All comments gratefully received

Hello All

I am so grateful to have found a great forum with such a good spirit of caring and sharing.

I am 40 years old and have just been diagnosed with Crohn's in the last 2 weeks after a horrible couple of months in my local hospital. I live on a tiny Island where the only hospital has very little experience of Crohn's at all. I still have some scepticism about the diagnosis but they found ulceration and inflammation in the terminal illeum so I guess it is probably correct.

It all really start in early July (though I had been tired and had begun to develop food allergies a few months earlier). Anyway, I had been doing some very stressful Bar exams and collapsed with pain in my tummy on 6th July, followed with three weeks of the big D. I figured I had a bug but completely lost my appetite and wasnt picking up, then overnight my symptoms got 10 x worse. I lost the ability to stand and walk and kept lying on the floor. I also could not stop passing water - 40+ times a day. The doctor came out and there appeared to be reduced motor power in my legs so I was admitted for the first time. Unfortunately my first doctor was a nightmare, decided I was anxious and gave me antibiotics and antidepressants and discharged me. Whilst I was in they made me eat as much food as I could manage and I began to realise that when I ate I felt worse.

At home things got worse and worse. I was in agony all day and couldnt sit up. My lower abdomen became so bloated that two livid stretch marks developed on either side and on the right my bowel has become visibly misshapen and looks as if I have an appendix scar. In the end I was readmitted, covered in rashes and hives. It was decided that I had had a virus and developed multiple food allergies. I was put on anti-histimines and rice and chicken to eat. I was then sent to a rehabilitation unit where I was taken off the diet and within 2 days I could not even stand. I was readmitted to hospital and finally had a gastroscopy,colonoscopy and barium swallow. By then my capilliaries had started to burst and have been told that this is due to lack of vitamin C.

Everytime I was eating anything I felt shivery inside, I would sneeze and itch immediately and then for the next few hours it felt like I was being poisoned. When I lay down my body and legs were shaking and in the night I was waking up in the early hours with a pulse up to 180 wanting to be sick. My vision was being affected and I could not tolerate noise. I had and still have severe pain in my hips and knees and down the outside of each foot. I also have shoulder pain and tightness in my upper arms. I also itch from the scalp to the face, legs, arms and soles of feet/palms.

Since diagnosis 2 weeks ago I have been on budesonide (sp?) - I believe this is a steroid which targets only your gut (?!) and I am on it for 12 weeks. I have also been on elemental drinks since then. I am back home since yesterday but still have very weak legs and can barely walk the length of my flat to the loo. I have mouth ulcers which wont shift and a disgusting white coating on my tongue which wont go. The itching (particularly bad in my nose) is subsiding a bit but still driving me mad. I also have very hard and unforgiving internal piles. I feel sick all the time. As well as the steroids I am taking Motilium to make things move along a bit, probiotic capsules and the anti-histimines. I know they are going to try and get me to start re-introducing food next week and I am very concerned as this is a learning process for my doctors and that does not feel good.

The other thing they cannot explain is why I have serious bloating in my stomach although it looks clear from Crohn's. I have serious indigestion all the time and even when I drink the elementals. This is just getting worse. I also still have no appetite after 14 weeks. They have told me they dont know whether it will come back ...

Whenever I have told the doctors my symptoms they have told me I am a very odd case and look at me as if I am crazy. Any comments, suggestions, comfort that might be offered would be most welcome. Well this is my tale (phew).

All the best, Trieste

Hi Trieste, welcome to the forum. I'm also on Entocort (budesonide), and you're correct - it targets a specific area of the intestine, the end of the small intestine and the start of the large intestine. If you have disease elsewhere, like in your stomach (it sounds like this is a possibility!), it won't work on that, so you may want to ask your doctor if he would consider adding or switching you to a steroid that affects everything, such as prednisone. Entocort is also pretty mild compared to something like prednisone, so I'm surprised they put you on that given your story and the apparent severity of your symptoms! You may want to consider switching doctors and finding someone who deals specifically with IBD or Crohn's - from what you described, you went through a lot without getting any relief and you deserve a better quality of care than that! Good luck, and again, welcome.

:welcome: Trieste! Whew, you have been through some of the symptoms most of us get but you have some added things not so common. Cat is right Entocort does work in mild cases but I think you could have gone beyond that. Stress isnt a cause but it does aggrivate the gut. You are going through the Bar exams,,, doesnt get much stressful than that. I can tell you must be living in the UK, I have been here long enough to pick up on the countries most people are from. If not it does help us to know what country you are in because there are people from all over the world here and they can pop in and get you help in your area. Experience is worth alot on the forum. Some questions to ask your Gi, is since the meds are not controlling your pain would Prednisone (short term and fast taper) help you and talk about the biologics , Remicade, Humira and Cimzia, not in that order, most start on Humira because it is milder (in my opinion) and is a Human protein, Remicade is mouse protein. You shouldnt be suffering, hopefully you can get that under control. Ask us questions or just join in and vent or laugh, because a laugh is most welcome!

