Strictures with no evidence of upstream dilation

[Daisy123]

Hi all,

I haven't posted for a while. I have just been busy at work and trying to manage my symptons. I am the woman whose strictures seemed to have disappeared. Well, saw my surgeon who is lovely. He said that while my symptons indicate obstructions in my CT and barium follow throw there was no evidence of upstream dilation. He also mentioned the IBS which I know I have. We agreed no surgical intervention as there were no obvious signs of the strictures being an issue. So at the moment I am on pain management, reduced to wearing incontinence pants (after throwing three sets of sheets away), and low fibre. I presume what he means is that there is no actual evidence that my symptons are caused by the strictures and therefore my pain is IBS. I am contemplating going on liquids only for a while. I wondered if anyone had any advice.

 

[24601]

Hmmmm...I don't think I'd be that comfortable with just treating the pain and living with the incontinence (except I've been there and done that it's just with hindsight I wouldn't do it again or recommend it!) and I certainly think you deserve the best explanation of your symptoms that your GI can give you. And a treatment plan if this continues.

What meds are you on right now? And how does your inflammation levels seem to be at the moment?

Was a stricture seen on previous scans? How many? That's kind of key I think to compare with earlier scans. Strictures can be missed depending on the quality of the pictures they get, the person reading the scans and also bearing in mind that these are usually just snapshots of the bowel and orientation and peristalsis (such as it may be) can come into play.

I'd be a bit uneasy with explaining away debilitating symptoms with an IBS diagnosis when you have Crohn's too.

If you do go on liquids you may find benefit if you have a stricture but I don't think you can prove it conclusively either way - I've had strictures that still caused pain on EEN and conversely you can get benefit from a liquid diet for issues other than strictures. That being said you may feel better and that of course would be good - and can offer some additional evidence that your doctor *might* consider.

If your GI can't come up with a better explanation and plan to treat your symptoms then I think I might want my doctor to repeat the scan - probably an mri to minimize radiation exposure - or at least do more testing. And if your GI won't, well, I'd probably want to find a new one.

 

[Daisy123]

I just feel exhausted by it. I had the CT scan early last year which showed multiple small strictures. This was followed by a sigmoidoscopy which was clear with the exception of a few ulcers around the join. Then I tried to convince my GI to dilate them, before which they did a small bowel follow through which was clear. I presumed therefore that there were no strictures therefore. Then I saw my surgeon and that was his response. He is lovely and said when there is evidence of the strictures causing obstructive symptons he could do something. The whole IBS confuses everything. I was put on a gluten free and lactose free diet which made me worse. So I went back on low residue. I had an obstructive episode a couple of weeks ago but it could have been the flu. I have been too frightened to eat anything more than a sandwich since. I am on Pentsa and Aziathropine for the crohns. Buscopan for the IBS. dihydrocodeine sr, Amitryptline and Oramorph for the pain. My feeling is that I need to wait for my next appointment in July and hope that they will repeat the tests. It doesn't help that I am on the chubby side of things though.

 

[24601]

Have you had any recent blood tests done? And do you usually have a raised CRP when your Crohn's is active? Or have you had a fecal calprotectin test done?

Because it certainly sounds like active disease could be contributing to your symptoms. I'd want to rule out active disease, as well as strictures and any other possible issues (this Mayo Clinic article goes over potential causes of symptoms to check for in Crohn's patients) - for example do a stool culture to check for infections.

I think you should have an appointment with your GI to discuss all this before July.

Not being able to get adequate nutrition is really important, even if you are not underweight now. It's much better to not let things get to that stage. Your body needs nutrition to heal and function properly and it's possible to be malnourished while not being underweight. I do understand that doctors do not always pay much attention to us when we say that we are able to eat very little if our weight doesn't seem worrying to them. Know that a good doctor will listen and pay attention to that - if your GI doesn't then it might well be time to get a new GI.

What's your Crohn's history? And what surgery did you have before?

Best of luck

 

[Daisy123]

Multiple resections, last one in 2011. Pain started much sooner than usual after op. I have stricturing crohns. Usually op every 10 years. I am applying for a couple of jobs, so at the moment I am officially in remission so will wait until July. I know something is wrong but am tired of arguing about it.

 

[24601]

I understand. I was diagnosed with Crohn's 19 years ago almost to the day and it's been a long 19 years:ywow: I have stricturing Crohn's in the jejunum and ileum and I've had 4 surgeries in the last 14 years (3 resections and more strictureplasties than anyone can be bothered to count anymore) so I do understand the toll it all takes and also the importance of trying to prevent the need for further surgeries. For what it's worth I'm sending hugs :ghug:

I understand too the frustration of having no one listen when you know there is something wrong but not having the energy to fight. I call it's "Crohn's fatigue" and think of it as being rather like battle fatigue. We shouldn't have to fight for our doctors to listen to us and it's so wrong that people should have to do that when they are sick and least able to. I wish it wasn't that way.

I don't want this to sound like I'm being bossy and telling you what to do, but I do think you need a doctor who pays attention to your symptoms. What you are dealing with is not normal and you shouldn't be left to deal with it alone for months without having a good doctor trying to find the cause. I know it's hard but it's also hard living with these symptoms and that takes it's toll on you emotionally as well as physically.

If you can get some help with these symptoms (and it might be starting a new med like a biologic to get you properly into remission or if you have an enteric infection, getting treated for that) then you'll be better placed to take on your new job and enjoy life. You really deserve a doctor who will fight with you to achieve that.