Colonoscopy normal despite scarring on outside of terminal ileum

Hi
I had an MRI and CTE scan recently which showed scarring on the terminal ileum, which would explain episodes of pain and vomiting from a blockage. As no active inflammation was spotted a colonoscopy was up next to see if they could find anything. I had this yesterday and apparently my colon is perfectly normal and they got 10cm into my small bowel and had a good look at the terminal ileum, it's also normal. Still awaiting biopsy results though. The scarring appears to be on the outside of my terminal ileum. I was wondering if Crohn's goes into complete remission could this explain things? Over the years i've gone from having regular episodes of extreme pain, vomiting and nausea to now being fairly symptom free, if I am careful with my diet and don't drink a lot of alcohol. My period still causes some symptoms but they are mild as long as I am careful what I eat. Diet has been the single most effective approach for me.

Don't know the answer but I'm sure someone will.

Hello, I apologise for the delayed reply.

Scarring can cause all sorts of problems and often narrows the intestine, so it would make sense for this to be the cause of your symptoms, especially if its worse when you eat specific foods as this suggests that the pain and sickness could be caused by food getting stuck.

There is the possibility that there is inflammation further up than the scope could reach, but as you've had imaging done recently this would probably been apparent from those and they would be able to work out if the problem area on the scans matches where they ended the scope. I would recommend getting regular blood tests to keep an eye on things, and perhaps a faecal calprotectin every so often but other than that enjoy your reduced symptoms .

I also find I get an increase in my symptoms at certain points in my menstrual cycle and this unfortunately seems quite a common thing. From what I have read it is thought to be linked to the changes in hormones in our bodies. If it becomes problematic you could look into having a form of hormonal contraceptive like the implant or patch to help settle things down. I wouldn't recommend the pill though as due to absorption issues this can be ineffective for people with IBD.

Yes I had read it's common for IBD to get worse due to hormonal changes. I did try the pill and it was fine until I took a break, then I had two huge flare ups in a week. So I ended up coming off it because I would have to take it constantly to avoid the flare ups that happen when you stop. I think the recommendation is you need to allow yourself to bleed 3 times a year, so it wasn't safe to take constantly.

I'm seeing my gastro on Thursday, I got the biopsy back and it was normal. I don't know what we can do next, a laparoscopy would probably figure it out but then there are risks of more adhesions right?

redmazzy said:

Yes I had read it's common for IBD to get worse due to hormonal changes. I did try the pill and it was fine until I took a break, then I had two huge flare ups in a week. So I ended up coming off it because I would have to take it constantly to avoid the flare ups that happen when you stop. I think the recommendation is you need to allow yourself to bleed 3 times a year, so it wasn't safe to take constantly.

I'm seeing my gastro on Thursday, I got the biopsy back and it was normal. I don't know what we can do next, a laparoscopy would probably figure it out but then there are risks of more adhesions right?

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Hi, with my undiagnosed problems, symptoms appear to be the same as yours, except no remission! But, within the last 2 weeks, my mesalazine was doubled, low now lighter, less pain. Over the last 12 years requests for laparoscope have been denied as the risks outweigh the outcome. They cannot tell what is causing the flare-ups by looking at it from the outside. So, I was told. Did anyone consider endometriosis? I suffered with that condition many years, and between the endometriosis and undiagnosed crohn's, I am in a lot of strife today. Complete hysterectomy got rid of the endometriosis, but, the other problem was a pain I still carry and wait for diagnosis. All the symptoms of crohn's, no evidence! Frustrating. If they offer implants, go for it! They are wonderful way of obtaining hormone therapy. I did have the implants for many years, but, no longer available in Australia! Good Luck with your diagnosis, and best wishes for this new year!

Well the various theories so far are some sort of perforation that has left scarring, something related to my appendix, I don't know what they mean by that, maybe that it burst in the past? I don't know how that would happen though without being in very serious trouble. Endo was muted, it has been in the past too but the ultrasound didn't reveal anything and two gynies said they didn't think it was endo. The only way to be sure was to have the laparoscope test but I declined.

My periods don't really bother me too much to be honest, yes I have had gut pain with them, in the past if i had drunk alcohol prior to my period, say 4 days before I got very drunk, I would end up in hospital on the 3rd day of my period with a blockage in my bowel (pain, nausea and vomiting). Same happened at New Year, I don't usually drink because of these problems but as it was NY I drank more than I normally would. I barely had a hangover but two days after I had been drinking, I ate my breakfast then had terrible gut pain for half an hour and then threw up. I was fine after just fatigued and slept for two hours. That's the worst symptom I've had in recent years. I also can get ill on holiday for no apparent reason, I think it might be encountering different bacteria, sets off the flare. It's more likely to happen if my period is due a few days time. It feels to be like my period triggers inflammation anyway, so if you add anything on top of that I'm in trouble. I eat very carefully around my period and would not touch alcohol.

I've had a perforation and was in serious trouble so I would be wary of that suggestion based on my own personal experience.

Have you had the pill cam?

eleanor_rigby said:

I've had a perforation and was in serious trouble so I would be wary of that suggestion based on my own personal experience.

Have you had the pill cam?

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Not this time, I had one ten years ago, results were normal of course. Gastro says we can't do a pill cam this time because of my stricture. Too risky.

I did go into a remission from about 2007-2009 which was good as I was in Afghanistan part of that time and med's weren't there. I did watch my diet and well I hardly ate anything over there the same things tuna, fruit and oatmeal with the occasional rice from villagers thrown in.

Alcohol unfortunately is a huge flare with me.....I might as well drink it on the toilet.....well at least my Baileys and wine. I can sometimes have a glass of Jameson on ice....but with the meds I'm on I avoid it now except those rare occasions with I just say screw it I want a drink with my mates.

I believe having the lower fiber diet is helping with me. My nutritionist put me on this diet. It is mainly to help with the pain from my strictures and fistula. Have to hold out for my surgery for another month maybe sigh. Anyway, I believe diet can be a huge key but scarring is scarring and that can only be taken care of with surgery.