Any advice would be great!

[Aims]

:sign0085:Hi, I need to vent and seek advice from the people I know who will know what I am on about... (sorry this is long)

Nine years ago I was very unwell, terrible diarrhea, stomach pains, low grade fever. I was travelling an hour to work and would fine it very hard to get there and deal with the pain as I was driving. I went to my GP who referred me to a gastroenterologist. I went to him and he did an endoscopy and colonoscopy. He didnt find anything and ushed me out of his rooms with the belief that I had irritable bowel.

My bosses sister had Crohns and suggested I go to see her Dr. He was excellent and did another Colonoscopy, but found nothing. He said I believe you have Crohns disease but it is very tricky to find. I also remember him doing another test where dye was injected in to me, all showed up nothing. I was about to get married, so he suggested that I go and do that and come back to him after. In the meantime my GP suggested I go off of Wheat and Dairy which I did and it seem to relieve some of the pain.

For the past 8 years I have had on and off constrant pain, getting lots of blood test done and getting no results. It effects me on a daily basis. I have had two children during that time too, which made me put off another Gastro Dr.

My GP sent me to an immunologist (last year) as he thought I had food allergies. This doctor proceed to check Thyroid allergies etc. Finally he did a Hydra breath Test which showed positive for SIBO. He wasnt satisfied with that and wanted me to go to another Gastro Dr. I was so over it and thought, not again I cant do it.

In December and January I had toncilitis and couldnt be rid of it. Then in February I started bleeding from my bowel and have mucas (sorry for the details). I would also have blood clots etc. I finally went to the Dr after 4 weeks of this (as I started to throw up and choke on my food) and thought I would just mention it. He suggested I go to another Gastro Dr.

I finally went in to the Gastro Dr and he did a sigmoidoscopy and said yes you have IBD. I then had an Endoscopy and Colonoscopy. This test showed that I had GERD and Inflamation from my rectum to sigmoid. The biopsy showed ulcerated colits. I asked this Dr why then do I have so much Diarrhea and he said 'well you probably have IBS' - NOOOOO!!!!

My frustration is that when these tests were done 8 years ago none of this showed up and as it stands today is pretty visable. Am I right in saying UC runs in a line and does not come and go in patches, so therefore UC should of showed on the colonoscopy. When I was suffering years ago the uc would of showed up in my large bowel. I believe with Crohns it is patchy and shows in the small bowel also (which I have no tests done on). Also when looking at other suffers it seems that GERD and Crohns go hand in hand for some cases but not with UC????

I am currently suffering from stabbing pains in my left thigh and dreadful pains in the arches of my feet. I went to my dr last week for blood test as thought it may be from the medication I am now on for the GERD. The blood test showed nothing out of the ordinary and my GP has sent me back to the orginal Crohns specialist I saw 8 years ago. I cant get in to see him until the 1st May and in the meantime I have cut Gluten from my diet as well as anything acidy, alcohol and coffee :hallo3:

Occasionally I throw up but I think this is due to the GERD, I always have pain whether I eat or not and still bleeding, hot sweats, My paid in lower on the left and right side and cramps under my ribs. When something doesnt agree with my I will be on the toilet constantly with Diarrhea and when I dont have Diarrhea I am constipated. When it is that time of the month, my pains are so severe, feels like my ovaries are on fire (sorry fella readers). Also I have researched the people with Crohns also would show up posetive for the Hydra breath test I had.... dont know, I believe I have had Crohns all along, what do you think????

 

[Rebecca85]

It is possible then 8 years ago the UC was not advanced enough to visibly show on colonoscopy. You do not say if any biopsies were taken back then- sometimes things will show on biopsy that aren't visible to the naked eye.

One of the symptoms of UC is diarrhoea, so I don't know why the doctor told you it's probably IBS giving you diarrhoea, after you got a UC diagnosis!

As for GERD, yes it is more common in Crohn's but it doesn't mean you can't get it with UC (could be a coincidence). Your mention of inflammation from sigmoid to rectum is classic UC, so you seem to have features of both.

I really don't think it matters too much whether you have UC or Crohn's since the treatments are so similar, they both fall under the umbrella of IBD. So unless surgery is mentioned, I wouldn't worry about the details but concentrate on getting some treatment and feeling better!

As for pains around the time of the month- have you also been checked by a gynaecologist? Because often our periods makes things flare but it seems to increase bowel problems rather than having ovary pains.

 

[Slim Johnson]

I recently lost my sigmoid colon, and ileum, and ileocecal valve to CD. My disease was missed, and misdiagnosed as IBS for years.. So anything is possible, however I would say CD over UC.

Also, vomiting could be caused by an obstruction. If you are vomiting for days at a time, you could have problems.

I would suggest finding an intelligent GI. One that really knows CD, not just what they have read in some journal, but one with patients, and smarts.

 

[Aims]

Thanks for the advice, it will be interesting to see what the specialist says.

Slim sorry to hear about your misdiagnosis! It seems to be a hard disea to diagnois, its a shame so many of us have to suffer for so long! I am seeing a specialist recommended by a friend who sees him with her CD, so hopefully he can help.

I will let you know how I go :thumleft:

 

[Heather_D]

Good Luck Aims! I would agree with others that it does sound more like CD with the GERD, vomiting, SIBO, etc… I have also had surgery to remove my ileum, appendix, part of my small and large intestine and a small portion of my rectum. I was lucky and my diagnosis was correct originally, although I lived with it for several years before I said enough to my PCP for her to recommend me to a GI. My original issues were blood with my stool and being so tired I had trouble getting out of bed (I was severely anemic). More recently, I suffered from horrible pain and vomiting before my surgery; so hopefully they can figure this out soon and be able to reduce the inflammation with medication rather than having to have surgery.

My dad suffers from UC. He suffered from horrible D before he was diagnosed, but he's done really well for the last 10 years or so on his meds (he's done much better than I have).

Good luck!

 

[Aims]

Thanks Heather, you poor thing you have been through so much! I hope you are recovering well from the surgery. Hopefully they will work out what happened before the surgery :ywow:

I do struggle with nausea too and getting out of bed is a struggle when I feel like that! I have two small boys and run my own business, so no time to rest, though lately I do take time to rest if possible.

Good luck with your recovery, thank you very much for your thought :rosette1: