I'm new here, and have question about stricture

[bela]

Hello All. I am new here, and found this site today. Just this morning, I told my husband I wish there was a forum, and how lucky to find this place.
I have crohn's and my terminal ileum removed in 2003 due to a stricture from the crohns. I have had to have colonoscopies every year, and while no sign of crohns, they just found another stricture. I go in for another test to see what's above the stricture - crohns or scar tissue. Either way I am so worried that I'm not sleeping and can't stop thinking about it. My surgery was extremely difficult just becuase I was so thin by the time I had it that the thought of having another has me worried and scared. Does anyone else out there have a stricture and live okay with it?? :sign0085:

 

[Kev]

Hi Bela. Welcome. I don't have any advice or opinion on 'strictures', but I'm sure anyone here who has any help to give will post a reply (may take a while, the site
has been abnormally quiet lately - think it's a summer time issue). I can offer you the following... take it or leave it for what it's worth. (WARNING! I'm long winded)

My father's father died relatively young (61) from cancer. It really affected my Dad.
He fixated on cancer... spent his life from then on worrying that he would follow in his father's footsteps. It not only had a negative impact on him, but on all of our lives. It was hard for us kids to watch the way that it consumed him. Otherwise, he was a great guy, full of fun, a joy to be around. Kids from everywhere would just naturally gravitate to him... like he was this giant father magnet. They didn't see him pouring over the obits everyday, noting the people who died from cancer.
Eventually, cancer did strike. He got ill one Christmas, died 6 months later. He was 81... But I think the worst part was that he lived in fear for decades BEFORE he had any reason to fear... He allowed this fear in for 40+ years without cancer.

My mother, on the other hand, is and remains the optimist... When I was seven, the doctors told her that she had less than 6 months (again, it was cancer). She surprised everyone ... Over the years, she has had several major operations, and
she still soldiers on. Last year, she underwent major surgery to save her life. The doctors told her she had less than a 5% chance of survival, but they were forced to operate otherwise she wouldn't last the week. Depsite being in her 80's, and having a heart condition, asthma, emphysema, diabetes and anemia, etc., etc.. it was a case of soldiering on. Again, she pulled thru with flying colors. I (and Dr's.)
dunno how/why!!! This past November, she had 2 heart operations back to back.
Again.. flying colors. Why? I think that it's because she is an eternal optimist, and
just soldiers on. Hey, if it works for her, I'm sure it can work for the rest of us, AND
it sure beats my Dad's approach. Or, maybe it's just as simple as accepting that: "What will be, will be. And in the meantime, dont' worry, be happy" I dunno.

Anyway, I'm not trying to trivialize your fears or worries. God knows it takes great strength to state them publically. I also know from personal experience that having someone who isn't in your shoes say 'don't worry about it' doesn't help. It didn't help me... until I forced myself to accept that worrying over it would
have absolutely no positive affect on my illness whereas trying my moms approach
certainly couldn't hurt. It didn't. it helped me thru 3 ops in the last 16 months, OK

 

[bela]

Kev,
Thank you so very much for posting your response. I really appreciate that you took the time to write such a great response, and I enjoyed reading the post. I realized after my first post, that my worrying is triggering the 'fight or flight' response, and it's not helping me. I don't sleep, then my joints hurt, and then I worry more and it turns into a viscious cycle. I recently heard a psychologist speak to a group with chronic illness, and he explained that our thoughts can trigger the 'fight or flight' response, which can make us feel worse. I know that our thoughts don't cause our disease, but I do know that my thoughts affect my feelings, and can make my symptoms worse if I'm stressed.
Again, thank you so much for writing and support. I am going to exercise tomorrow and try to get my thoughts in a better place so that I am putting my energy elsewhere.
I'm so sorry that you've had to have 3 surgeries in 16 months. That is a lot to go through. How are you now? Thanks again.

 

[Tia]

Hi Bela

I did have a stricture for quite some time. Last year it really began to cause me trouble. In december I had a colonoscopy and they did a balloon dialtion of the stricture, which I have heard from others can be a good thing! Unfortunately for me I obstructed a week or so later . . . which I waited out and it did clear thankfully without intervention (and I know it is not a good idea to wait it out!!!) I ended up with a full obstriction in April and had an emergency resection . . . not nice!!

Be careful with strictures. Be aware of what an obstruction could feel like (painful, no bowel sounds, vomiting, bloating) as they can be dangerous.

Good luck!!

Tia

 

[Jeff D.]

Hey Bela,

I had a stricture when I was first diagnosed. The stricture closed to about the size of a shoe string. Since I was fourteen at the time, seventeen now, my doctor did not want to make me go through the stresses of surgery so he prescribed me flagyl, prednisone, and acidopholous(is that spelled right). Anyways I am almost perfect three years later. My stricture some how opened up when I was in the hospital. Graphic image: I was put on miralax treatment, five hours of miralax every fifteen minutes, since I did not go to the bathroom for a month or so. When I pooped I had a three foot by two inch crap on the bed because I could not move off the bed. Now I am better. I have no sign of Crohn's and my stricture is so small it is almost nonexistent.

I just wanted to show you a story that you do not need to worry too much about it. When I started worrying myself last year because I had a flare I got so depressed. I wanted to die. After sorting my life out and my priorities I told myself I should go with the flow. Ever since then my body and mind have worked to make myself heal.

Good luck to you and hugs

 

[Kev]

Bela

Thanks for asking. My current condition is that I'm not stable, not in remission, but (except for the ever so often relapse) I'm gradually improving. I'm having a much better year this year than last... And best of all, I heard about & joined this site.

