Crohn's Disease Forum » Your Story » Hi folks i am new here

06-29-2013, 08:48 AM   #1
straker's Avatar
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Hi folks i am new here

I have suffered with spinal pain for 17 years now and I have had 3 operations the last one was ALIF that's where they cut your tum open and that's where the problem started the past I had UC but its been in remission for many years so much so I had forgotten about it .roll on this easter I started with agonising abdominal pain so much so I thought I was having an AAA .so after 3 trips to the hospital I was diagnosed with constipation !!!! I knew it wasn't constipation.3 months on and after many talks to my doctor asking him to refered me to a bowel specialist I have now been diagnosed with CD .what I carnt understand it why I need a white blood cell count done with nuclear markers and I need to spend 8 hours in hospital having 3 hourly MRI scans then I need a bone scan too .is this new ?? all I know is I am fed up I have no quality of life as it is with the intractable spinal pain I already take a massive amount of oxycontin and oxynorm {500mg } a day and I am still in pain ..and now I have to go through the hell of CD .does anyone know what this is ..mesenteric lymphadenopathy with thickening of the terminal ileum .any help and ..what next ?? I would be very grateful for any help advice
06-29-2013, 10:58 AM   #2
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Join Date: Feb 2010
Location: canada
sorry your going through all of this. Regarding the ALIF, is that when they fuse the bones together. My brother has severe anglosing spondylitits and would be in extreme pain if it were not for his prednisone and oxycontin. I know pred is not good long term but he really needs and had taken it for many years. Do you take prednisone also, it will help with both your spine and CD. But it is not good to take long term, but for my brother once he took and it helped, he cannot come of it now. Are you on any meds for the crohns. Sorry for not being of much help. I hope things get better for you.
06-29-2013, 11:38 AM   #3
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I have just been diagnosed and still going for tests {mri } full white blood count and bone scan so NO not on any meds as yet as for prednisolone I can't take it ,last time it put 5 stone on me .I do take the oxy for my back but I am still in pain the ALIF was a nightmare it was 18 months ago and before that I did not have any bowel problems a once every other day man !! no pain no blood ,I am also a vegetarian and have been all my life I don't drink and I was a good swimmer .so this Crohn's is a kick in the head its not fair .my health has gone downhill since the back problems and now this new bowel problems has aged me I feel about 90 I am 47 .I sleep for only an hour or 2 a night and have done for the last ten years due to pain { I have one of the best you can buy its a dormeo octaspring on a electrical adjustable base but I tend to live on my recliner .I have no social life no sex .life and I can't wear normal clothing due to nerve damage ,my legs feel like they are burning so I have to wear shorts all the time I can't even wear normal shoes I wear slippers or crocs ,thankfully I have an understanding wife she is a nurse and gives me plenty of room to do as I wish . no pressure she understands the hell I am going through .so I will be having the whole blood count {the nuclear marker under a gamma camera }in two weeks to see if the infection has spread to the lymph nodes .I am not sure whats next for me but I think the consultant has not finished with his test as yet ,I just hope its nothing more sinister he has suggested it may be ..I hope not ,,!!
06-29-2013, 12:40 PM   #4
Join Date: Jul 2012
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I have asked for those who maybe able to help to come and see your post. I am not qualified to answer your questions, but I am so sorry for what you are going through and will pray for you! Blessings! Teresa
06-29-2013, 02:56 PM   #5
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Location: Quebec

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Hi Straker,
I'm sorry that you are going through that series of events. I'm not too sure about your condition but from what I understand they are really trying to figure out where your inflammation/pain is originating. The WBC scan allows them to know where the wbc goes, thanks to the marker they add, and that allows the medical team to determine the source of infection or inflammation. If you were to have infection in your bone, related or not to your surgery, that would allow them to see it for instance. It would also allow to see if you have abdominal abscesses (which is a possibility with crohn), infection in general and tumors can be seen that way to. So it is a useful test when it comes to determine infection/inflammation.