Glad you found us, let us know what Country you are from!

Trieste, I too recommend you go and find new doctors that specialize in this disease. Sounds like you are a very serious case and need the best in any country. I have dealt with crohns disease for 40 years. It seems that now doctors are changing their minds on how to start on new patients. Now doctors that have studied and dealt with this disease are starting patients out with Remicade, Humira, or Cimzia, (I have the Cimzia in my refrigerator as we speak and will probably have my first injection this week--will let you know how that goes). I have never used Humira or Remicade. But each doctor is different. All I can say is--there will be better days for you ahead--but get a good doctor you can understand and one that will listen to you. I have had several and fired a few. I know that it is sometimes very hard to find good doctors. Maybe some one can direct you to one they have had good results with in your area Wish I had this forum 40 years ago. It is sad that no more research has been done on crohns. But if you have it--you know the need for changes. Bless you and good luck.

Hi Trieste and :welcome:

I'm glad you found your way here. So you are from Trieste??

Whoa you have certainly been through and continue to go through so much! By the sounds of things you really need to get yourself off the island and to a Gi who specialises in IBD. They may well be right about you being an odd case but much of what you describe also sounds like a major Crohns flare. Are you taking any supplements like B12, Vit C, Iron, those sort of things?

Another thing I would have checked out is the Motilium, it has some side effects like itchy rashes and increased pulse rate.

Good luck and please keep us posted!

Take care,
Dusty

Welcome Trieste!! I'm sure they have done blood tests. Have they mentioned liver enzymes? We were told that uncontrollable itching is an early sign of liver malfunction.
What have the bloods shown as far as vitamin levels etc.?

Were you in law school on the island? If so, are you finished with the Bars and can leave now? Telling you you are an odd case isn't very helpful!!

Hi Mark

Thanks for reply. Yes thats what I understood to be the case too regarding the itching. My doctor here insists I have mild Crohn's and stopped checking my bloods several weeks ago despite the fact that early tests showed some mild liver disfunction and the itching has got worse since then.

I work here in Jersey (small Island off the coast of France in the English Channel in case you don't know it) and unlike the English Bar (which I took ten years ago) you take the Jersey Bar whilst you are working. I can get off the Island as I cannot return to work at present (although at the moment I cannot really walk so travel is an issue). There is a UK specialist at University College Hospital in London who may be willing to see me so fingers crossed he may be more help.

All the best, Caroline (Trieste is my user name - after my grandma).

Hi to Cat, Pen, DustyKat, Mark and Don

Thanks for all your helpful advice. I am from Jersey in the Channel Islands - tiny Island 5 miles by 9 with just a local general hospital. Like you guys suggest I am looking for alternative doctors in the UK mainland who might be able to help me.

The docs here insist my case is mild despite the symptoms suffered, hence the treatment I am on. There was no sign of the Crohn's in the colon and only the terminal illeum which didnt look too severe. However, there is no facility here to look at the rest of the small bowel, I would have to go to the UK to have that done (although the barium swallow shows no strictures or major abcesses). I understand there is a professor at University College Hospital in London who is a Crohn's expert but has a particular interest in some of the more unusual symptoms of Crohn's - he may be the chap to help.

As to vitamins, there are loads in the elemental drinks but I am not on supplements other than the probiotics. I also see that lots of people are taking B12 which hasnt been recommended to me.

Regarding Trieste - my real name is Caroline - I use the name as it was my grandmothers and it is special to me but also unusual. She was born at a time when her eldest brother was stationed at Trieste during WW1.

Its been really helpful to have all your views. This has been a pretty lonely and desperate experience til now. I am sure the shock will wear off soon and I will start to cope a little better. You are right that venting and laughing really does help!

That's good news Caroline!! Keep us updated!!

Hi Caroline (Caz from Facebook?)

and welcome, so glad you joined us.
You have ALL the extra intestinal manifestations that Crohnies may/can get, and then some!
I really hope you can get over to London and see a specialist who can finally give you a diagnosis and appropriate meds, Budesonide obviously isn't the right med, like Cat explained.
stick with us Caroline for support and friendship, always someone here to help
lotsa luv
Joan xxx