Could it be IBD?

[niccj]

Hi. I have suffered with severe constipation for years with terrible abdo pain. In Feb this year I had my gallbladder out because of a large stone and for approx 8 weeks after I had constant diarrhea. I was admitted to hospital beginning of May this year because my joints all swelled up to the point my toes didnt touch the floor and I had to have my wedding ring cut off. I couldn't walk or use hands etc.Dr's initially thought it was an auto immune disease such as lupus but the ANA test came back negative but my stool sample came back with a high reading and so I was sent for OGD and flex sigmoidoscopy. The OGD showed gastritis and active bleeding in the stomach and the siggy showed '?? cobblestone mucosa and the nurse doing the scope said it was crohns but put a diagnosis of colitis on the results letter the ulceration was quite extensive through the descending colon. I had biopsies taken from both scopes which came back normal. I was then sent for a colonoscopy (yesterday) and the Dr said there is now no ulceration at all in the large bowel or in the terminal ilieum. Now I'm waiting for an MRI of small bowel. Would it be possible that the stool test and the ulceration on siggy were caused because of the swelling (which I still don't know the cause of) or will this only happen with IBD?
it sounds silly but I was finally glad to be getting a diagnosis for all my problems even if it was IBD because I feel that people think I'm making up the pain and tiredness and vomiting etc but now i'm not sure whats going on. Grateful for any help.

 

[nogutsnoglory]

Regular body swelling would not cause ulceration in the digestive system. If your joint swelling was due to IBD then it's possible you had an ulceration that cleared up. Sorry you need to go through all these tests but I hope you will get a diagnosis of some kind so you can begin the appropriate treatment and stop suffering.

 

[niccj]

Thanks for replying so fast. So could it be IBD that is now in remission? The biopsies were clear and the colonoscopy too. If I do another stool sample would it come back high again if the inflammation has gone or will it be normal now all Diarrhea and joint inflammation has calmed down? I'm still in alot of pain in my stomach (high up between breast bone) and always bloated too. I had a steroid injection the day before doing the stool sample to calm down the joint swelling so could this have made the reading high? Sorry for all the questions I'm just worried that they will tell me there's nothing wrong and then be back to square one and go through all this again if it gets bad again.

 

[723crossroads]

It may or may not be normal. Only your body determines that. It does sound like a period of remission to me. Are you taking supplements to help? Please checkout our supplements thread on main forum page? It can help you stay in remission sometimes and ease some of the pain.You may still have an IBD I'm sorry to say and be in a state of temporaray remission.Enjoy it and let's hope for the best. Sorry you had to go through all that! let us know how you are?:ghugS, I don't know if the steroid injection could make it high, sorry.

 

[nogutsnoglory]

Unfortunately it's something we can't answer because we aren't medical professionals and don't know your medical history. You may be in remission or its possible that ulceration cleared up. Unfortunately it can be hard to get a formal diagnosis but keep on top of your symptoms and hopefully doctors will figure out what's causing this.

 

[niccj]

Thanks for your replies. I now have a long wait until I see my consultant which is a pain but hopefully I won't have any problems between now and then. I am now also having difficulty swallowing, it feels like theres a lump going down into my stomach??!! I'm thinking this could just be anxiety?

 

[nogutsnoglory]

I suffer from anxiety and my rule is if I think it might be anxiety, it probably just is. Try to relax and focus on getting better and not on the symptoms if possible.

 

[niccj]

Pain got loads worse. Started when my swallow hit what I assume is my stomach and then a sharp griping pain went under my breast across the right ribs and into my back. Only able to take shallow breaths. I've had some liquid morphine and now have a water bottle on my side. I know the chest pains aren't related to my heart (or I hope they're not!!) pains eased off but still niggling. I had sone ice cream earlier because I haven't eaten since a piece of toast on Thursday - had to follow colonoscopy prep diet until Saturday and have been in pain with chest whenever I try eating and then am vomiting it back again. Really wish I had the ability to go to a&e but I have work and have had too much time off already. Sorry for moaning but I don't think my husband understands exactly how much pain I'm in and is fed up of there always being something wrong with me. Could this be linked to IBD??

 

[723crossroads]

Pain got loads worse. Started when my swallow hit what I assume is my stomach and then a sharp griping pain went under my breast across the right ribs and into my back. Only able to take shallow breaths. I've had some liquid morphine and now have a water bottle on my side. I know the chest pains aren't related to my heart (or I hope they're not!!) pains eased off but still niggling. I had sone ice cream earlier because I haven't eaten since a piece of toast on Thursday - had to follow colonoscopy prep diet until Saturday and have been in pain with chest whenever I try eating and then am vomiting it back again. Really wish I had the ability to go to a&e but I have work and have had too much time off already. Sorry for moaning but I don't think my husband understands exactly how much pain I'm in and is fed up of there always being something wrong with me. Could this be linked to IBD??[/QUOTE

I would have guessed gall bladder, but you already had yours out. I can't imagine it being anything else but IBD. Sorry your husband isn't being very helpful. Wished he could feel it for just a minute, don't you? Been there!!! Hope you get some answers soon love!:ghug:

 

[niccj]

Thanks for replying. Hubby has been really good with me but I'm practically always hurting and sharing the fact with him! Maybe I should try to keep it to myself a bit. I hope the mri isn't going to be too long. I'm going on holiday in 2 weeks and am so worried that something will happen when I'm there that I can't look forward to it.