You might know that pathologies like crohn, UC, spondylarthritis, Rhumatoid arthritis, psoriasis are similar diseases in some ways. It is not rare to see patient that have more than one of these diseases. I say more than one but sometimes it is not necessarily seen as two different diseases, but more as a "symptoms" associated to the "main" disease. Just as you possibly saw that we have a extra intestinal manifestation (EIM) section for eyes issues, arthritis, etc. etc. Tracing a line between diseases seem to be a pretty difficult task for them.

When it comes to "mesenteric lymphadenopathy with thickening of the terminal ileum". This, on its own, can be a few thing. It could totally be something seen in a report that refers to a patient with CD but it could also mean else. The "mesenteric lymphadenopathy" can be indicator of inflammation, infection, malignancy. It is commonly seen in CD but is not exclusive to it. It is seen in many conditions. The thickening of terminal ileum is very frequent in CD. So pretty much, it seems to me that the team is working into making sure it is actually CD and not anything else.

From what I read, you don't mention SPA diagnosis? Is your specialist a rheumatologist or have you ever seen one at some point? In all cases, if you have co-morbidities of crohn and SPA for instance and you never had specific treatment such as methotrexate or anti-tnf agent, it might be a possibility that these would be highly beneficial for you and could bring considerable change in your life quality. I'm saying this but at the same time, if you have been through surgery and all for your back, I am hoping that your medical team would have figure this out already...
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
06-29-2013, 04:11 PM   #6
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Join Date: May 2010
Location: New South Wales, Australia
Hi Straker and

I am so very sorry to hear of all you going through.

I totally agree with all PsychoJane has said. The tests they now want you have aren't new and are all designed to see if you do indeed have CD. The MRI is required because there is no other way to see the small bowel other than with some sort of imaging.

Unfortunately is not uncommon to receive a diagnosis of UC only to have it changed to CD further down the track.

Has IBD ever been suggested as a reason for your spinal pain, or at least part of the problem?
The axial arthropathies associated with IBD run independently of intestinal inflammation. So for all those years that you were free of bowel symptoms the Extra Intestinal inflammation of the spine can be running its own course. Here is an article regarding IBD and axial arthropathies... will also find info the EIM forum and the Forum Wiki.

With clear cut diagnoses and at what extent the disease/s are at present with both your gut and your spine then appropriate treatment can be commenced. Treatment for both conditions use the same drugs.

Good luck with the tests and please let us know how you get on. I hope you get solid answers and then some lasting relief!

Dusty. xxx
Mum of 2 kids with Crohn's.
06-29-2013, 06:24 PM   #7
straker's Avatar
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thank you all for the lovely warm welcome .I am overwhelmed with it all at the moment I need time to sort my head out .its bad enough having intractable spinal pain from the 3 spinal operations .my sleep has been lousy for ten years due to pain my diet has been poor since the operation ..I don't know why .it just is .,I am tired all the time but I put that down to my back pain as it is very bad .my consultant tells me its one of the worst he has dealt with .to get CD for easter .some present !! .I need to get the test sorted out first and get a firm diagnosis ...then I will take it from there .my worst fear would be needing a ;;bag,, I could not cope with that ,I am obsessively clean and very private about bathroom procedures .the thought of taking even more drugs is bad too .I cant believe its happening to me .its just one thing after another ...the pain I get spreads from my rtansvers colon and small bowel to my back .baised to my right hand side \{this is where I get my spinal pain from } when that kicks in its too much to stand .I carnt even lay on my recliner I carnt drive I walk with a stoop to try to take the strain of the bowel pain but that aggravates the spine .I don't need any more health problems ,I am shocked at how fast it all came on .within 72 hours from my tm feels off to maga pain and hospital to be wrongly diagnosed with constipation .!! .anyway I am under a colorectal consultant at the moment but as long as its not cancer he is placing me with the gastro medical team for them to manage the problem ..that's life !!

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