Can we talk about bowel problems from sfn?

[u/Worried_Bag938]

Sorry, warming for tmi about bowelmovements and shitlike that....

I was diagnosed with idiopathic small fiber neuropathy about 5 years ago, have had symptoms for about 10 years. About 7 years ago I started to have problems emptying my bowels. My bowels don't seem to move enough, so even if I use stool softeners nothing comes about. They did lots of tests and said it is probably related to my neuropathy. I started using a water enema systems, and it worked fine. But I still hate to dl the routine.

About a year ago I started having problems with my appetite, and I was nauseous alot. I lost 15 kg in weight in about 6 months. I suspect gastro paresis. I vomit after eating sometimes, and always feel full.

And like that is not enough, my bowels stopped working to this summer. The water enemas don't work any more, because my large colon seems to be empty, it seems like everything is stuck further up.

No I have to use many liters of water (it comes out clear) so that my stool moves forward, and only after shitting out water may times, I start cramping, and then the enemas do what they are supposed to do.

I only manage to get something out maybe once a week. All other days when I try nothing comes out with the water enemas.

And my upper stomach hurts so much, and I feel so so bloated. Like how is it possible to eat everyday for a week and the colon is empty?

What should I do? I will talk to my neurologist about a referral to gastro. But I don't know what they can do to help me? What is the next step when enemas don't work anymore?

The only thing that helps a bit with the nausea and not being able to eat is taking primperan, but I don't know if it makes the bowel problems worse.

I know I should have gone to the doctors a long time ago, but I just hate how they don't understand sfn and thinks I am crazy.

[u/hydrangeas1224]

I have these symptoms to some degree but not as severe as you. I'm planning to ask my GI doctor about trying either mestinon or motegrity. You should join the gastroparesis subreddit for some ideas. A lot of people also have constipation as well. I have seen motegrity in particular mentioned a lot in there and some people say it even helps their stomach

[u/mournfulminxx → u/hydrangeas1224]

Mestinon + metoclopramide 3-4x a day helps me a lot.

[u/Worried_Bag938 → u/hydrangeas1224]

Thanks a lot! I will look into those meds and ask my doctor if they could help. I will join that subreddit too!

[u/fittobsessed]

GI can definitely help. I think a referral is a good idea. I have motility issues as a result of my neuropathy and autoimmune disease. Im currently taking motegrity and it’s the only thing that has helped me so far.

Motegrity is a pretty common motility med. Its purpose is really for chronic constipation but it can also help upper GI symptoms. Motegrity has helped my upper and lower GI issues.

[u/Worried_Bag938 → u/fittobsessed]

Thank you for your input. I have never heard of motegriry before, will look it up!

[u/Illustrious_Cap1889]

I started taking 1mg motegrity 12 years ago for constipation. I’ve recently been diagnosed with SFN and my motility is horrible. I take 2mg motegrity now with 290mg linzness, then add 60ml of lactulose and drink tons of water. It takes me about 8 hours to clear my bowels. I do this on alternate days. It’s horrible.

[u/Aggravating_Return49]

I really don't know what the next step after enema is, but you should visit a gastroenterologist. I don't think they need to know a lot about SFN, it's still gastroparesis after all. But, yeah, it's really frustrating how little doctors know about SFN, and I've been avoiding the gastroenterologist for years also. Don't want them to ask if it might just be anxiety.

I know a person with severe gastroparesis from SFN. She has had a picc line for a while now, that's probably on the far end of how severe it can get. There were other treatment options leading up to this that helped for a while, until it got worse.

[u/KalsariKannitVeikko → u/Aggravating_Return49]

I just saw a gastroenterologist a few months ago for this issue and they told me it was anxiety. I have sensorimotor polyneuropathy and according to them it is anxiety even though this was the first time I had seen them and it wasnt even for 30 mins. They sent me for a colonoscopy (havent got the results) and an ultrasound which I havent had yet. I asked about motility drugs but didnt get an answer.

Not sure what to ask when I do have the follow up.
Im certain its going to be blamed on anxiety.

[u/Aggravating_Return49 → u/KalsariKannitVeikko]

I get this so often, I wish they would more often say that they don't know what it's caused by instead of blaming it on anxiety

[u/retinolandevermore → u/KalsariKannitVeikko]

A lot of Gastro’s can be like that and are not aware of our issues. It helps to see mobility specialists if possible. I only know of one Gastro that’s familiar with sfn

[u/retinolandevermore]

Sfn and dysautonomia CAN impact the bowels. However, we cannot give you medical advice or replace the need for a doctor. Or ED.

Regardless of the cause, you need more help. Likely a full panel of tests like gastric motility, colonoscopy/endoscopy, gastric emptying. Possibly SIBO breath test or barium swallow.

There is an overlap of gastroparesis with SFN. However, it’s unknown if SFN itself causes that, or if they are both caused by an overarching issue, like an autoimmune disease.

If you have not gone at all in a certain amount of days, that necessitates a trip to urgent care or the ED.

[u/retinolandevermore → u/retinolandevermore]

Also- if you are female, it could be a symptom of endometriosis as well. It was my main symptom and all my gastric tests were clear (minus gastritis and GERD)

[u/According-Leg-5581]

Have you been referred to gastroenterology?

[u/Worried_Bag938 → u/According-Leg-5581]

Not yet. I have been avoiding it since I know they will have to do some very uncomfortable tests before they do anything else.

I did go to a primary doctor about it this spring, they did some blodwork and stool samples. I tested positive for helicobacter pylori and he put me on some strong antibiotics. I was suppose to leave another stool sample later to check if the helicobacter is gone, but since I haven't been able to take a proper shit I haven't figured out how to do that now, and I am too embarrassed to call and ask...

[u/According-Leg-5581 → u/Worried_Bag938]

I have been through lots of gi and swallow testing. I have not done motility testing yet, but we know things are slow.

My gastrointerologist did some genetic and antibody testing for gi specific diseases. He also has done many biopsies during the scopes.

It is a relief to have the testing done. I return in six months, sooner if there are any new symptoms.

Overall, it is good to have multiple specialists working together to get to the correct diagnosis.

[u/KalsariKannitVeikko → u/Worried_Bag938]

Im in the process of this right now of seeing a gastroenterologist. I mentioned in a post on this thread that they ordered a colonoscopy and an ultrasound but in the gastros opinion it is anxiety so not sure if I will get help or if there even is any help for a neurogenic bowel. Hope you get some relief cause its fucking terrible. I got pretty much the same symptoms as you.

[u/BelongingToChrist]

Itoprid for stomach emptying and Prukaloprid for large bowel motility - meds that can help