Please help...are symptoms stricture or inflamation?? Doctor put surgery on the tabl

[seligsoj]

Can anyone help me with this? How can you determination whether your symptoms are related to a stricture or an inflamation?

I am 33 and have had Crohn's ileitis since I was 14 and have had flare ups here and there but have been on remission on asacol for many years. The first flare I had when I was 14 was effectively treated with prednisone. The last time I had a flare-up was five years ago which was effectively treated with Entecourt. A colonoscopy and small bowel follow through were done...... the small bowel through was normal but the colonoscopy showed a significant stricture in my rectum/IC valve. My bloodwork has always shown signs of inflamation/anemia, even during times that I've felt well.

Fast forward to the present......I gave birth to a son four months ago, had an easy pregnancy, and have been trying to eat extra healthy to lose the baby weight.......all the fiber I was eating did a number on my stomach and I started to have what I believed was a flare....some diarrea, acid indigestion and intense abdominal discomfort upon eating dairy, vegetables, fruits and items with rough edges (i.e. nuts, granola). My doctor prescribed entocourt once again.......however this time is hasn't worked! My stomach has continued to bother me, particularly when I eat trigger foods. I have reduced my diet to a low residue/low fiber diet and I no longer have diarrea or bad cramping but still have significant acid indigestion and have only about 10 foods that I am eating. If I try to eat any trigger foods, the horrific cramping comes back.

My doctor did bloodwork and for once my bloodwork was totally normal.....my doctor was very surprised and attributed it to the pregnancy....saying that sometimes that happens with pregnancy. He also said that this is why the entocourt probably hasn't worked. He's saying that I probably don't have inflamation but its the stricture that is causing the intense cramping/abdominal distress and the only way to fix this is through a resection of the diseased area. He's having me do an MRI just to make sure he hasn't somehow missed the inflamation and to find out more about the stricture. I'm terrified.....surgery???? after so many years of feeling well?

Does this make any sense? What are my options?

 

[Jennifer]

Get the MRI done and go from there. You need to know what's actually going on in there first before they do anything. Surgery with IBD will always be a possibility no matter how long you've been in remission and no matter how many surgeries have been done already. Many of us have had a resection on here including myself but a resection is not the end of the world and can definitely improve your quality of life tenfold.

Strictures in the colon can be very dangerous meaning that if its in the colon, then there's a higher likelihood of developing cancer there than if it were a regular stricture in the small bowel. http://www.medicinenet.com/inflammatory_bowel_disease_intestinal_problems/page4.htm

I wish you the best of luck and keep us posted on the MRI results. If you do have surgery, you're going to be ok. Welcome to the forum!

 

[braveheart]

Hi Seligsoj,

I think we are almost in the same boat.
I’ve had Crohn for 20 years and I’ve been successfully dealing with it since I’ve started immunosuppressants (6mp).

Before starting this treatment I had a surgery in 1994, which gave me a great relief. I thought I was cured and I stopped taking meds (big mistake). Unfortunately two years later I started with symptoms again. My doctor at these times offered me another surgery, but I didn’t want to do that again, since I had terrible times recovering from my first surgery  I looked for another doctor who introduced me to immunosuppressants. After more than ten years using 6mp I’ve started to have problems. I’ve added a diet (SCD), then, then Questran Light, and then antibiotics (flagyl, cypro). All of them helped at first but then with the time the problems came back.
My blood test is ok (C - reactive protein). I do not really feel pain, just a kind of constipation after eating; I can feel the food passing through my guts. And I go to the toilet from 3 to 6 times a day.
My doctor believes my main problem is strictures that are not going to go away with meds, but he is not sure. He is not sure if going for a surgery or Remicade or both. I’ve done a CT scan that I will show to him on Monday.
My guess is the problem is 80% scars of old inflammation that require surgery and 20% of inflammation, because I can feel some of the extra-intestinal effects such as joint pain from time to time. Do you also feel joint pain or any other symptom?
I am sorry for my terrible English; I hope you find proper answers for your questions.

Regards

 

[seligsoj]

Thanks Bravehart,
I appreciate you sharing your story with me. Please let me know what your CT scan showed, and what your doctor decided to do. I have my MRI scheduled for a week and a half from now.

Julie

 

[maxibear]

i am new to all this, just wishing you good health

 

[braveheart]

I just came back from seeing the medical doctors at the hospital.
CTScan shows many stenosis and an evidence of a very low inflammatory activity. It is almost the same results I’ve got last year from a doppler ecography. They said that C - reactive protein is almost normal too (0.4 mg/L).

My doc believes the best way to go is scheduling a surgery. Another doctor there suggested trying some prednisone first even I am on Entocort now, prednisone is more powerful. The problem about trying prednisone is, it is not good to mix prednisone and surgeries.

If you ask me I believe I am stable, the problem is I am stable in an uncomfortable state of health. I think what my doc suggests makes some sense. I will visit a surgeon on Dec-30th to see what he thinks about this case. I wish I could do something different from a surgery. I had terrible times in my surgery in 1994.

You talked about acidity, have you tried Omeprazole?
http://en.wikipedia.org/wiki/Omeprazole I think you do not need prescription to buy it in the US. For acid stools I have something called Questran Light.
Julie let me know the results of your RMI.

