Confused

[Mel]

I am writing on behalf of my husband. He has had stomach trouble for 20 years and has numerous scopes and tests which have ended with a diagnosis of Irritable Bowel Syndrome. He has been scoped down the esophagus and up the butt, as he gets spasms and is unable to swallow for hours as well as ongoing diarrhea and stomach pain.

The last 6 months have been extreme and he has lost 20 lbs and is unable to eat anything. He had another endosocpy and colonoscopy last month that came back negative and the Dr. told him once again that it was irritable bowel. He tries to get nutrients through Ensure and other meal replacements, but is in awful pain after he eats anything. He has joint pain in his hands and feet as well.

After his last Dr. appointment we asked that he be tested for parasites, food allergies and also have x-rays of his upper GI and small bowel. His symptoms have gotten so bad during the last six months we are at wits end. He has always been an extremely high energy person (annoyingly so!) and right now he isn't able to do anything. At first I thought it was Celiac and he cut out wheat/gluten, but after a few months he is no better. Do his symptons sound familiar to anyone else who has been diagnosed with Crohn's? He has seen a gastro who also gave him the IBS diagnosis.

Any help would be much appreciated. Thank you!

 

[Jeff D.]

I can't offer much help to him but I can offer my prayers.

Best of luck

 

[soupdragon69]

Hi Mel (and hubby),

I really feel for you both at the minute and understand why you are at your wits end and desperate for answers.

I was diagnosed with Crohn's last December (Tues before Xmas) and have just come home (about 10days) from a 2.5wk hospital admission.

I ended up on a specialised diet under the hospital for my Crohn's which involved prescribed drinks and no solid food. Every time I tried to eat again I ended up in agony and spent my day running to the loo with urgent painful spasming diahorrea.

With this admission I was diagnosed with severe irritable bowel syndrome and put on antispasmodic drugs. I am finally getting some relief from central abdo and left sided pain and managing to eat again with relatively normal bowel movements moreso now.

My understanding is they need to rule out everything else to come up with a diagnosis of IBS. I did have gastric emptying and bile salt absorption tests last autumn which also helped with my diagnosis of IBD and IBS also. IBS in itself can be very debilitating and I understand the distress you are both going through.

My thought would be keep persuing an answer if you feel there is more to it. At the end of the day "A SCOPE" can only go so far into you! Thats why we have other tests and you are right to request them.

I really hope your hubby gets some relief soon and you also from watching him.

Hang in there! Let us know how you get on....


Thinking of you

Jan

 

[kskitt]

i used to have a lot of energy before i fell ill,but as soon as it was diagnosed and i was put on steriods,the energy level has increased,all though not to the full

 

[Kev]

Hi Mel & hubby (by proxy).. you titled your intro with the term 'Confused', and I don't want to add to your confusion... also bear in mind that none of us here are medically trained... just novices like yourself with varying degrees of personal experience.. And everybody's story & case is different.. Having said all of that, many of your hubby's experiences/symptoms mirror my own.. I too had (and to some degree still suffer) excruciating pain after eating anything.. At the worst, even drinking water hurt like hell.. (that eventually put me in the hospital). I lost close to 80 lbs.. photos of me at my worst look like a skeleton with skin stretched over it.. however, my case was extremely complex at the time. I had pancreatitis, and two very large pancreatitic cysts. doctors thought that they were the cause of the pain I got from eating... and that I had gallstones (however, none showed up in any diagnositic imaging.. X-rays, sonograms, CT scans). Their theory? that my stones were microscopic.. so they took out my gallbladder. (after the cysts had reduced themselves to allow for the surgery - that came about thru time and diet).
The result? they said i was cured.. and the pain had subsided.. but didn't vanish. I would describe that pain as feeling like I was trying to swallow broken glass. Does that resemble the pain your hubby feels? Anyway, prior to the g/b removal, a GI had tentatively dx'd me with very mild colitis.. and put me on anti-biotics.. metro-nidazole (sp?).. My pain immediately increased.. Dr's thought it was due to the a/b.. which they took me off of.. Then my bowel symptoms increased almost on a day to day basis.. Back to the g/b surgeon.. he seemed to think it wasn't due to his surgery.. then off to the G/I surgeon.. he scoped me again, and told me that I needed an emergency resection.. seems the mild colitis had flared totally beyond treatment.. so out came 1 1/2 ft of colon.. He told me at the time that it was type of colitis called Diverticular associated colitis, and removal of the colon would cure me forever.. that lasted about 6 - 7 weeks.. then all of the symptoms came back with vengence. I'd seen other G/I surgeons, and consulted another GI specialist to see if they could explain my pancreatic symptoms resurfacing post surgery. The upshot? Another scope revealed that my colon was totally involved again, just few weeks after surgery... and that it was either ulcerative colitis or crohns disease. It is relatively immaterial at this point... unless we get to the stage where the rest of my colon comes out.. however, if crohns, and involvement of the pancreas and liver, that would explain the pancreatic symptoms.. the painful eating? It never has been explained to anyones satisfaction.. but it has diminished to a tolerable level.. Like, I eat to take my meds, and I typically experience moderate discomfort approx 45 - 90 minutes post... Where am I going with all of this rambling/venting?
I dunno your location... what your health coverage and diagnostic options are, OK
Here in Canada, I was seen by the best (reportedly), and they weren't able to get to the bottom.... I may have paid a price physically, but it didn't ruin me financially.
If you have the luxury of pursuing this, then you might want to get 2nd opinions.
Like, what are your hubby's enzyme levels like? Is his pancreas functioning right?
Theres' a nasty/messy/ humilating (at least for me) test they can do on the levels of material in the stool.. Means collecting all of the stool output. not nice process.
Has he had CT or MRI? Has he seen GI? An endrocronologist? An IBS nutritionist?
Guess what I'm trying to say is that IBS or IBD related illness can be extremely difficult to diagnose, diagnosis by even the 'best' docs can be wrong, so you may not get the right answer if you pursue this... but having been in shoes that sound similar to your hubby's, I'm so glad that I live in Canada and was able to pursue it and make the progress that I have w/o betting the farm/losing my home, etc, etc..
I pray that you have the option, and that you find an answer that will turn things around for your hubby. constant pain, losing ground, been there/done that, its' not a place in my life that i'd care to revisit. let us know how you guys make out..

