I was diagnosed in 2002 with Crohns. Never had any surgeries just lots of meds. I had 4 attacks in 2 weeks in Jan and had a hysterectomy where they found several intestinal adhesions. They cut them off my abdominal wall and I felt great for 3 weeks. Since last Monday I started the attacks, worse than ever. I can't keep any solids down, possibly a cup of crackers with lots of water daily is all I have ate since then, it's been 9 days. I have been keeping a low grade fever. Had a small bowel series Thursday and found out I have a stricture at the diseased terminal ileum. The cecum is adhesioned and coned. Dr has me on Pentasa, prednisone, bentyl, Prilosec. Can't take entorcort, it makes me swell. I feel absolutely terrible and my dr office isn't taking this too seriously. He finally is trying to get me on Humira once he seen I had a stricture. Mine is scar tissue though so I don't understand how it's going to help. I don't think I can go too many more days feeling like this. I've lost 40 lbs in 2 months. Now today my lower back is hurting and very hot. Can anyone give me advice that has been here at this point? What do I need to be prepared for (hospitalization, surgery)? I've never been this sick for so many days straight and my Dr hasn't consulted with me about my stricture yet. I don't want to go to the ER till I know for sure they can do anything for this.
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nogutsnoglory
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I'm so sorry to hear that you are suffering and not getting the attention you deserve.
You are right that if your stricture is mainly scar tissue, Humira won't help in that area. If it's inflammation and scar than Humira can help potentially. I think you should seek another GI opinion and possibly consult with a surgeon to determine the best course for you. You certainly can't afford to feel this way and keep losing weight. Surgery may be necessary to remove the stricture and restore you to normal functioning.
You are right that if your stricture is mainly scar tissue, Humira won't help in that area. If it's inflammation and scar than Humira can help potentially. I think you should seek another GI opinion and possibly consult with a surgeon to determine the best course for you. You certainly can't afford to feel this way and keep losing weight. Surgery may be necessary to remove the stricture and restore you to normal functioning.
SarahBear
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Welcome to the forum!
Do you mind if I ask where you're located in West Virginia?
As NGNG said, if your stricture is being caused by scar tissue, medications won't help. You'll need surgery, so personally I'd try to prepare for that. I wouldn't hesitate to go to the ER in your situation, especially since you feel that your doctor isn't helping. Have you been able to eat / drink anything to stay nourished? Are you experiencing any bleeding?
Do you mind if I ask where you're located in West Virginia?
As NGNG said, if your stricture is being caused by scar tissue, medications won't help. You'll need surgery, so personally I'd try to prepare for that. I wouldn't hesitate to go to the ER in your situation, especially since you feel that your doctor isn't helping. Have you been able to eat / drink anything to stay nourished? Are you experiencing any bleeding?
I'm in Princeton.
I'm trying my best to eat at least yogurt but normally I'll vomit any meat or real food up when I try. I have ate some oatmeal today and it stayed down but it was excruitiating to digest.
I do have blood in stool and urine but no bladder infection detected. I wonder if the heat in my back is my kidneys or where I can't digest what I have ate through my stricture backing up.
I'm trying my best to eat at least yogurt but normally I'll vomit any meat or real food up when I try. I have ate some oatmeal today and it stayed down but it was excruitiating to digest.
I do have blood in stool and urine but no bladder infection detected. I wonder if the heat in my back is my kidneys or where I can't digest what I have ate through my stricture backing up.
SarahBear
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Yup, I'd go to the ER at this point. I'd be concerned about a fistula if you're having blood in your urine with no other obvious cause. At the least, the ER can give you fluids and try to keep you nourished. They may hospitalize you, as well.
What is your doctor's plan at this point? If you don't go to the ER, what happens?
What is your doctor's plan at this point? If you don't go to the ER, what happens?
nogutsnoglory
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I agree with Sarah if you can't stomach anything you really shouldn't wait. I know the ER is no fun but neither is suffering and you don't want to let things get out of hand.
What causes a fistula? and located where?
To be honest I doubt my actual Dr realizes what's going on. He stopped seeing his patient and only has PA's that see you. It's terrible because they have no clue. I've had to call several things to her attention.
Most of the time the ER has no clue of how to deal with a Crohn's flare, but being this is my first stricture and it's already documented they might actually treat it. I'm a little stubborn, I feel like I need to wait till I can no longer bear it to go to the ER but I'm missing work and I'm miserable living everyday just waiting for something to happen that someone will actually take seriously about how much i hurt.
To be honest I doubt my actual Dr realizes what's going on. He stopped seeing his patient and only has PA's that see you. It's terrible because they have no clue. I've had to call several things to her attention.
Most of the time the ER has no clue of how to deal with a Crohn's flare, but being this is my first stricture and it's already documented they might actually treat it. I'm a little stubborn, I feel like I need to wait till I can no longer bear it to go to the ER but I'm missing work and I'm miserable living everyday just waiting for something to happen that someone will actually take seriously about how much i hurt.
SarahBear
Moderator
Inflammation would cause a fistula. They can link the intestines and bladder, and would cause blood in your urine (possibly feces and gas as well).
The longer you wait, the more time you're giving your body to get worse. Even if all they do is give you IV fluids and pain medication, you're going to be in better shape than sitting at home miserable.
The longer you wait, the more time you're giving your body to get worse. Even if all they do is give you IV fluids and pain medication, you're going to be in better shape than sitting at home miserable.
Just wanted to give an update. I ended up in the ER yesterday morning and received 2 bags of iv and pain meds. No blockage on the X-ray so I went home several hours later. I had my endo this morn and finally seen my Dr. He reviewed everything and talked with me and immediately said he wants me to start Remicade transfusions and see a surgeon to remove the stricture after we give the meds a try. Thank goodness I finally seen him and not the PA. They found some infection in my stomach and biopsies that so I will be awaiting those results. So anyone have experience in Remicade? Any pain or things to expect with this? I have now been put on a 2 month leave from work in hopes to get this straightened out.
nogutsnoglory
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Glad you were seen and are starting Remicade. Remicade won't cause pain but should help relieve it in due time. There are many side effects that can occur from the drug but when you say pain I think you mean worsening crohn's.
SarahBear
Moderator
We have a Remicade section in our Treatment forum. You can find it here. You can read about others' experiences, and please feel free to post your questions and concerns regarding Remicade there as well.
I wouldn't worry. While there are many potential side effects as NGNG mentioned, this is true of any medication… and especially of Crohn's itself. Untreated Crohn's is definitely more dangerous and painful than treatment for it.
:hug: I hope everything goes well. Please keep us updated!
I wouldn't worry. While there are many potential side effects as NGNG mentioned, this is true of any medication… and especially of Crohn's itself. Untreated Crohn's is definitely more dangerous and painful than treatment for it.
:hug: I hope everything goes well. Please keep us updated!
