Fissures, Fistulas and Digestive Enzymes vs a Colostomy = Help Needed!

I've posted about this topic before but now I have different questions so forgive me if this is a repeat for some.

To start out...I'm 4 years post op with my DS. I have gotten to goal and done well with keeping up on eating/drinking/exercising and vites.

About a year post op my health took a turn for the worse. I happened to be one of the unfortunate ones that didn't do well with surgery (newbies don't let this scare you! We are ALL very different!). I was having a hard time with EVERYthing...couldn't keep food, vites or water down. Ended up losing far too much weight and got put on TPN for three months. After that much of my issues improved...however I developed anal fissures. These fissures have since ruled my life for the last three years. For anyone that doesn't know....a fissure is the equivalent of a papercut in your anus. While that sounds tolerable I assure you its the worst pain imaginable!

During these three years I have seen a total of six colorectal surgeons who have literally tried every possible remedy with zero success. I have had THREE sphincterotomies, a round of botox (I begged them to fix my other wrinkles while they had it out but I didn't get far with that), steroid injections, every single topical cream or ointment on the market, valium, vicodin, percocet, dilaudid....you name it, we tried it. So during this I developed an absess and fistula which is now being treated with a seton drain.

Ok, finally getting to my questions now. My surgeon first wanted me to go back on TPN to see if eliminating real food all together (I already eat a VERY bland diet as a result of this) would help but another colorectal surgeon convinced him it was useless. Together they suggested doing a month of digestive enzymes to see what it does (again being a guinea pig) since they don't know what to do with me. The medication alone will cost me over $1000 per month. Their last and final recommendation is a colostomy bag. NOT a very attractive thought being as I'm only 34! During this process they have also decided not to give me more pain medication since I have been taking it for so long. I also struggle with getting them to realize I absorb pain meds differently than "normies".

Does anyone at all have any experience with digestive enzymes? I know it will make me gain weight and I'm unable to exetcise due to the pain of everything else! I'm desperate here

I'm so sorry you're going through all this. I wish I could offer some knowledge but I haven't had any experience with digestive enzymes. Have you also posted this on the larger more active Facebook groups? I think there are a couple of folks dealing with similar issues.

--gina

 

Apparently I'm behind in the times lol. I didn't even think about DS groups on Facebook! Thanks for the suggestion!!

Also Proboards may be a resource. Let me know if you need the links.

--gina

Courtney,

I think KJ on the Fb OH group has dealt with this issue.  She may have some advice for you.  Sorry to hear you are going through this.  Hang in there!  

Oh, Courtney, what a miserable time you have had!  I feel for ya.  You have big big decisions to make.  Are they talking permanent colostomy?  Or temporary, to give your ass time to heal?  That could be a decision maker.

Right now they are talking temporary colostomy to let things heal but two of the surgeons did say that it would almost certainly become permanent because the tissue in the area is so fragile that it cracks and crumbles whenever they try to do anything. They have also said that I almost certainly have Crohns Disease even though all tests thus far have come back negative. So of course I'm terrified to let them doit temporarily since I know I will probably never get rid of it.

Then, it's a quality of life issue.  You're so young to have to make such a weighty decision, but then again, you're so young and have so much life ahead of you!  And you deserve to feel good!  I have dealt with anal fissures, though not of your magnitude, obviously, and they are so effing painful.  I don't even have anything to compare it to.

For what it's worth, I have been a nurse for a very long time, and I have never heard of a temporary colostomy becoming permanent.  They are 2 different surgeries, so I would get that clarified, before you sign any consents.

Are you on the proboards forum?  You could probably glean a lot of info from the vets there, as well.

The only thing I can point you to is the page on fissures on DSfacts here http://www.dsfacts.com/anal-fissure.html

Sorry if you're already past this stage.  Please keep us posted on how you do and I really hope you find some relief for your suffering - sending you warm healing vibes from across the pond.

I know I would do almost anything to avoid a permanent colostomy.  Do you know how much of your colon is in bad shape or would have to be removed to attach good tissue to your sphincter?

I'm wishing you the best!