Thanks again

Kev

 

[mikeyarmo]

That was a great story Kev!

Bela...

strictures can be dealt with for usually a long period of time, if you are willing to make the necessary changes. You may need to go onto a total liquide diet, as the stricture may be too small to let anything through. This usually causes a problem with getting enough nutrition, and as inflammation may also cause mal nutrition maintaining a healthy weight is a problem. You will likely need to drink about 8 bottles of an ensure/boost drink, and I know for me I was having trouble getting 6 in (and eventually it seemed like I could only tolerate 3). That meant I was losing weight, and could not continue.

This means eventually I had to get the stricture removed (resection), but before I did I was on TPN in the hospital for 2 weeks.

Liquid diets are not fun or easy (especially when you are on prednisone also). You will likely be very tired, have a "foggy head" and not be able to continue normal activities.

A resection can alleviate the pain, allow a faster recovery if you get it done while healthier/more weight and is really not that bad. The positive attitude really I think makes a difference. I went into the surgery telling myself I would be home in 7 days, eating in 3. That is exactly what happened. I walked a lot, and did all I could to make myself recover well.

On the other hand my roommate had the same surgery as me, right before I did. He stayed in bed a lot, did as little walking as he could get away with, and was in an overall bad mood. He was in the hospital 3X as long as I was, as he had many complications. He was not even able to eat food till well after the first week. He was throwing up, and just lying in bed complaining about the pain (which I no longer really had after the second day). I am not saying he was in total control of everything that happened, but I think he may not have had that much of a positive attitude about it.

You for now just should do whatever makes you feel best. If the stricture is not too bad, you can continue living life. Remicade can be good at reducing strictures due to inflammation, but if you have one from scar tissue (like me) than I believe surgery is the only option.

Good luck with whatever you decide and THINK POSITIVELY!

 

[chevelle6d6]

Hi, new here myself. have crohns in the small intestines and have bowel blockages many times a year. have one today infact. in bed and on prednisone and pain killers and ice, waiting for the bowel noise. Lots of pain and destention. getting some noise now and pain is lessing therefore i am posting. Strictures, i do not know if i have but had surgery 18 yr ago to remove 3 foot of my s intestine, so i am sure i have some. the strictures are dangerous because they may cause blockages. which i am aquited with, and God willing have always waited them out. Strictures will not respond to medication, so the only option is to remove them which may cause more. with many of us who have had surgery blockages are a combination of both inflamation (flare) and scar tissue. The flare can be controlled, with me i use omnicor (rx fish oil)to keep the inflamation down and prednisone on flares. Strictures can also form from lots of flares and continued inflammation. when blocked i manage them with ice on the blockage, prednisone (very short burst) pain killers and pray alot. if not resolved in 24hr i think about going to the hospital. this is all just my situation, where the blockage and strictures are and how severe they are makes everyones different some anyway. good luck, God bless.


chuck
ps pray for a cure.

 

[mikeyarmo]

Thanks for sharing, chevelle6d6. I think that taking fish oil may be somewhat helpful, but I know that if it comes to actually being in a flair it really seems like going on pred is the best for short-term relief.

 

[Mickeyg]

I have a stricture and live with it b/c I don't want to have surgery. It acts up of months and then it goes away and then starts all over again. I have learned to chew my food really really well and avoid all roughage and steak (bummer!). These seem to be my trigger foods along with stuffing myself full! I also will self-medicate with prednisone to make me feel better, don't know if it works on the stricture or my brain! My Dr. doesn't think it works on the stricture but it helps me get over it. I will have sugery when my quality of life drops really low but as for now I can work, chase my kids and exercise so I am not complaining.

Good luck,

Mickey

 

[xrayzerase]

mike-
i know this is an older post/reply..but-well-this whole site is really so amazing..and i still thank you for letting me know about it...
anyway: i just wanted to say-your reply here (on thinking postitively) really made me feel better just now..
it is so easy to get down about things..
but..i think i will print this just as a good reminder when i feel like things are not as good...
andrea
ps: oops--i realize i didnt add to this:
hi bela -i am pretty new here-but-i know how easy it is to get down with this (crohn's)-but-there are always good days/ times too..thats how i am trying to look at it-especially when i feel really bad and sad/upset about it all..anyway-just-"hi"

 

[Cara Fusinato]

Hi! I have strictures. Basically, when they found them, I was so inflamed and narrowed that I could eat nothing but soup and pudding and ensure. It was so bad they couldn't get the colonoscopy scope through to see. That lasted 8 weeks. Pentasa, Entocort, and VSL#3 (bacteria mix) got me through. Then, I ate a vege salad. 2 week flare-up. Since the, Ihave found what works for me (XanGo Mangosteen Juice) and have gotten off the meds. My strictures seem to have opened some, or become more flexible, or whatever it may be, but it means my r.room habits are more normal. I still chew food really, really well, don't eat huge meals, and stay away from fuits, veges, and fiber. I have been managing just fine now since my dianosis in April. Hang in there and work with the docs to find what works for you. If your doc doesn't work for you, find a new doc that you are comfortable with. One can live quite some time with strictures successfully.

 

[Kate]

Hi Bela

I dont have a strictuer yet but am told its a matter of time. But i am here to say welcome to the site and hope things look better in the near future

All the best
Kate

 

[meowsie]

Hi guys. I had a stricture that built up over about 4 years. Once I was finally diagnosed back in April, they sent me directly to surgery b/c it was so blocked. Now all is well again (for now). I can eat again and actually have a life. It's pretty cool. I don't recommend living w/ a stricture. Can be dangerous if it decides to rupture. Tread carefully, my friend.