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Crohn's Disease Forum » Surgery » Large Intestine Stricture removal Crohn's Colitis


10-01-2016, 12:05 PM   #1
jcashen87
 
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Large Intestine Stricture removal Crohn's Colitis

Hello all, I was diagnosed about a month ad a half ago after at least 5 years of pain and discomfort. I started seeing my PCP about it about 4 years ago and was told basically it was stress and IBS. Finally after demanding a referral to a GI which admittedly I should have done sooner. Sometimes it is too easy to just try and trust your Dr. Always listen to your own body is what i have learned.

Upon my first colonoscopy they couldn't get past a stricture about 1/3rd of the way through my transverse colon. My GI said that he felt this was made up of scar tissue and he felt i was a candidate for surgery and referred me to a colorectal surgeon. I met with the surgeon and he said since I was just diagnosed maybe we should try some treatment first and see if there was inflammation that could be reduced and the scar tissue could become liveable.

So back to my GI who put me on 40MG of prednisone. I am still on it after a month and on a CT scan, i had an area of some concern right in the beginning of the colon where the small intestine dumps out. It doesn't look anything like the stricture as far as how thickened the walls are, but both my surgeon and GI Dr, said they want to look at it with a scope. So my GI Dr scheduled me for another colonoscopy in 3 weeks and wants me to stay on the prednisone, he is going to use a ped scope and hope with combined efforts of smaller scope and being on prednisone he will be able to pass the stricture and get to the beg of the colon to look at this other area before scheduling surgery.

I really didn't want to be on prednisone this long, it has made me feel better in some ways, immediately my joint pain is pretty much gone. I am still waking up because of the gut pain throughout the night though. The pain of stool going through that stricture is just unbearable. This past 3-4 months I have noticed a smaller distinct pain in my Lower right ab. Maybe the beginning of my colon??

I have been on opiate pain meds for 7 years maintenance and this does not touch the pain. I feel like surgery might be the only way. GI says scar tissue, Surgeon said its hard to say how much is scar tissue thats why he wanted to at least try and reduce inflammation with meds and see how it went.

I have a lot of people in my life and people that I have crossed paths with recently that take a natural approach to things. All of them urge me to wait on surgery pretty much and be weary of medications. My wife and I don't share these same sentiments. I admittedly think I do need to eat better though, I eat fatty stuff trying to gain weight, I don't feel like i eat healthily. I am open to any of the forums suggestions on diet they have used to help with strictures and crohns colitis.

I understand once there is scar tissue also surgery seems to be the only real solution. I don't want to be in chronic pain anymore. I want to taper off the prednisone sooner than later and now I will be on it at least 2 1/2 months if I start tapering right after the colonoscopy.

If anyone has had success with bettering their symptoms leading up to surgery or any advice on how to best get through this I really appreciate it. Thanks and sorry for the long winded rant.
10-01-2016, 03:07 PM   #2
ronroush7
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Hi. Have you tried a food diary to see what foods upset your system? You might need to be on more than prednisone . The title said something about Crohns Colitis. I would ask your doctor first but I have Crohns Colitis and the doctor has me on Lialda.
10-01-2016, 08:25 PM   #3
my little penguin
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The small area where the small intestine and large intestine meet is the terminal ileum which is fairly common with crohns to be inflamed
Prednisone is fairly common to be used in crohns since it can reduce the inflammation but obviuosly won't get rid of scar tissue but can stop new scar tissue from forming
It isn't used long term as in years but has been used. By most crohns patients for maintence meds they need some merging else such as an immunosuppressants and or biologic

Food won't cause a flare but some foods can make it worse
That is very individual thing
Going to tag clash her ds had a resection
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10-01-2016, 10:43 PM   #4
jcashen87
 
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I am also on Lialda as well, forgot to mention that. The last two days I have been in pain during the day where as recently on the prednisone the pain has been mostly just at night. That is when I feel my stool is pushing through that stricture as I always have bowel movements in the morning. Being on opiod maintenance meds it slows my system down where I usually only go in the AM. It's one of the reasons my PCP was reluctant to ever think IBD. Because he said since I didn't have diahreea which is so stupid of him anyway as not everyone has diarrhea.

Anyway hopefully the prednisone is stopping this stricture from getting worse although my pain is at all time high even in the prednisone. I feel it's time to get it removed, my GI felt it was scar tissue and it sure feels like that especially if prednisone hasn't helped it open up of it were to be inflammation and not scar tissue. I wonder now if they can get through the stricture what they are going to find at the beginning of my colon. My small bowel look d good on the CT scan. The surgeon said it looked good but the other area that looked a little inflamed was at the start of the large bowel.

