Complicated Case

[Blue-106]

Hi everyone, I’m new to this site. I was diagnosed with ibs but I think it’s more than that. The main problem that started about April 2020 is nausea and trapped wind in my stomach, if I relieve the wind the nausea generally goes away. I sometimes get acid reflux and heartburn. I also have had issues to varying degrees with an eating disorder since I was 13 (I’m 41 now) I had anorexia, and wouldn’t like the idea of food in my system so I would manually evacuate (with medical gloves) to check I was empty. I wonder if I have damaged my lower bowel doing this as I now sometimes “need” to manually evacuate to empty my bowels. I also take 2 senna a day and “feel” I have to do that to go to the toilet. I also feel weak and fatigued and like I could faint a lot. I wonder if it is connected. The worst thing is the nausea, I’m scared to go into public places in case I’m sick.

[b1b1b1]

See a colo rectal surgeon. They deal with this type of problem and, I think, will be able to diagnose it quite quickly. After checking the anal area with a colo rectal doctor then you may want to see a gastroenterologist for ongoing help with diet, laxatives, etc. But see the colo rectal MD first as gastroenterologists do not physically examine the anal area.

[Blue-106 in reply to b1b1b1]

thanks for your response, I’ll look into this.

[ashik007]

Hi. I too had issues with anorexia since my teens and constantly took laxatives. I also manually cleared my bowel. I suffer from acid reflux and ibs but i stress less as i stopped taking laxatives 2 years ago as i am now 48. I got checked out and found i have ulcerative colitis. This is due to manual evacuation so you may want to get this looked into. Adopting a diet of eating less food ie less bigger meals and more smaller ones works for me. Do hydrate and try to maybe meditate. Sounds hippieish bit less stress less nausea. Easier said i know. But get a referral from your doctor explain issues and get colonoscopy where they will give you some indication of damage done. Cut down on senna. Maybe to 1 instead of 2. Then eradicate after a few months and only take if you do not have a bowel movement in a 2 day period. Good luck.

[Blue-106 in reply to ashik007]

thanks it’s reassuring somehow to hear from someone with such a similar background. My dad had the condition you’re talking about, it’s interesting that came from manual evacuation. I certainly need to come off the laxatives, easier said than done, I’ve got a referral coming up with a eating disorder specialist, I’ve been diagnosed with OSFED (other specified, feeding or eating disorder). I do only eat small meals and drink lots of water, I’ve cut out anything that can make things worse ie smoking drinking etc. I’ll try more relaxation because I have noticed if I’m less stressed my stomach is better. I think it’s fair to say a fair bit of this is psychological or at least come from that. I’ve got an appointment with the GI too.

[Meleber]

Have all underlying possible causes already been excluded with the currently available examinations before you got diagnosed with IBS and is IBS a definite diagnosis or was it a working diagnosis? Have you had a manometry of your intestines? Could be related to the muscles/nerves of your intestines, maybe a part of the bowel isn'tn working as it should and a manometry could rule out this underlying cause.

[Paulol in reply to Meleber]

If it's caused by muscles/nerves, is there any treatment available for it?

[Blue-106 in reply to Paulol]

I hope so!

[Meleber in reply to Paulol]

As far as I know there is no cure for (congential/acquired) chronic intestinal pseudo-obstruction (CIPO), this is the functional bowel disorder I meant when I mentioned the problems of the nerves and/or muscles of the intestinal/bowel wall. You can only try to alleviate the symptoms. I will go to the university hospital Leuven, Belgium, for a (first) consult to discuss CIPO as the possible underlying root cause of my chronic functinal bowel problems, by the end of September this year.

[Paulol in reply to Meleber]

Please keep us informed, best wishes

[Meleber in reply to Meleber]

Only one and a half weeks to go for my (first) consult 🙂

[Meleber in reply to Meleber]

So I finally had my consult (second opinion) in Leuven (Belgium) at the gastroenterology unit of the university hospital after I did see a medical doctor at the gastroenterology unit of the university hospital in Groningen (The Netherlands), beginning this year. The consultant I spoke with also doesn't think that my functional bowel problems, chronic constipation, in my right lower abdomen, is a result of pseudo-obstruction (CIPO).

Therefore, the first working diagnosis from 2019 still stands, a functional bowel disorder (FGID) leading to chronic constipation in the first part of the colon, the ceacum in my case. I think the nowadays more appropriate naming is a disorder of the gut-brain interaction .

I told the physician that I use bisacodyl 5mg, 3-4 times daily to keep the chyme/bowel content flowing. He said that I should better use linaclotide, a secretagogue (Constella/Linzess) (better transit/may lower abdominal pain/stimulates secretion of chloride/bicarbonate/water into the intestinal lumen) on a daily basis and maybe 1-3 times during the week bisacodyl 5mg, if still necessary. Unfortunately linaclotide is only available in one dose, 290mcg capsules in the Netherlands. After my consult with a GP and the pharmacist yesterday, I will try to open the capsule and divide the content over four smaller capsules so I can start with 72mcg to treat my chronic constipation. I have a digital jewelry scale so think I can manage this 🤞🏻. Lower dosages than 290mcg linaclotide (145mcg and 72mcg) for chronic constipation have already been approved by the FDA in the USA.

[Blue-106 in reply to Meleber]

my diagnosis is a working progress as there does seem to be physiological aspects to it and psychological aspects to it. IBS is one of the things that’s been mentioned plus an eating disorder. I’ve not had a manometry but thank you for helping me realise this is a possibility, maybe I should have that done.

[Meleber in reply to Blue-106]

Problems with eating, amongst others, could be caused because by CIPO, that's why CIPO also should be ruled out as possible underlying root cause. Also all kind of other all over the body neurological and physical problems could be a result of a malfunctioning (part of) gastrointestinal tract in the end. I experience this myself unfortunately. It runs in my family, the functional bowel problems, so probably some bad genes.

[artisticmum]

I think ulcerative colitis is an inflamatory bowel disease caused by the body attacking itself, not by manual evacuation. Crohns disease also falls into this category. Look at the Crohns and Colitis charity website.

[Blue-106 in reply to artisticmum]

Thanks, I looked them up, I don’t fit the symptoms. They look pretty serious and unpleasant too!

[MyStar86]

The is also a study called an MRI proctogram have a Google and look into it as it will show if you have any kind of prolapse in your rectum. It will help the gastro aid treatment and diagnosis.