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Recurrance after surgery in anastomosis

tonya_n_ky

Senior Member
Hi all. I just went Friday for a colonoscopy (ugh!!) I had surgery about 5 yrs ago and they removed all the bad intestine (Ileum). But low and behold this colonoscopy shows ulcerated mucosa present near where they resected the last time. I go the 25th for new meds and all those goodies. But in the meantime I'm wondering if anyone has been here and done this and what I need to expect. I've been very fatigued, muscle aches, joint pain, fever, you know...all the good stuff, for months now. ALso had some problems with lymph nodes under my arms (anyone else had problems with that?) I know I have a 50-50 chance of having surgery again. Since the first surgery I have had non stop diarrhea. I have a lot of problems too with dehydration. The colonoscopy also showed an anal fissure. Anywho... If anyone has had surgery and then had it come back, I'd love to hear from ya. The best meds out there now, things like that would also be helpful and appreciated. Some meds scare me with all the side effects. You feel worse than before u took them.
 
Good luck, I have never had surgery yet so I cant tell you my experience. It seems common though that people who have had surgery get another surgery sometime after due to the scar tissue.

Good luck and hugs
 
Aloha Tonya. I don't think you & I have exchanged messages before, but perhaps this is our time. :ysmile: I had a bowel resection twelve years ago & have also had non-stop diarrhea ever since. I also have all of the other symptoms you mentioned, except for fever. Food requires a certain lenght of bowel in order to digest. Given our shortened bowels, there's just not enough left for things to break down the way they should. With constant diarrhea, we're not absorbing enough good stuff to keep our bodies going, thus the joint pain, muscle fatigue, etc. I also have extremely dry skin and hair, and my nails are quite brittle & break or tear easily. I'm convinced that's all from the mal-absorption problems. My food goes through me so quickly that I can't extract the vitamins, minerals & nutrients I need. Dehydration: how could we not be dehydrated when we're spewing all day every day?

Has your doc given you a referral to a dietician (preferably one who knows a lot about bowel disorders?) You need to find out which foods work best for you, and a good multi-vitamin couldn't hurt. The good folks here can also tell you about various supplements and herbal remedies that have helped them (most docs don't want to discuss those.) I know that I can't digest fruits, vegetables or legumes at all unless they're cooked practically to mush. Whole grains, nuts & seeds ... no can do. Anything spicy is likely to cause hours of pain. And fats ... not enough bowel to break fats down, so that adds greatly to diarrhea & discomfort. I de-fat meats as much as possible, and live primarily on starches. Not an ideal diet, but it's what my body can handle.

Talk to your doc. Talk to a dietician. Talk to the folks here. It takes a little work, but you should be able to get some pointers as to what might work best for you!
 
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Skinsfan1229

Guest
Dont be scared of side effects. They are POSSIBLE. tylenol has side effects though.

Ive had the crohns come back everytime I've had surgery. and I've had 3 resections and 16 rectal abcessses and 5 abdominal abcesses.

So I take it you had only terminal illieum disease? So small bowel disease. then you mentioned there was mucosal ulceration ....that means UC not crohns, UC affects only the mucosal lining, crohns effects the entire lining.
 

tonya_n_ky

Senior Member
I have crohn's disease (small bowel)..They must have caught it before it has made it through the entire wall of intestine. Not so much scared of the side effects from "now" as those that can get me years from now. I've heard of so many that you take to fix one thing and end up hurting something else. I was asking so that when I go to my follow-up appt I may have a better idea of what would be best for me.
No skeet, I have never been to a dietician but it's something to look into. I do get B-12 infections monthly (2cc) and take multi vitamins. Thanks for the post =)
 
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ruthymg

Guest
Hi, Tonya, haven't chatted to you yet either. Mt names Ruth and I too have crohns. Ive had a bowel resection but only just (4 months ago) so Im afraid I can't offer much advice. Hope all works out for you tho.


Ruth
 
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ruthymg

Guest
crohns

Tonya,

If you've had a bowel resection, have you had a stoma before?

And with your crohns have you had any probs with fistulas?


Ruth
 

tonya_n_ky

Senior Member
Ruth,
Hi again. :) No, I didn't have a stoma. And so far no problems with fistulas, Thank Goodness. The first time around I was close to being obstructed so if I wouldn't have had the surgery when I did, it would have ended up being an emergency resection, that's what the surgeon told me before the surgery. I, like many, was bound and determined not to have surgery, thinking that the word "surgery" was the devil. But after the surgery and the recovery, I felt soooo much better. Now I'm waiting for round #2, lol. I guess with Crohn's it's an on again off again war. :ybatty: Until next time ~ Tonya
 
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ruthymg

Guest
Hi, Tonya,

You're lucky you haven't had fistulas. Looks like I'm destined to have several more of them. Haven't met many other people who suffer with fistulas, I know of a couple that have had vaginal fistulas (ouch!) but mine were perianal. If my research is right I think its about 30% of people with crohns that suffer with fistulas. I'm supposed to be trying infliximab/remicade its supposed to be good for fistulas. Not too sure though. What I need is someone who knows of a way to prevent them from coming back (probably impossible I fear). Oh well just have to face up to a future of further bum jokes!!!!