Thanks for all your help, you are all so kind and have helped me greatly in coping with this.
10-03-2016, 08:02 AM   #5
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Maybe ask your doctor for a referral to a dietitian or nutritionist to work with you on the diet front and help create a meal plan. It's something to talk about with your doctor at least to get their opinion. Your local chapter of CCFA might be able to point you in the direction of someone too.

If you do begin to explore surgery more, you might also consider getting a second opinion to get more information and feel confident about making that choice.
10-03-2016, 08:08 AM   #6
ronroush7
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Maybe ask your doctor for a referral to a dietitian or nutritionist to work with you on the diet front and help create a meal plan. It's something to talk about with your doctor at least to get their opinion. Your local chapter of CCFA might be able to point you in the direction of someone too.

If you do begin to explore surgery more, you might also consider getting a second opinion to get more information and feel confident about making that choice.
Amen

10-04-2016, 05:18 PM   #7
Cat-a-Tonic
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A few people have mentioned Lialda - I'm on Lialda as well. It's not the best medicine for Crohn's and probably isn't doing a whole lot to help you. It's one of the mildest meds, and it only affects the top layer of intestine, it's sort of like putting a lotion on your skin. But, Crohn's can affect all layers of the bowel, so putting medicine on just one layer typically doesn't do much. Lialda didn't keep me from flaring, and I'm currently investigating my other med options as I taper down on prednisone myself (I'm hoping to try LDN, waiting on my GI's response to that).
10-21-2016, 11:43 AM   #8
jcashen87
 
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I had my second colonoscopy yesterday to try and get past my stricture with a pediatric scope and hoping the prednisone would have reduced some inflammation to help my GI traverse the stricture. Well it didn't work, my GI said it should be around 5cm where my stricture is and the pediatric scope I believe (little foggy due to anesthetics) is 9mm. He said he gave it a little water and hoped he could glide through but couldn't push it.

He did say he "tattooed" the area for my surgeon though, so now wer are definitely moving to surgery for a removal of this stricture, then we will have another scope to see the rest of my colon and the area at the beginning where the ileum ends that looked possibly a bit inflammed on my CT scan. I felt so much stronger going into and out of this scope though I was so anemic and weak during my first one which ended up being my long awaited diagnosis of Crohns. I think the Prednisone has helped with my energy and most likely stopping the other areas of my colon getting inflammed and/or bleeding. Now I think I will start tapering and getting ready for surgery. Wish me luck guys!

Would love to hear about anyone getting strictures removed, especially in the large intestine like I am going to have if anyone has any stories/feedback/advice.

Thanks!
01-05-2017, 08:46 PM   #9
jcashen87
 
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Update, I got off prednisone to have surgery. They scheduled me for February 15. I may have to get my wisdom teeth pulled before. My dr gave me entocort for a couple weeks if I need it before surgery and said I could get off in a week. I ordered it and now read it may cost an arm and a leg and since my symptoms aren't super horrible I may just cancel and tough it out to surgery.

My GI is also talking about remicade or humira combined with 6mp post surgery. Not too thrilled on the 6mp.

Kind of have this feeling like I want to try the light meds after stricture removal, scared of the biological drugs and 6mp/Mtx. I just have this anxiety over new drugs and high side effect drugs.

Surgery is the first step though, my joints still feel ok off the prednisone luckily but I'm having frequent BM and the bad stricture pain. Where my stricture is located should be 5cm normally, they couldn't get the ped scope through which is 9mm. So I have a pretty bad narrowing of scar tissue happening.

Hope everyone is well.
01-05-2017, 08:51 PM   #10
ronroush7
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I wish you the best with your surgery.

01-06-2017, 09:08 AM   #11
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I have just had MRI and CTE where they found a stricture on my terminal ileum. I can relate to the pain of a bowel movement, sometimes it gets blocked and the pain is horrendous, eventually I throw up. I have no active inflammation so this is an old scar. I've had this problem for ten years and over that time it's improved to being dormant now, so dormant they can't really diagnose for sure because there is no active inflammation. My advice to you is work on your diet, I think diet put me into remission and I can live with the stricture if I'm careful of what causes problems. Maybe yours is too bad and you will need surgery but even then I would work on diet as a way of going forward. I saw a nutritionist and she put me on a gluten and diary free diet. Over two years it's strengthened my bowel to the point I rarely have any problems and can eat more foods I couldn't before. I am still very healthy in what I eat, I don't eat processed foods and I would avoid high fibre foods so you stool isn't too bulky as this will cause pain. I worked out what flared me up pretty quickly, fat, insoluble fibre, alcohol was a huge trigger so I pretty much don't drink and only get problems when I do. Other weird things like soy sauce, chilli, acidy things, dark chocolate, nuts. Probably best to avoid gas producing things.

