New to forum. .

[CAM477]

Hi!!
I was diagnosed with Crohns 18 years ago @ age 19, & the operations started soon after when all medicines tried & failed.
By 21 I had all large & a good chunk of small bowel removed & was left wth a permanent ileostomy. ... (didn't deal too well with that one... who am I kidding... didn't deal with it all)

I fell pregnant @ 23 & while pregnant, health was fantastic, after however was a different story.. instead of being with my son, I got to see the inside of an operating room again....

& again

& again...

6 years ago I was put on Remicade Imfliximab which has helped, but I had begun to have trouble with my rectal stump. ... Chronic back pain, bleeding & that constant feeling of 'needing to go' (when I dont even use it) was getting the better of me so the decision was made to have it removed, which happened Dec. 2013...
I found the surgery brutal, & recovery seemed endless due to complications.... it's now been 11 months & the anal wound still hasn't healed... which is now getting frustrating...
Both my gastro & surgeon say that it is longer than usual, but it's clean & is closing... they are gonna keep an eye on it over next few mths......
Has anyone else had this surgery? How long was ur recovery?

It is thought by my gastro that maybe the remicade is delaying the healing..... ?

Who knows! ! What I do know is, I'm sick of wearing pads..

Thanx for reading.

 

[Grumbletum]

Hi Cam
And a great big welcome to the forum. I feel very sad reading your story. You have been through so much at a young age :-( I've not had an ileostomy myself but there are many here who have and I am sure they will be along soon. Sometimes the forum is quiet at the weekends.

 

[DJW]

Hi and welcome.

Sorry its taking so long to heal. I had that surgery many years ago. They left it open and packed it everyday. I do remembering it taking a long time to heal. I even resorted to open the bedroom window and laying on the bed with no gauze, packing, or pads so the air could get at it.

Hang in their. Sending you my support.

 

[Cross-stitch gal]

Welcome to the forum! I'm sorry to hear all you've been going through. I'm afraid I have nothing to offer except to send you a whole lot of hugs. However, I do have a good friend of mine who's been through a lot of challenges and surgeries lately. I'd like to tag in afidz. She may have some ideas and/or be a wonderful person to talk with. Hang in there. We're here for ya.

 

[afidz]

Hello and welcome!
I am sorry to read of what brought you here, but I am glad that you found us!
I have had a lot of surgeries, just not specifically what you have gone through, but I am very familiar with non-healing wounds.
I am unfamiliar with how the health system works in Australia, but if I were you I would try to get a referral to a wound care center. Those doctors are specially trained in healing wounds and they have access (at least in the US) to treatments that other doctors don't. If you haven't already, increase your protein intake, that usually helps healing as well.
Hope this helps

 

[Catherine]

Welcome to the forum.

Are you being seen at a GI clinic at a major hospital?

Paging Stefan. as believe they are in South Australia. I think DustyKat know a lot about wound management.

 

[CAM477]

Thanx for replies. .
Our medical system here is pretty good & I know I gt well looked after.. I trust my docs completely.
Ive done all the usuals for wound care especially salt baths.
I have just been cleared to go back swinming more so the beach & with our summer starting im keen to go boogie boarding so bring it on. ..
The saltwater should do good..
Im glad I have found this forum....
& thanx again

 

[stefan]

Hi and welcome Cam, and thanks for the tag Catherine,

Yes we are lucky we do have a very good health system here in SA, and there are several good IBD clinics around the state, most notably the RAH managed by Prof Jane Andrews and FMC I believe now under Dr Reme Mountifield since A/Prof Peter Bampton's migration to research. Both Reme & Jane have a particular interest in the womens health side of things too.

Sorry surgical and wound care is a bit out of my area of expertise, but I heard saltwater baths are still one of the best treatments!

Feel free to let me know if you have any local questions, I also help facilitate the Crohn's and Colitis Australia support group that meets in the Adelaide CBD every month if you're interested.

All the best,

Stefan

 

[DustyKat]

I’m sorry for the late reply CAM477, I have been away.

You surely have been through a lot! :ghug:

What complications have you had that delayed your recovery?

Since you have an ileostomy do you know what your vitamin and mineral levels are? Particularly Protein, Iron Stores, B12, Vit D, Vit C, Magnesium and Zinc. If you haven’t been tested lately I would go to the GP and have a request for the bloods to be done.

I personally don’t think that the Remicade is the culprit in the slow wound healing but rather would lean toward dietary deficiencies as the cause. Perhaps if suitable start consuming something like Resource Protein once a day:

It comes in a variety of forms: milk or juice based that a ready made like the image above or you can get a tin in powdered form. I don’t imagine they would be problematic with a the type of stoma you have but if in doubt I would check with the community stoma nurse or dietician.

As to the wound itself, it is good that it is clear of infection and healing, albeit it slowly. Sitz (salt) baths are certainly the best when dealing with anal wounds and no doubt this has helped in keeping the area clean. The ocean will certainly be beneficial here as well. unfortunately I don’t think there is anything else you can do from the wound dressing side of things but I would definitely look into any deficiencies that may be adding to the problem and add protein drink into the mix and see if it makes a difference.

If you do get the bloods done or already have results at hand would you mind posting them here?

Good luck and welcome aboard!

Dusty. xxx

 

[CAM477]

Hi, thanx for reply... after I had my stump removed & sewn up I got a blood clot so they opend it & I had it packed for weeks & it would get smaller then get bigger.. then I ended up with 2 holes... they were seperated by a thin bit of skin which eventually broke & ended up being one hole again... it's not causing me any pain, its just becoming a pain in the arse. . (Sorry had to go there lol!)
Cheers for the heads up re: blood test I shall speak to my doc... he has always been right on top of things when they are low, ive been told to take vitamin D after my bone density test came back on the low side to obsorb the calcium or something.. & I do take a Berrocca everyday
Definitely will up the protein anyway cant hurt.
Thanx again!

 

[DustyKat]

I can well understand that it is a pain the arse! :eek2: :lol:

Just my personal thoughts here but I don’t go much on multi vitamins as they don’t tend to meet specific needs well enough but your experience may be different.

I would be interested to know what your levels are.

Dusty. xxx