Still No Diagnosis, been referred to specialist in London

[Theresa]

Well I have been to see my consultant today, I am really frustrated! and still do not have a firm diagnosis, I feel like I am banging my head against a brick wall!

I have always suffered with my bowels most of my adult life but just put up with it!. In June this year I began having constant explosive D and a really bad pain in my lower right side. I ended up at the hospital and they suspected appendix i was opened up and they took my appendix even though it was ok. I also had a cysts removed from my bowel and the surgeon said that my bowel showed signs of IBD and asked me to have a small bowel follow through.

I had this and this was clear although my transit was extremley fast I had not finished having my xrays and I had already had D. I then saw my consultant again as I had continued to have D every day upto 10-20 times a day was fatigued and losing weight. I have lost just over a stone, I am quite a big girl so liked this part of it. I had had some rectal bleeding and kept having accidents and the doctor requested a colonoscopy. He also examined me rectally and said that my muscels in my anus are very weak. I had the colonoscopy on 4th November. During the colonoscopy the doctor showed me inflamation in the caecum and rectum this was mild and not too severe. I have continued to have a lot of pain in my right side which paracetamol or codine does not help with. I have take immodium to try and stop the D but this does not really work.

I went to see the consultant today for the results of the biopsies and colonoscopy, the doctor said that the inflamation was mild and the biopsies where all clear. He examined me and when he felt my right and left side this was very painful. He said he can not feel any massess which is great. He said that he is going to refer me to St. Thomas's hospital in london to look into my feacal incointince and urgency, to continue to take the immodium and to continue to take over the counter pain meds. I know that he has referred me to the London Hospital but I think this is just about the urgency and anal muscels, what about the D and public accidents and the PAIN this has not gone away! I am not asking to have Crohns I just want some answers to why I have having constant D with pain every day and its not going away!

I am sure that I am not the only one that feels so frustrated, I know that there are people on here who also have not been diagnosed, but I know something is wrong and I need to get it sorted, to improve my quality of life!

 

[kskitt]

but I think this is just about the urgency and anal muscels

hmmm this is my opinion, that maybe if they could sort of the anal muscles and the urgency then maybe this could help the diareah?? Im still having terrible D and im so fed up with it, and i was taking immodium and i found that it didnt do any good

 

[Theresa]

Thanks Kskitt, yeah i think the referral is for the anal muscels and urgency, but I suppose at least its something! I have been thinking about my symptoms today and forgot to add that I have an oily patch on top of the water in the toilet when I have D and also sometimes when I pee. I also have pain and D shortly after eating! I was taking to a friend this evening and she spoke to me about Habba syndrome, but I am not sure to look into this as I do have pain and I do not think you have pain with this, I would be interested to know, my D is expolsive and does is bright yellow!

Sorry to hear you are not too good too!

 

[beth]

Well at St Thomas' they should sort you out right, being a big london hospital!

 

[SumCiA]

I'm sure St Thomas' is a great Hospital but if your travelling to London then you might want to ask your consultant about St Marks Hospital. It is a specialist referral centre for intestinal and colorectal disorders. It is where i was operated on and am currently under treatment.

I've been told on many occations by various proffesionals and sufferers that there's probably no better place in the world for intestinal disorder treatment.

 

[Theresa]

Hi Freddo, I was told that they were going to write to St. Thomas's I was not really given any choice, I am fairly new to all this hospital appointments and referrals. I am just glad that its appears that someone is listening to me, I am not sure what the appointment is for and will have to wait until the letter comes. I think its to do with the constant D and the anal muscels rather than the inflamation and pain, but at least its to see someone who may listen to me! I am finding it all quite frustrating!

I have a food intolerance test on Monday and am hoping that this may also give me some answers! How long have you been poorly and do you have a diagnosis, I would be interested to hear from you.

 

[SumCiA]

Hi Theresa. I had a right hemi-colectomy in March of 2008 that removed some of my small and large intestine. I was diagnosed with crohns in the February of 2008 but had suffered will it for the best part of 4 years previous to this without diagnosis. On the on set of light symptoms my GP initially said he thought it was IBS. So for many years i just suffered extreme symptoms believing his diagnosis. 4 years later and 4 stones lighter i was admitted to A&E with a perianal abcess that was operated on and subsequently led to my seeing a specialist at St Marks and diagnosed with severe Crohns (within a week) that needed surgical intervention pretty quickly.

A year and a half later it has returned with a colonoscopy showing light inflammation in the terminal ileum. I don't have many of the symptoms that i had back then but my consultant is trying to slow the crohns with medication.

There must be a reason why your Docs are hesitant to diagnose IBD (crohns etc) but it must be high on the list of possibles. I suspect that whoever your initial consultancy is with at St Thomas' you will eventually end up with the right diagnosis.

Good luck.

 

[Theresa]

Hi Freddo, thank you for your post you have really been through the mill, I hope that you sort out your Meds with you consultant at St. Marks I will keep you posted when i recieve a letter from St. Thomas's, I also had a food tolerance test yesterday and have found out I am intolerant to Dairy, Wheat, Oranges, peppers, orange Cola, tomatoe, strawberry, and most spirits and wine, and white grapes oh and cucumber! have you ever been tested for things that you are intolerant to. I have to cut out Dairy straight away and them gradually elinimate the rest from my diet, this is going to be fun but hopefully may stop the D and pain.