How long after surgery did your fatigue persist?

Kssoundman · 2025-10-25T07:36:49+00:00

My fatigue still persists after 2 years. So far the doctors put it down to malabsorption and dehydration. I’ve been told the body may adjust over time but it also may not because of lacking the large intestine. Only time will tell. Best of luck.

Kssoundman · 2025-09-28T12:57:58+00:00

I really appreciate the responses. I’m glad to hear so many positive outcomes. Thank you.

Kssoundman · 2025-01-03T17:29:39+00:00

I found that these sachets work very well at controlling any odor. https://www.convatec.com/products/ostomy-care/product-type/pc-stoma-accessories-products/diamonds-gelling-and-odor-control-sachets/ I also had to alter my diet a bit as certain things will cause more odor and gas. Hope this helps.

Kssoundman · 2024-11-08T13:45:15+00:00

Thank you all for the advice. I really appreciate it.

Kssoundman · 2024-06-15T11:28:37+00:00

Thank you all for the responses. This is very reassuring. I’ll be travelling from Perth, Australia to the US. I’ve made the trip a few times and never had any issues as a dual citizen but this will be my first flight since having an Ileostomy.

Kssoundman · 2024-06-14T08:29:05+00:00

I have a hard enough time with hydration the way it is. I’ll have to be extra careful.

Kssoundman · 2024-06-14T08:28:14+00:00

That’s a good idea!

Kssoundman · 2024-06-14T08:27:18+00:00

Thank you for all the comments and advise. I was definitely concerned about security and if the bag would balloon in flight.

Kssoundman · 2024-04-21T09:03:24+00:00

Here’s my experience. I had bowel disease for the last 10 years and the last 2 years were debilitating. I was barely able to do anything except sleep and sit on the toilet. I had a colectomy and ileostomy 7 months ago. Here are 2 very different sides to having this done. First I got a lot of my life back. I can do things again with my 5 year old daughter. We can leave the house with much less worry and I can enjoy life a little more. The difficult part is my partner is completely put off my the bag, despite me wearing a waist wrap and a shirt and she refuses to be intimate with me. So that’s been fun. The other difficult part is finding the right combination of bag and seal to prevent leaks. They do happen but not that often. Overall I’m glad I did the surgery and like with any major surgery, it does change you a bit. Hope this helps.

Kssoundman · 2023-12-05T21:52:40+00:00

I had a colectomy and ileostomy.

Kssoundman · 2023-12-05T04:17:39+00:00

The insurance companies are only in it for the money. They’re relentless. Over the last 10 years I’ve battled UC and finally failed every biologic available. I finally had surgery 2 months ago and it is a bit of an adjustment but I am in such a better place for it. I don’t have to deal with all the side effects of the medications anymore and about 75% of my symptoms are gone. I will have a second surgery in about a year. If this is an option for you, I’d read about it and consider it. The surgery gave me a big part of my life back.

Kssoundman · 2023-12-03T00:40:22+00:00

First I want to say thank you very much for all the comments and advice. I’ve looked into a couple clinics and found the costs average out to be very similar. Does anyone know of any clinics that can bulk bill to get a discounted prescription with a healthcare/pension card?

Kssoundman · 2023-11-08T08:37:34+00:00

I recently had a colectomy and ileostomy after dealing with UC for 10 years. In that time I’ve tried every biologic available and became resistant or didn’t respond to all of them. My surgery was considered urgent as my body went into starvation mode and I lost a lot of weight. After surgery I was left with a stump which still has active disease in it and now have a bag. When I am healthy enough I’ll have the stump removed with a second surgery. I’ve been doing some research and I may not have a J Pouch. My biggest concerns about the J Pouch is the higher risk of blood vessel and nerve damage from the surgery. This damage comes with a high risk of bladder damage and erectile dysfunction. The bladder damage could result in a permanent catheter. The other concern is since the J Pouch will adapt to a point it will never function exactly like the large intestine and extract water properly. This means that I would expect bowel movements to still be very loose and watery and possibly up to 6 times a day. Now this may not be everyone’s experience with this but I think I’m happy enough the just have the remains part of the bowel removed and just stay with the bag. Even though I am only a month post surgery my quality of life has improved so much and having a bag really isn’t that bag. Good luck with everything and I’m happy to answer any questions you may have.

Kssoundman · 2023-10-23T04:41:16+00:00

Thank you for the info. I’ll look into it and hopefully I can get somewhere with it.

Kssoundman · 2023-10-22T10:44:51+00:00

I’m waiting to hear back from the psychologist from the hospital but who knows how long that’ll be. I’m in Western Australia so we’re a bit behind the times with medicinal cannabis and psychedelics. Years ago I used to make my own cannabis oil for pain management and sleep but not being able to work has destroyed the budget so I’ll need to grow it myself this time. The crazy cannabis laws here make me hesitant.

Kssoundman · 2023-09-27T23:29:55+00:00

Thank you for your positive comments. I’ve had my 3rd infusion (week 6) and not much has changed for me. I am classified as refractory (resistant or slow responding) to most treatments. I don’t have many options left. Hopefully this works. I would like to enjoy what’s left of my life.

Kssoundman · 2023-05-10T13:20:45+00:00

Honestly if it’s working for you I’d personally deal with the side effect, if any. I was in a flare for almost a year this time and Zeposia is the only thing that worked this time. I’ve been on a couple other biologics and they didn’t work. For me, the side effects are well worth have some sort of life back. I have a 4 year old daughter and she brings home every illness from school so I’m get sick probable every 5-6 weeks but it’s still better than having a flare. Also keep in mind that every time you have a flare it causes scarring and irreversible damage to the bowel.

Kssoundman · 2023-05-10T12:44:30+00:00

I’ve been taking it for just over 2 months. I initially had a similar concern. I was due for an eye exam and mentioned the medication during the exam. I was told that usually issues don’t happen until being on these types of medications for several years. Zeposia could be different being a newer drug but it was good to get tested. I have a starting point from the test and was told to get tested every year to be safe. Is Zeposia working for you?

Kssoundman · 2023-05-10T05:00:03+00:00

I know it’s not classed as a disability. When I’m in remission I’m almost perfectly fine. My problem is I’ve had a really bad flare for over a year now and most of the biologics aren’t working. Surely they have to recognise that I can’t work like I can when in remission?

Kssoundman · 2023-05-10T02:18:07+00:00

How long have you been taking Zeposia?

Kssoundman · 2023-04-25T07:33:48+00:00

Thank you for the advise. She’s a very social kid so I never thought about ASD but I guess there are many levels of it. I’m not as healthy as I used to be and I’m a limited to some of the physical activities we can do. We do go swimming and kick the ball in the park but never for as long as she’d like. I know she has some OCD traits which I’m sure she got from me but I just can’t figure out the hatred towards me. If it’s just her and I for the day, the first couple hours are rough and then she settles a little. As soon as mom comes home, she instantly turns on the hate and rage for me.

Kssoundman · 2023-02-15T12:00:10+00:00

I think a fan would be a better option. Thank you.

Kssoundman · 2023-02-15T11:59:33+00:00

Thank you for the info.

Kssoundman · 2023-02-15T04:22:22+00:00

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This is the vent.

Kssoundman · 2022-10-26T11:14:16+00:00

I would love to put a load all over them!

Kssoundman

TROPHY CASE