Please Help, Frustrated with Doctors

Hi,

I’m new here, I have suffered from severe bowel problems for many years but I’ve had no luck with doctors actually helping me. During this current episode I have been suffering from very severe constipation, even strong laxatives no longer work to help me have a bowel movement. I’m lucky if I can have one once a week an even then it’s only if I decide to take an enema. I have a lot of bloating (I look pregnant half the time), my stomach is constantly making noises and a lot of time really bad stomach cramps. This time I’m having severe rectal pain too, which I’ve never had before. All of this has been going on for the last several months and I’ve lost 15kg (around 30lbs) since September. I have a doctors appointment on Monday with my GP but my fear is they’re just going to send me home with more laxatives and maybe some pain killers again and not be able to help me. I’m convinced there’s something wrong that’s causing all of this but in the past they’ve given me no help. I’m not sure what to do, did anyone has problems with getting a diagnosis to their problems?

Yes. The last time I saw one was around two ago. I had ended up inpatient the hospital after multiple ER visits for uncontrollable diarrhea and severe stomach cramps. They sent a GI doctor to see me. He ordered xrays and a CT scan. But I only ever talked to him twice the 5 days I was in the hospital. They had kept me there on a liquid diet to allow my digestive system to ‘rest’. They basically told me they didn’t know what was wrong with me, maybe I should see my gynecologist that maybe it was complications from leftover over scar tissues from having multiple surgeries for endometriosis. (GYN said no way that was the case. But they basically then sent me home with no diagnosis after my hospital stay. I have had other episodes of either severe constipation or diarrhea with all the bloating and pain that goes with it since then, I went back to the doc another time with a severe constipation issue, severe pain ect ect but when my GP sent s referral to the GI doc it was denied. Since then I have just dealt with it since I don’t have much faith in the healthcare system. The way it works here is I have to see the GP to get a referral to a GI doc if I need one. But this time this episode is so severe I feel like I absolutely have to go see some one. I’m so frustrated.

I changed my diet quite a while ago to include plenty of fiber and also probiotics hoping it would help. I eat muslei that has a high fiber content with filmjölk (it’s kind of like thin sour tasting yogurt) that has probiotics in it everyday for breakfast.

Unfortunately I can’t demand a scope. I live in Sweden and with our healthcare system everything has a process. I have to see my GP first and get a referral to a GI doctor, then wait for an appointment (which, assuming they accept my referral can take up to 3 months) Only then could I get a scope and they’ll only give me one if a doctor thinks it’s absolutely necessary.

Getting the referral to the GI has never been a problem, it’s getting the GI to accept my referral that is the problem, and all referrals regardless of which GP you go to go to the same place for approval to the GI specialists. The problem we’ve been having the past few years is that our system got overloaded after the refugee crisis so unless they deem your problem really, really substantial you can get denied. So you get stuck in this hell of being bounced back and forth between your GP (who cant fix or diagnose your problem) and a specialist who either can’t or won’t take on your case. Maybe this time it’s severe enough they will accept me.

Thank you.
Yeah, 15 kilos in 4 months is a lot, and I haven’t been trying to lose the weight, it’s just been coming off. I was a bit overweight before, so I’m not underweight now but it’s still a pretty rapid weight loss.

I actually have no problems with the endometriosis anymore. I had a full hysterectomy 10 years ago which took care of my problems in regards to that (I was living in the US at the time and had a great doctor). The GI I saw suggested perhaps it was scar tissue from the myriad of surgeries I had in my 20s as a result of the endo that might be giving me trouble (I had 9 in total) or maybe somehow I had had endometrial tissue grow back. My GYN said this was a ridiculous hypothesis. So I believe these issues are separate from my history with endometriosis. But it is definitely a habit of the Swedish healthcare system that if you aren’t easy to diagnose you get tossed back and forth between people with very little help.

I hadn’t considered Crohns. I have a friend with UC, so it’s the only IBD I’m familiar with and why I posted here. I know my issues could be any number of things I was just looking for some perspective as feel really lost.

iPoop said...
I would ask your GP for a stool test to check for intestinal inflammation (fecal calprotectin), and a stool test to look for pathogenic causes to your symptoms. If you can prove you have intestinal inflammation and that it is NOT an infection then a gasteroenterologist-specialist would be more compelled to give you a colonoscopy for investigation for IBD/UC/crohn's.

A lot of blood in stool is a calling card for UC.

You could have IBS or an intestinal-motility issue (muscle movement).

Hard to say, you need some labwork and a colonoscopy.

There are a few IBD lab tests based on only bloodwork, pretty new and not used solo for diagnosis, but a possible plus if you need more evidence to investigate further. Take a look at Prometheus Labs and you'll see the tests I'm talking about.

https://www.prometheuslabs.com/products/default.aspx

This is excellent advice, thank you. I can definitely ask for bloodwork and a stool test at my GPs office. I have previously had a lot of problems with blood in my stool.

Make sure you mention to the GP that you had blood in your stools! That is a bit of a red flag for IBD...