Question for those who have colostomy bags

[JoeyJava]

Hello there, long time, no see.

In a nutshell, my question is for those who have had large/small/both(?) Intestines removed.

Do you lose the feeling of "needing to go to the toilet" (that urge to evacuate the bowels) that is experienced in normal life before removal? I'm referring to that physical urge, you know? Sorry - I don't know much about this kind of treatment and can't find this particular answer.

The specialist I saw in December says that the treatment for me would be to essentially, re-train myself with dealing with this urge. As I cannot do this myself, my plan is to request some kind of removal to physically eliminate the sensation of going to the toilet, if that makes sense?

My problem is that apparently, my nerves are highly sensitive and are overstimulated by any intake, causing the muscle contraction that occurs when using the toilet (more so than as actually necessary - leading to a lot of mucus output).

Edit: " I'd like to essentially use a colostomy bag i.e. change the evacuation from active to passive."

Thank you all for your help in advance.
Best wishes and all my love,
Joey

 

[C J]

Hello, I have Crohns disease now for 48 yrs and left with 1/4 only of my small intestines. Last removal was 1988 but that time disease was part of my ilececeal valve along with more intestines. That last and 4th removal of more intestines to leave me then with only 1/4 of small intestines, left me with more diarrea all liquid no form, so cant hold or wait to find a restroom, barely feel and must get to one fast so dont always make it and it tied me have to know has to be close to make it problem full time now for me. Found ways and make it work better and if I dont know where bathroom is, I cant go to new places or look for where restroom is, left me tied close to one, where ever I go now. I work with it, accidents as much as make it, all part of accept I have Crohns and missing intestines and make the best of what goes on for me and try to do all I can and want and not let it take over or stop what I want or need to do? Feeling urge problem, yes take a good year after each resection or more intestines removed for body to adjust or y ou feel you know what happens and more, and finally you get use to what it does or what you need to do and becomes your new normal.
What ever goes on, its your new normal and you will adjust to keep living and not allow it to take over your life. I have made it work now for past 48 yrs as got Crohns at young age 20 b4 better medicines to they kept removing more, down to 1/4 of small intestines so full diarrea non stop, diet, no roughage foods no high fat foods body cant digest no fruits or hrd vegetables big help instead of 30 X all day diarrea, could go lil less change of diet low fat and less sugar and no roughage, down to 15 to 20X a day, diet had lots to do with how fad I felt........I had to learn and it made a change by 50% less problems for me..
I know some with Crohns and no diarrea.....................I got that at first told I now have Crohns, maybe you dont have that problem but other issues but I had to get use to never feeling normal, but if I could feel ok, I accepted that and tried to do normal things, few things changed, no fun but found ways to do what I wanted and always did previous and not let it stop me, have gotten by pretty good with that attitude and diet change helped in a big way too. Eat water soluable foods that break down easy, no high fiber foods big help, I had to learn what foods easy to digest adn avoid others hard to digest with the Crohns.
Good luck, but learning everything, you can help feel your best inbetween its there, and it flares up but you can help that less with better eating, easy digestion, I found out my first 20 yrs having it and got it 50% less pain and problems, diet was a big part of it all.
C

 

[JoeyJava]

Thank you very much for your insight - very helpful as a possible effect.

To add to my original post, I'd like to essentially us a colostomy bag i.e. change the evacuation from active to passive.

 

[JoeyJava]

Actually, he said it was some kind of rare, only-recently-researched form of IBS. I suspected I had Crohn's before I saw him, which is why I came here before. Not sure, maybe shares a lot of traits of IBD.

I thought it would be the large intestine, but just wasn't 100% sure.

Cells of rectum are hypersensitive, I think some kind of autoimmunity, but this is apparently where the problem initiates. My assumption is that removing what is responsible for the initial trigger for the contractions would inherently remove the "urge" to go to the toilet. Wondering how much of colon would have to come with it - do the effects of removing more vs. less colon differ i.e. life afterwards?

Cheers.

 

[MarkStrobel33]

Hi Joey. I had my colon permanently removed due to Crohn's in 2009. Since then, I have no urges or pain associated with bowel movements. I wish you the best!

 

[JoeyJava]

Oh great thank you so much - the problem I have is that I feel like the bowel is not empty, and each movement ends up taking longer and longer each time. It literally takes up half my day now. I get like 2 or 3 hours of sleep a night. It's like the urge you get if you have diarrhoea, but could be the full Bristol Scale each time. I'm hoping that I can convince the specialist to put me up for it, and also that I'm not excluded due to being so underweight.

Thank you again, this has really put away the lingering doubt that it wouldn't help me, as I'm kind of pinning all hopes of having a future, as there's nothing that has worked otherwise.

 

[MarkStrobel33]

Hi Joey. I believe that my surgeon told me that she removed my colon and muscles associated with the Colon which I assume are responsible for those sensations.

 

[JoeyJava]

Excellent, this is really sounding like it will be successful

 

[MarkStrobel33]

You will be fine! Just make sure that the hospital sets you up to receive ostomy care with an ostomy nurse in your area post hospital discharge. I cannot tell you how important it is for you to be fitted with the correct supplies to prevent leaks and skin irritation. A hospital in your area that offers wound care might also offer ostomy care. Also, the ostomy nurse will be able to order you an ostomy belt to prevent the development of stoma hernias.

 

[JoeyJava]

Lol no chance of any proper post-op care in this shithole. I just really hope he'll refer me for the operation - that's my biggest concern. 1 because it's not technically IBD (although I could argue a case for its classification) and 2 because I'm just so underweight because of the condition. I'd easily be able to recover the weight I've lost if this'd let me eat properly and normally again.

The treatment he prescribed isn't available on NHS, and the lesser, backup option has just not had any effect. I'm hoping that he'll understand this and agree to refer me. Oh God I really hope he refers me. 48 days to go until appointment...

 

[Bufford]

I have lived with The Bag now for 19 years, and if I could have my way I'd rather be intact than to deal with it. However, in my case it is permanent. If there is anyway to avoid the surgery I would pursue that first, colostomy surgery should be treated as a last resort. Upon discharge from hosptital it is essential to have an ET nurse who will assist you and provide information how to manage the ostomy. Do as much research as you can and ask your medical pratitioners to answer questions you may have. Look online for ostomy associations in your country, these can be of great assistance. Colostomy surgery is a life changing event, despite what anybody says about it it is a Disability, no question about it. It will be a lifestyle game changer. Hopefully there are financial assistance programs available in your country, as colostomy supplies don't come cheap.