 

[seligsoj]

Thanks for your response braveheart. It is good to hear from someone who is in a similar predicament to myself.
I did purchase some omeprazole (prilosec here in the states)....I haven't taken it yet, but I think I will start tonight, after hearing of your success with it. My doctor also discussed prednisone as a possible option since I didn't responde to the Entecort, and he did say that pred is more powerful. ....Prednisone worked well for me when I was first diagnosed when I was 14. But I guess we will have to see what the MRI says. Please let me know what your surgeon says....it sounds like your surgery was awful in 94' but I bet they have refined the procedures since then and it may be much more tolerable.....although I am dreading the thought of having to do surgery myself, so I totally hear where you are coming from

 

[oldcrohn]

Hi Maxibear, I see that you had a strictureplasty recently. I just found out I have a stricture in my terminal ilium and dr. says i need surgery. I haven't seen a surgeon yet but have been doing research on internet. Do they have to cut you open to do a strictureplasty? How long was the recovery? Where did you have it done? Can they do a strictureplasty when stricture is fibrotic or hard? I know you may not know answer to all these but would appreciate any help you can give me. Why was it an emergency? Did you get an obstruction? Can you tell me your story and how it happened? Thanks so much. Joann

 

[maxibear]

hi joanne

Hi Maxibear, I see that you had a strictureplasty recently. I just found out I have a stricture in my terminal ilium and dr. says i need surgery. I haven't seen a surgeon yet but have been doing research on internet. Do they have to cut you open to do a strictureplasty? How long was the recovery? Where did you have it done? Can they do a strictureplasty when stricture is fibrotic or hard? I know you may not know answer to all these but would appreciate any help you can give me. Why was it an emergency? Did you get an obstruction? Can you tell me your story and how it happened? Thanks so much. Joann

here is my story, i had my surgury done at north shore univ in manhasset by dimitri theodoropolis, a very skilled colo rectal surgeon who just happened to be on the night i was taken to the er. my symptoms were just extreme bloating and constipation. i did not feel right, but had no idea i had crohns. they did a lapro but converted to open because i had alot of creeping fat and a perferation. the fat caused the narrowing, so they told me they had to do the surgury imediatly or else. it was a five hour procedure. the recovery in the hospitol was ok. was on morphine which was not bad. i only had pain for a few days, but was out of it. was in north shore for a week. the hard part was cominig home, very weak for about 2 months, then after a ct small bowell enterogropyh, terminal illeitis was confirmed. i feel ok now, but had a few partial blockages since. they went away, by lots of fluid intake. i should be on 6 mp or humira, but im nervous about side effects, so im rolling the dice with pentassa and cipro, which probobly is doing very little. the funny thing about my crohns is how it presents itself. no pain, no d, no vomiting, just constipation, /the constipation is the bowell narrowing, so thats my deal. will need to go on stronger meds or face another operation. i hope you feel ok. north shore is a great place and my surgeon is a lovely women, very good/ i would reccomend her. if you need her number, pm me. hope this helps

 

[oldcrohn]

Hi Maxi, thanks so much for telling me your story. What a way to be told you have Crohns huh? Wow, I had a big lump in my throat while reading it. Crohns and I go way, way back to over 23 years but this is the first talk of stricture. I've almost always had my flare ups in the Terminal Ileum. I go to see a Stony Brook surgeon on Tuesday and then will decide from there about second opinions. Thanks so much for offering your surgeon's number and I might take you up on it. My gastro said that this will not be taken care of by meds because there really isn't much active disease in the area, only fibrous tissue.

 

[tummygirl]

Hi - I also have a stricture in the IC area. My Doctor is thinking mine is probably 80% scar tissue (which only surgery can fix) and only 20% inflammation (which medication can fix).

He said this was based on what they see statistically in Crohns, since I first started showing symptoms in 1990 and now it's 20 years later... I think it's a graph or something that shows the typical progression of the disease.

I am also not eating any fibre. It's the 'cellulose' in the food that doesn't get broken down, is still in large pieces and actually physically gets stuck in the strictured areas because they are too narrow. The foods that are bothering you sound very similar to the food that bother me.

Good luck figuring out what your next step is!

(For me, I've gone to weekly humira, monitoring whether I'm still having obstructive-symptoms, and then we're going to do an Indium Scan to check for inflammation in 6 months.

If I'm still having symptoms, but I show no inflammation (because the Humira should control that and the scan will confirm if that is true) then that means my symptoms are from scar tissue, and not inflammation.)

 

[maxibear]

funny thing, after my surgury, was eating lots of fiber before i spoke to my gastro and had second blockage due to all the fiber. my mistake. now i drink lots of ensure, eat broiled chicken, corn flakes, low residue diet and besides fatigue, i feel ok, but i know the scarring will be a future problem according to my research, but i dont look far ahead. im alive, im running 4 miles a day, playing my guitar and awaiting my psa score for possible prostate cancer. i hope its not, but if it is, they take it out and life goes on

 

[oldcrohn]

We are a mess aren't we. I was just watching 'the Amazing Race' and thinking that people older than me can run this race and I'm exhausted just watching it on TV I am better with the eating than I was before too. Going to see surgeon on Tues so I'll keep y'all up to date on what she says. Thanks for all your help