I am also on Humira for my AS (ankylosing spondylitis) but I started to get the problems when I first started this so it didn't stop my symptoms, diet did.

Good luck, I know what that pain is like.
02-09-2017, 06:54 PM   #12
jcashen87
 
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So I have my surgery in a few days and I just talked to my surgeon for the first time since october. Our initial visit he noted inflammation/distention at the bottom of the ascending colon. Said he would remove the strictured area in the transverse and attach the middle of the transverse back to my descending colon. Now he is saying he is going to look at the bottom of my ascending colon and make a decision.He may have to cut out 2/3rds of my colon.

Anyone have this type of surgery? Anybody live with just their descending colon? I am a 29 year old male. Only finally diagnosed in August 2016. I feel like this is a big shock compared to what i ws planning for. Surgeon basically saying he has to decide while he is in there to remove most of my large bowel.

I guess the good part of it would be that all diseased areas would be gone. I feel like I wouldn't have much of my colon left though, if disease came back and further surgery was necessary i feel like i'd have a colostomy bag sooner.
02-09-2017, 06:55 PM   #13
jcashen87
 
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To clarify, IF he noted too much narrowing and scarred area at the bottom of ascending colon he would basically just attach my small bowel to my descending colon. Thats why it would be just maybe 1/3rd maybe a little more left of my colon. All the rest from the ascending to the end of the transverse at my major stricture would be cut out.
02-09-2017, 07:05 PM   #14
ronroush7
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My best to you.

02-16-2017, 10:57 AM   #15
jcashen87
 
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My surgery went well. I had to get 2 units of blood in the OR because I was anemic coming in. I didn't lose much blood at all during surgery. They took about 40% of my colon and attached the small bowel to the descending colon. The incisions hurt but they did it laparoscopically with a little bit bigger incision at the belly button.
Just ate cream of wheat and pudding the morning after. I hope to be home by Saturday morning. Anyone going through the same thing or prepping for surgery it wasn't bad. Hoping for a good recovery now.
02-16-2017, 11:05 AM   #16
ronroush7
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I hope the same for you.

02-28-2017, 11:10 AM   #17
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I'm due to have surgery to remove my stricture in just under 2 weeks. It's at the anastomosis join from my right hemi-collectomy in 2008.

I'm due to have open as my previous surgery was open and quite frankly I'm terrified about going under again as I still remember all the pain and problems from last time. (Although that was a very different / serious situation and I was a good 20 pounds lighter)
Hopefully things have moved on in 9 years and this time won't be so awful but I'm not getting my hopes up. I'm just hoping for a simple recovery with little complications.

I take aza and humira but have stopped humira at present due to the surgery. I don't feel comfortable taking both of these considering the side effects but hope it can keep the disease in remission, I don't want any more hospital visits for a long, long time after this.

Currently I feel okish most days but have chosen surgery after a very traumatic balloon dilation experience and being told the opening is no more than a pin prick. My diet is very limited and I just want the freedom to eat out occasionally without setting off a blockage. I am also worried that eventually the stricture will close up completely and emergency surgery will be necessary rather than choosing when and how to go through such a procedure.
02-28-2017, 11:16 AM   #18
jcashen87
 
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I feel your pain. Even though this was my first surgery they did most of it laparoscopic with a 2.5-3" incision from my navel upward. That cut hurt the most other than the 3 other.very small cuts. Now 2 weeks later though I feel great. One of my 3 structures my surgeon said he couldn't fit the tip of his pen through it. So I feel your pain there. I kept eating whatever and just suffered everyday in pain until surgery. I ended up very anemic leading up to it too.

It's really a tough disease. I've never been on maintenance meds other than Lialda and prednisone. I'm on nothing now until I heal fully. They want to put me on aza and humira as well ironically. They offered Humira or remicade. I chose humira as Infusion center is harder for now than getting my shots at home. I hope this surgery works for you. I know it will bring you relief in the short term. Hopefully remission is possible for us all very soon.