PS welcome to the forum.. hope others input is more beneficial/optimistic than mine

 

[Mel]

Thank you for the info so far! We live in Northern Ontario so we do have the luxury of free (??) health care, although there is a severe Dr. shortage and very limited resources. If there is no definitive diagnosis after this latest round of tests - blood work, stool samples and x-rays then we will go to the Lockwood Clinic in Toronto. I have heard mixed reviews, but am hoping we will be able to get to the bottom of what is wrong.

The one thing that I haven't really heard anyone else mention as I was reading through the forums is the swallowing problem. I don't know if it is related to the bowel problem or not. He actually had this esophagus stretched many years ago to help with this. He was also on muscle relaxants when it got really bad. Since the esophagus is part of the digestive tract I am inclined to think that everything is related, but so far the Dr.'s have not said anything about that.

I can't believe how complicated all this is. He has also had kidney stones and his appendix removed when he was in his teens (He's 40 now). I never even thought that these might be related until reading the last few posts. I (we) really appreciate the input!

Mel

 

[soupdragon69]

Inflammatory Bowel Disease can impact on other organs as Kev rightly says Mel. Whilst in recently they checked me for other autoimmune and liver probs. I was diagnosed with hypothyroidism 10yrs ago and the GI team told me this can also impact on your gut! I am also a brittle asthmatic and have several skin probs which they have said is all connected.

On top of this I do have an element of swallowing probs - where I feel food is stuck at the upper end of my throat as though its in the lining and wont move. Takes several drinks of water to get it to shift and sometimes I just end up coughing it up and out (sorry for the graphics). Crohn's can affect ANY part of your GI tract from mouth to anus and as I said in my earlier post a scope can only go so far.

The problem many doctors have is so many diseases and syndromes have identical symptoms - bit like you think you have a cold but then later realise its a bad flu as it developes. IBS and IBD do have similar symptoms and thats why its so important for you to give as much info as possible to them no matter how trivial it seems.

Two examples I can give you are: for years I had a sort of rash down my shins and tops of my feet like little bright red pen marks that were actually blood spots in the surface of my skin. Derms told me it was dermatitis and I kept thinking dermatitis aint bright red like this and this dont itch, dry up or go away under a glass. Once diagnosed with Crohns the GI realised when I showed him that day of diagnosis is was Petechie (sp?) and that I had a vit K deficiency causing me to have these little blood hemorrages in my skin. Because of where my crohns is I wasnt absorbing my fat soluble vits. Hence the deficiency. Now I am absorbing better the "rash" has gone.

The second example is my cholesterol has always been extremely low. Here in the uk they say 4-5.5 mine has always been 2.8-3.2 and no one could tell me why. The bile salts test they did showed I wasnt reabsorbing my bile salts but rather passing them out of my body and it was contributing to the diahorrea I had. GI also said its why my cholesterol was so low all these years because I wasnt breaking down fats properly. My Crohn's is in my ileum where bile salts are reabsorbed.

So you see Mel it can be the most unrelated things. Many crohn's folk also suffer exhaustion to different levels which can be extreme when in flare, muscle and joint pain or stiffness. Kidney stones, gall stones, pancreatic probs can all be linked too.

Dont give up. Keep pushing for answers. You will find many here to had to fight for answers over the years and others who were diagnosed in a short time. Its not a nice series of experiences/tests to go through but when your quality of life diminishes so much you will do anything to get it back or have some reasonable level of stability.

Keep talking to us. We will always listen even though we are not medically qualified we do understand.


Jan

 

[Heathcroft]

Hi Mel- you've had some good advice already here (I see) so I won't add much except to say that I wasnt diagnosed for years and lived with lots of horrible symptoms similar to those you describe. (I have Crohns' and S.B.S (short bowel syndrome).

You have to persevere and ask for second opinions if necessary and hopefully you will get some answers.

You have my empathy in this and our support here too. If you have a specific question after reading any of our posts, please fire away!

 

[HDGirl]

Curious

I am not a Dr. But what makes me curious about your husband is the dysphagia (dificulty in swallowing). Crohn's can affect any part of the digestive track but Dysphagia is uncommon... ulcers in the esophagus is more common. The inability to swallow sounds neurological to me. Could it be on top of IBS your husband has something neurological going on? Or manybe there is a neurological problems that can can cause bowel symptons.

One neurological problem I thought of is Arnold Chiari's. Arnold Chiari's is a malformation of the foramen magnum (base of skull). The cerebellum can poke thru and be compressed causing swallowing disorders and extremity pain. Severe cases can be sugically fixed but minor cases can be treated. It was just a thought I needed to get off my chest. I wish you the best of luck.