Ruth
 

tonya_n_ky

Senior Member
Ruth-
Hopefully the remicade will help, if that's the route u choose to take. I may be looking at starting remicade also. I go next Wed to see what my choices are going to be but the Dr had mentioned it before my colonoscopy. I'm not real sure of the benefits vs the risks. But I "have" heard that the results are usually good. That's one of my reason's for posting. (unsure about which meds I should go with).
I hope that the fistulas heal soon (and the stoma) and you feel better. Thankfully, I haven't had to deal with those but we never know what the future holds.
As far as "bum" jokes...I've learned to just go with it and have some good comebacks. Laughter "is" the best medicine in most cases. I do also have times where I feel l am the only person on earth going through this and that no one understands. Sometimes it's a hard thing to get past when it's the people who say they love you and you don't feel understood. I don't have the answers but hopefully knowing that someone feels that way and you're not the only one will help.
Either way, this forum is here for a reason...We're not alone. I think this disease needs a lot more publicity. It seems that no one has heard of it unless in some way they have been affected by it. And in most cases it took quite awhile to be diagnosed because of it being so "rare" , so to speak.
I'm rambling, lol...Anyways..Ruth, I enjoy talkin to ya and I hope you're feeling well and staying strong =)
 

Kev

Senior Member
Hey Tonya.. My disease has always recurred after surgery... However, I'm told (both by my personal physicians AND from the research I've done since) that surgery does offer benefits, sometimes even a cure (if you've got Diverticular Associtated Colitis). I think my recurrence was that I went thru a strictly surgical regime, and in retrospect, if I had the surgery followed immediately by the regimen I am currently on, my illness may not have recurred (at least to the extent it has).. But every case is different, OK? The point I'm trying to make, but failing at apparently, is that surgery is a viable and time honored tool in the battle of IBD, your doctors wouldn't recommend it unless it benefited your case.. and regardless of how many of us here relapsed after OUR particular surgery, you should not rule it out... If you are having second thoughts, or are fearful of another operation, it's wise to ask for a second opinion. And, don't rely on just the operation to overcome this illness. You need to add a regimen of drugs, diet, exercise & nutrition, etc. etc If you aren't consulting with an experienced IBD nutritionist, you need to start, OK?
 
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ruthymg

Guest
crohn's

Tonya,

that is soooo true. Everybody I've told about my crohns has said whats that?

I once had one extremely stupid and insensitive person jump in with their comment before I had chance to answer. Her comment was I quote "its when you have runny poos and you poo yourself" Yes, I wanted to hit her as well you can imagine. Some people are just plain ignorant. Anyway, I abstained and gave her a "shut up stupid!" look instead!! She definately got the homer of the week award that week.

It definately needs to be more publicised and I don't mean on just health web sites or medical journals. Like in newspapers, you know sometimes they have health sections in them (well they do in the UK) thats where it should be shown. I mean just about every household has a daily paper. Rant over ha ha ha


Ruth
 

tonya_n_ky

Senior Member
Hey Kev,
It's not so much that I am scared of surgery again. I remember how great I felt after I had the first one and whoa! I'd love to feel that way again, lol. It gave me my life back. But now that it's come back in the same place, I just wonder if this is going to mean another surgery or does it basically mean that I'm gonna get loaded up on drugs and fight it to see if I can get it under control. If another surgery is what it takes, then "give me some morphine" and let's go. And yes, I agree. I need to get a regimen of meds going and make some needed changes in my daily life help my own self and not let Crohn's over-take me. I am going to ask about being referred to a nutritionist when I go to my doc next week. Thanks for the post and take care
Tonya
 

tonya_n_ky

Senior Member
"its when you have runny poos and you poo yourself"


"YA THINK? You obviously have crohn's of the mouth!" woulda been my reply...lol. Yes, I agree, newspapers or something. They have those here, as well as, on the news. As a matter of fact, Shortly after I started having the symptoms at the very beginning of all of this, our local tv station did a report on crohn's for thier "health watch" I was like "wow, that sounds like me". I wrote it down on a piece of paper and put it in a "safe place" and when I went to the dr, the paper was still in the safe place and I couldn't remember the name of the disease (and couldn't find the safe place when I got home) LOL But when I was diagnosed 2 years later! I couldn't imagine that I had been right. But later found the paper put away where I had wrote 2 words "Crohn's Disease"

The morals to the story-
* Don't write things down and hide the paper from yourself.
* I am living proof that the more publicized it is , the more people will be aware of it and possibly be diagnosed sooner.
 
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ruthymg

Guest
lol, wish I had been that witty Tonya, was more shocked than anything, it amazes me how narrow monded some people are.

Talking of safe places, I do that with my appointment cards for the hospital and I still can't find them when I need them. I've had a bout 6 of the bloomin things. You'd think I would have learned by now !!!!


Ruth
 
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