimes if you can manage it a little walk can be helpful,even just getting around indoors; also warmth from heating pads or hot water bottles I have found helps to relieve some of the pains.
It is inconceivable that you are suffering without the appropriate medical help;perhaps you could get in touch with a British Crohn's society to help with choice of doctors and GI specialists in your surrounding area.
You should not remain in silence about your situation.
This forum will be of great support to you and is loaded with information as well as with others sympathetic to your feelings.Please stay in touch and let us know how you get on.
Hugs and best wishes
Trysha
 
To answer bergy,the worst for me was that i had diarrhea so badly for 8 weeks not long ago,just yellow liquid,i lost 2 st 7lbs in that 8 weeks,ive since gained some back,nothing stopped it.The pain has been so bad at times i actually thought i was dying,from my stomach where im told there is slight inflamation(i had biopsies of my stomach done recently) to under my ribs,even near my liver aches and no i dont drink im a t,total,right down to my right side appendix to the left bottom colon,i ache right through to my back.i have constant mouth ulcers and sore throats too.I am just trying to get through each day slowly.
 

David

Co-Founder
Staff member
i have constant mouth ulcers
This is often a sign of vitamin or mineral deficiency. Many here have had great luck taking a complex B vitamin for mouth ulcers. When you find your new doctor(s) request that they test you for a variety of vitamin and mineral deficiencies from vitamin B12 to Magnesium. Vitamin and mineral deficiencies are very common in people with Crohn's Disease and it is vitally important to stay on top of it.
 
In your neck of the woods, you are almost certainly deficient in vitamin D, which does regulate the immune system.

I would have that tested for sure. I am not sure what they consider normal in your country, but the experts on the subject usually recommend higher than normal levels.

You do need another specialist. I use specialists and treat myself unless they have a better option. I suspect you might have H-Pylori, or a Mycoplasma infection given the pain level you are describing, and the areas it is presenting itself.

I would try a prescription for azithromyacin if your doctor will prescribe it.

Dan
 
thanks dan,i have just had the h pylori come back negative.i will get back to the docs tommorrow many thanks dan.vitamin d lack of most likely over here.
 
Omg I want to cry for you!! That is insane and with children IMPOSSIBLE to live through!!! Fight for your right for better care! Insist with your GP to get you a new gastro. I can't believe they would let you live this way. There are medications though not always with fun side effects but they can work. There is no reason you should be suffering. Your quality of life though it is worsened by cd doesn't need to be diminished. Prednisone can help with the worst of your inflammation and once they have it under control your bowel movements should become more normal. If that doesn't help you need to talk to you about humira or remicade as an alternative. I was in your position last year and i had to postpone prednisone for 3 weeks in order to get medical insurance in case it didn't work and I needed more costly meds. I know how difficult this stage can be. But if your dr aren't willing to help control it you need to seek new advice. Living like that is absurd.
 
Thankyou stacey above,im fortunate i have a good hubby and older daughters and they have helped with the little one while ive been ill even though my hubby works shifts.The nhs here in the uk is free but thats the problem,cut backs mean that doctors dont want to give you any expensive meds now.I do recall my sister was on prednisone for crohns but she lives hundreds of miles away and gets better treatment down in the south.All i can say this morning is that when i woke up i feel like i have been kicked in the intestines,they ache so much.I just get by each day.
 
I know the feeling. Try lying down to your right with a pillow wedged in your side or soaking in a hot bath. Both those things should help. All I do when I'm at my worst is sit down and lean to my right since it relieves the pressure from my colon on my left. You need to rest bc moving around will encourage bowel movements that are not normal right now and can only further agrevate you so just lie down. It will pass and taking time to take care of yourself will benefit you down the road. Soon you'll be doing your normal stuff again. Also try and drink peppermint tea, it can be soothing and help with the heartburn. It's good that you have your family to help I hope you can speak with your sister and she can maybe pass on some advice aswell.
 
i havnt unfortunately seen my sister in 5 yrs since my father died otherwise i would have loved to have gained info,can i ask stacey scarlete,does it sometimes effect your whole body,there are days when i feel this has taken me over,my lungs occasionally hurt(i dont smoke) my liver hurts even my eyes some days and then bang its all gone,the doc thinks im mad but ive never been a winger or ill,i used to run the marathons and i loved the pain of it all,but this i cant stand it
 
That's tough bc you guys might be able to bond over this. Yes I get lots of body aches. If you have Crohns your body is not absorbing nutrients as it should and your bowels are full and inflamed which means they are pushing up against other organs. I had a severe pain near my pancreas all week last week. I was worried bc the new meds I'm on can effect it and then I had my first bowel movement in five days and the pain went away. Also last year I was getting constant aches in my back bc I had done very severe kidney infections. Also because my intestines were inflamed and my kidneys were too the full intestines made it all worse. Nothing feels right. I have an ache in my whole left side from my hip to my toes. It only comes with a flare when I'm well I rarely feel the pain. I had it under control this summer with prednisone for the first time in 3 years and I felt normal so I can tell you that it isn't diet or anything else that will stop it from coming on. When your well you eat what you like and feel fine when your not your not
 
Top