Hi - I'm new here but not to Crohns

[Agility Gal]

Hi all,
Just joined the forum, but was diagnosed with Crohn's 22 yrs ago. I've had a few surgeries including 2 resections, and a temporary colostomy due to perforation( which was reversed after only a couple of months). All my surgery happened in my late 20's - within the first few years of my Crohns diagnosis. Since then I've been dealing with the ever present symptoms the latest of which is a lot of scar tissue and stricture. Gastro doc wants me to have a "strictureplasty" to break up the scar tissue, but I'm afraid. Afraid I won't heal properly or that down the line more scar tissue will form because of this surgery. I have little "control" now and don't want to make that worse. I've also been reading threads about weight gain.

Until recently I've never had much difficulty maintaining a healthy weight, but with my recent stricture and age related hormone changes, my whole metabolism seems to have changed and I've been putting on weight. Dieting with Crohn's is challenging. Exercising with Crohns is challenging when you have bowel control issues. I'd be thrilled if anyone had some solid coping advice of how to approach loosing weight or if anyone has had experience with a strictureplasty or scar tissue surgery with Crohns.

 

[Angrybird]

Hello and welcome to the forum :bigwave: it's great you have decided to join us. If you have not already, have a good look at our diet and sups sub forum, there will be a lot of info and advice for you to look at regarding both the food and fitness side of things.

Regarding surgery as you will already know from your previous ops that this increases the risk of scar tissue and the need for further surgical intervention. The plus this time is that the strictureplasty means all going well you don't actually lose anymore bowel. Have you had an issue with healing after your previous ops? Is that why you are concerned this time? I had a stricture cut out last year so this was a resection rather than plasty and for me it went really well (although I did have a major flare up 3 months later but that's just the nature of this disease so hey ho).

Also how long have you been dealing with the 'control' issues? Do you know on the previous ops how much bowel was taken out?

Do have a good nosy around as there is a great bunch of peope here with lots of advice and support. Wishing you well soon.

xxx

 

[Agility Gal]

Attn: Angry Bird - Strictureplasty

Thanks for the info. I'm sure I'll find more as I "nose around" as you say
My stricture(s) is/are in my rectum from stenosis and scar tissue. My control issues were likely worsened by a pre-Crohn's diagnosis hemorrhoidectomy. I had the beginnings of stricture/stenosis then and to *ease* my bowel movements they cut my sphincter muscle. (23yr old college student at the time) So now I can't muscularly *hold it* at all. Had they known I had Crohn's at that point, they likely would not have done that and maybe not even surgery at all. Was finally diagnosed when I was 27 - on the OR table. The only self discovered method to help me *hold it* has been to do a deep breathing/meditation type thing to quell the cramping and relax - laying down if possible (rarely). Not always successful or only successful for a short time. Can't lay down when you're driving! :blush:

So, I've had control issues for the 20+ years I've had Crohns. The current issue is that I vacillate between chronic diarrhea and bouts of constipation. With the stricture I have now - I can be unable to "pass" stool that is even mildly firm. I've been to the ER/admitted once for this, but have dealt with it many times but not gone to the ER. This too has created a real guessing game with my diet and such to get not too much fiber to firm up too much, but enough so that I can leave the house without having accidents.

As far as the resections - I believe it is around 7' they removed total, including the terminal ilium. I'm on B12 injections monthly but other than some prednisone, Pentassa, and Asulfadine in the very early years, I've been med free for over 16yrs. I'm not scared of the surgery or not healing - but not healing well, causing more scar tissue and having no choice but a permanent ostomy. Really would like to have the confidence to pursue more activities and it does affect my ability to do well in my job - which includes client presentations and visits. If my control issues were to get worse - I'm not sure if I'd be able to keep doing my job. I don't want to rely on my husbands income, and I know it is very difficult to get SS Disability with Crohns and I really don't WANT to go on disability if I can help it - even if I did qualify.

 

[Angrybird]

I see, I apologise for my ignorance with this but is there no procedure that can be done to tighten the muscle for you a bit? It seems strange that will all the things that CAN be done in the medical world that they cannot help with this.

Have you got an appt coming up to discuss the strictureplasty with a surgeon at all?

 

[Agility Gal]

Strictureplasty

I've not been told by my surgeon or gastroenterologists that re-attaching or tightening that muscle is an option. And, the fact remains that the narrow canal probably means that they wouldn't want to do that anyway. I've seen both docs twice thus far about the issue.

 

[David]

Hi there and welcome I'm so glad you joined

I think you have some hard decisions to make. One thing that may be affecting your weight is your intestinal motility due to the stricture. That everything is being slowed down can lead to bacterial overgrowth which can lead to problems with metabolism and cascading effects from there.

Are there any reasons you would NOT get the strictureplasty?

Oh, and the procedure to redo your sphincter muscle is called a sphincteroplasty. There's some really innovative procedures they're doing these days.

One last thing... you may want to do a little research here.

 

[Agility Gal]

Strictureplasty

David, thank you for your post! I've been wondering if the motility had caused some changes because I've never held food in my system this long before. More time to absorb calories, fats, sugars I'm sure! I'm going to try to reduce and/or eliminate a lot of the carbs that have been a mainstay of my diet. I turned to carbs a long time ago, as the only thing that would "stay with me" and not cause abdominal distress. As I age, I'm sure that is not a good choice any longer and it's going to be hard to change my mindset and habits but I will definitely try. As the chief cook for my husband and I, I will need to focus both on his and my diet needs which are unfortunately very different.

I'm already seeing a few more posts that offer some good tips so I'll keep watching! I was going to see a registered dietician a few months ago, when I found out that they are not covered by our insurance. I had so many other recent Dr. Bills & copays that I put if off. I'll have to investigate those costs again and see if I can't get some specific help that way. Or, perhaps I will find enough info through folks here that it will not be necessary. Thanks again! :Flower:

 

[David]

I'm not sure that it is so much more time to absorb stuff as more time for bad bacteria to establish themselves and the problems that arise from that. Give this a read: SIBO

And if you're interested in cutting down carbs (I think that's a good place to start) you may want to look into the Specific Carbohydrate Diet as they've systemized it.