 

[723crossroads]

I know, I feel that way too. But he shares his horrible backpain with me daily too. He has a herniated disc in his neck and has to do alot of bending and lifting and it's not helping his back at all.His lower back is bad too, bulging discs. So we whine together. But it is so nice having someone who cares. I do try so hard not to whine everyday and complain, but it is so hard not to. I am used to being in pain, I have been for yrs. But this is different and having your energy zapped is like something i can't describe to people. I was always so full of energy and able to go all day into the night. Lived on five hours of sleep. Now I need a nap just about everyday and sleep a good 7-8-9 hrs. at night. I never feel like I used to. The backpain stops you from even cooking, because it is so hard to stand in one spot. Are you like that too?

 

[niccj]

Update. Finally had results from capsule endoscopy from end of February! GP gave me the results of "test not fully completed as capsule didn't reach terminal ileum but no sign of crohns as far as the pill went". I was a bit worried about this as I asked my consultant in March if it could be stuck because of severe left sided pain an he fobbed me off. When having the test they thought it had stopped moving so sent me for a walk and when I returned they said it was in the colon??? Just received letter from GI which just says good news the rest was normal no sign of crohns! Why is he not telling me that the test didn't complete? Should I assume everything is ok or push for further tests? Feel like people think I'm making up everything now even though I have just recovered from another flare of throat ulcers and severe diarrhoea and pains. Can the pill still be stuck and only cause so much pain or would I be in agony, vomiting etc? Also my first rest sigmoidoscopy showed ulceration, is there anything else that could have caused this? It's really getting me down to the point that I am considering seeking legal advice to get someone to thoroughly go through everything an see what could be done. I have requested the pill cam results from my GP so I can see exactly what is being said but I have to call back later to see if they will give it to me. X

 

[niccj]

MRI was NAD but couldn't use the dye as my veins disappeared when they seen the needle!!

 

[Patricia56]

Try keeping a diary of your symptoms to show your doctor. Crohn's can come and go so it's possible that's what is happening. I wouldn't have expected normal biopsies if you had cobblestoning however. And I would have expected residual scar tissue too.

You could ask for a referral to rheumatology because you can have lupus and other autoimmune diseases and have a normal range ANA. Rare but does happen.

The MRE is pretty accurate even without the contrast and if it was done correctly by knowledgeable staff it almost certainly have shown signs of inflammation, ulcerations or strictures.

There are also some pretty weird things that can happen when you have undiagnosed strep infections that have lasted a long time. You could ask your doctor about that but they will probably be dismissive.

Otherwise, I'm afraid they've done all the standard tests for CD and appear to have found nothing beyond that first sigmoidoscopy. I think if I were you, besides keeping a diary of symptoms (rate pain 1-10 scale, etc.) I would ask the consultant about getting testing done when you are actively symptomatic. Are you having symptoms all the time or for several days at a time or what?

As for anxiety, I would certainly be anxious in your shoes. Perhaps your GP can give you something for that and you can try to tell how much of your symptoms are anxiety-related and not.

Best wishes

 

[niccj]

Thanks I will do. It's more or less daily where I'm getting pains but only real bad every few weeks which normally ends up with throat ulcers, diarrhoea and worsening of reflux.
I think it's more the fact that I don't feel I'm being kept up to date properly from the GI that's upsetting me. Had throat ulcers 4 days ago and took pred for 4 days and they've gotten better sore dry feeling in my throat now so needs plenty of fluid. I'm waiting for another endoscopy because of the reflux but this is due to take approx 6 months. Have been to see rheumy and she felt that all was ok as the swelling didn't return, the tests were negative but the gastro tests were coming back positive or negative whichever way you choose to look at them. I am also under gynae and being treated for endometriosis so was also wondering if it could be something to do with that because when I get a bad flare of d the lower right abdo pain returns which is being controlled normally by zoladex injections but when my bowels play up badly the pain returns. I get a lot of severe pain in left hand side feels like a hot poker is being pushed through what I consider to be my colon? X

 

[Patricia56]

You could have endometriosis that has spread outside the uterus and might be responsible for many of the symptoms you are describing. My sister had stage 4 endometriosis where it had invaded her small intestines and part of them had to be removed to get rid of the endometriosis.

You should probably also be checked for celiacs if you haven't been. The gold standard for this is the endoscopy biopsies but there's a blood test that has a very high accuracy in diagnosing celiacs.

I would ask the gyne about the possibility that you need laparscopic exploration to look for endometriosis in your abdomen. I would think she would have a pretty high suspicion that this has happened now that CD has been apparently ruled out.