Also I can tell you if you feel better coming into this surgery and it's planned not emergency I would bet good money it will be a lot better than your previous experiences. I felt better just doing colonoscopies the second times and on, and felt better than I had for surgery and it was all much easier than getting hospitalized very sick and going through things for Crohns.
02-28-2017, 11:22 AM   #19
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Also an interesting thing my surgeon told me in my follow up a week after. They anastomosis in my case and I would think most now. They put the two pieces side by side instead of end to end, then they have a stapler that stapled together and has a knife that goes in and makes the new hole in both sides for matter to pass through. This way they get a bigger opening where scar tissue will come due to surgery.

If I could ask you Your_Torpedo did the Aza and Humira do anything for you? What side effects have you experienced? Or are you worried about the lymphoma etc? Thanks
02-28-2017, 12:03 PM   #20
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Well I've been on Aza for full 9 years but have been frankly terrible at remembering to take it as I've felt quite well and honestly until the past two / three years have refused to accept the seriousness of this disease.

That all changed when I started flaring very badly every single month, around Jan 2014, but again due to not wanting to accept it could be the crohns I blamed it on everything from period pain, changing contraceptive treatment, food poisoning and eventually lactose intolerance. Then I had a flare so bad that I couldn't keep water down so I ended up in A&E and a 5 day stay in hospital over my birthday. That's when I they told me it was my crohns, and it was bad, and my ignoring it had created a lot of scar tissue and inflamation and thus the stricture. I was given a Gastro team at my local hospital (prior to this I had no Gastro team for 6 years as my work took me all over the country and I never even bothered registering with a new gp - as I said huge denial I was even sick.) They tried to fix my symptoms with low residue diet and starting me on humira.

I can't be sure if I have had any significant side effects while on Humira but just knowing about the increased risks that come from taking it with the aza is enough for me to want to get off it. I did find that before taking Humira and while on low residue my symptoms were much less and I felt back to normal, since being on humira I have had huge distension in my stomach, I look 3-6 months pregnant most days and a gurgling sound constantly that sounds like drains. Very embarrassing in my quiet office. It supposedly did the trick though and March '16 I had no active disease, but of course tackling the inflammation wasn't enough to ease the stricture symptoms so they attempted a balloon dilation. I say attempted here because even though I asked for the procedure under general after a previous very uncomfortable colonoscopy somehow I ended up with just sedation - I was not sedate. I was in total and utter agony. He took forever to find the stricture and then after screaming, crying and yelling for him to stop he managed to dilate 12mm. I was hysterical for a good hour afterwards, could not stop crying. I consider my pain threshold with this disease to be relatively high but that was like nothing on this earth. I was later offered another dilation with the general as originally promised but declined as I genuinely don't trust whatever dr does the procedure not to push the dilation past it's limits and I couldn't afford a tear and emergency surgery. So I decided on the removal, but on a day and time that I could choose so that I could save enough money to cover the 2 months or so I expect to be out of work. I still need to pay rent and my work is mostly freelance so no sick pay.

That leads me to now, scared to go in for another operation but sick of living a half life. I have it better than a lot of people suffering with this disease, I manage to hold down my job and attend work most days. I even go to the gym 2 times a week. However I can't ignore the fact that I can only eat around 5 specific meals now, and anytime I eat out I am ill for the next few days. Alcohol has been completely a no go for the past 7 months, and to date my flares have ruined 3 separate holidays. (Food / activities).

I tried fodmap all last summer and was generally miserable. I found lacto free milk gave me some relief but gluten free products generally gave me bad D. At present I mostly eat chicken, white bread, potatoes and pasta. I'm hoping the op will give me my life back but feel it is a lot to put my body through again just to remove some scar tissue.

One thing of note is that although on immuno- suppressants I generally rarely get regular sick - colds / flu and the like. I also don't take a long time to heal if I get cuts etc. This scares me in a way because I feel that perhaps my immune system is extra active and even the meds I am on won't be enough to control it attacking more of my digestive system. I've survived the past two British winters watching my colleagues drop like flies with various bugs and have lived in London commuting on the filthy tube every day without seemingly picking anything up. By rights I should be much more sick than I have been but so far Humira and Aza haven't presented any terrible side effects of that variety. I have noticed my skin is particularly dry though but again I just attributed this to the terrible London water we have here and having sensitive skin anyway (Excema).
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