New to ileostomy - support belts

[Sifu]

Hi all,

I'm a new user here but have been reading a while. Quick intro - I'm a 24y/o male and have had Crohns for 6yrs and have been on aza, infliximab, humira, vedolizumab.. biologics no longer seem to work and my colon was pretty badly inflamed so my Dr. said that surgery was the right thing to do.

I'm now 2.5 weeks post sub-total colectomy.. all seems to be going well so far except I seemed to have developed a 'peristomal fistula' which is in an awkward position and is outputting stool which makes me at more risk of leakage and is pretty depressing will be seeing the nurse/surgeon in two days for a checkup and will flag this up.

However, this post was more to look for recommendations on support belts to prevent hernia/prolapse which I am terrified about. Having read around I am reading a lot about Nu-Hope producs and Comfizz products and wondering if anybody has had any experience with these? or if there are any other brands I should look into? I am based in the UK - have contacted Comfizz and they are doing a promotion at the moment as they are running a campaign regarding prevention of hernias and they will be sending me a free belt (of some sort which I don't know right now) for anybody who is interested

Thanks in advance for any help! will probably have more questions down the line and grateful for any knowledge shared!

 

[glum chump]

Hi Sifu

Welcome to stoma world! I'm sorry that you've got a peristomal fistula to deal with...I hope the surgeon/nurse are able to figure it all out and give you some good advice.

Like you, I was also really worried about a hernia. Keep in mind not to bend too much, and in particular, don't lift heavy stuff!! This is really important. They probably told you not to drive for about six weeks...again, these are all really critical to not getting a hernia. Be careful with everyday activities, like vacuuming, carrying groceries, lifting a chubby cat, etc!

I tried using a belt -- I think I used a Hollister belt...I didn't really like it. In the first three months, I just made sure to empty my bag quite often (as soon as it was a third way full). I also found it easier to shift to men's boxer briefs and short lycra bicycle shorts because I liked how it kept my bag closer to my body and kept it secure rather than flopping about all over the place. I'm female, and this was especially important if i was wearing a skirt or dress.

Perhaps someone will come by who has actually used a belt and can offer you better advice around the belt.

I hope you've met with the surgeon, and are on the road to mending with your fistula!

All the best,

Kismet

 

[Ki3]

Hi and welcome! I had a temporary ileostomy for a year and although I didnt ever have hernias, I did not go a day without a comfizz support belt on, they were an absoloute live saver!! I had about 4 of them, the only issue I ever had was I felt they needed more sizes as a child large was too tight but the adult small was looser than id have liked, but I still loved them and used them daily, they were the best at making my bags last longer as it kind of holds the bag to your side, so even if the bag starts to get a bit full, the belts stop the flange from pulling away from your skin. And of course it makes the bag flatten so its invisible through clothes so nobody knows!

They also offer vests and underwear, I never felt the need to try these as I was happy with the belts, but sometimes they did roll up or fall down so if you find that an issue then underwear/vests might work better

I tried other brands but comfizz was by far my favourite. I wore them 24/7. Under my school uniform, under my clothes, I even wore it overnight to help prevent leaks in my sleep, and even wore it under my swimming costume! Cant reccomend them enough

you'd think they sponsored me or something :') but no, just really love them!

 

[Sifu]

Thanks for the advice Kismet!

Ki3 my nurse had also ordered me a level 1 support belt from comfizz and I agree they are comfy!

I have managed to try some belts and if anyone would like more info please PM me as I struggled to find this info looking for comparisons on forums.

A quick update.. my stoma was pretty messed up, there was 360 degrees separation from the skin (something about the stitches dissolving too early), yes there was a fistula at about 11oclock position looking face on and there was granulomas around the stoma base.. so I had everything really. But don't panic! They said if I just had the granuloma and separation it could be managed with products from the stoma nurse and avoid further surgery. They said I was extremely unlucky to have the fistula as it is a very rare complication and they didnt seem convinced it had anything to do with the crohns (as I was worried if I may develop more!)

The stoma nurse and surgeon agreed that I needed a stoma revision surgery and I have had the surgery just 3 weeks post original sub-total colectomy. The operation was supposed to take 60mins and was supposed to be a local incision to the stoma site, but it was more complicated than they expected and took 2hrs as they had to go in the original laproscopic site with a camera to check things. The surgery went well and they seemed to have sorted out all the problems and the surgeon is happy with the result. This time they put a combination of dissolvable and more rigid stiches in to ensure better healing. I was out of hospital after 5 days (same as original operation) and pain was not as bad as the original surgery!

Fingers crossed I don't get any more complications and it heals nicely. I hope this helps anyone in a similar situation and I will keep posting further updates.

Ps if any young ileos in or around London pleaseee PM me as I feel quite lonely with this!!

Kind regardss
Sifu

 

[Tony H]

great that you got it sorted it Sifu , hope its all plain sailing from here on in , theres a lot of UK users on here who might point you towards support groups in your area , and you can always have a chat on here esp if you are feeling down or lonely , there is always someone around,
http://www.crohnsforum.com/showthread.php?p=962085#post962085
thats the best thread if you want to have a chat ,and introduce yourself

http://www.crohnsforum.com/forumdisplay.php?f=5

if you feel like it , everyone here is really friendly and supportive , welcome to the forum

Tony