Crohn's Patient Looking for Answers

[AK2323]

Hey everyone, this is my first post here and I'm hoping that someone who has been in a similar predicament can help me out.

I was diagnosed with Crohn's Disease 10 years ago, when I was 12 years old, and I've had two surgeries (one bowel resection and one surgery to remove adhesions). For the first seven years that I had Crohn's, I only went to the hospital a handful of times and I usually felt better after getting on Prednisone. However, lately I feel like I'm having a flare up, but when my doctor runs tests (CT scan, X-Ray, blood work, etc.), he says that no active Crohn's shows up. I've been in and out of the hospital and looking for answers.

My doctor admitted me to the hospital last week and I was there for several days, but then I was sent home with steroids and antibiotics. I'm still experiencing the same issues (cramping, loose stools, feverish feeling, can't eat) and I feel like there are no answers. I've been looking into other diseases and illnesses to see if what I'm experiencing is no longer just Crohn's related, but I don't know what is going on. It seems my doctor is out of answers as well, which is so frustrating. I've scheduled an appointment with a new GI doc, but it'll be two weeks until I can get in to see him and who knows if he has any more answers than my old doc.

Right now, I'm on Pentasa, Flagyl, Cipro and Prednisone. I tried Remicade in the past, but I developed two pulmonary embolisms that my doctor believes were related to the Remicade. Should I try Humira? I don't know what to do at this point.

If anyone has been through something like this, please let me know. I'll provide more info if necessary. Thanks.

 

[Trysha]

You are having a bad time of it, sorry to hear of your problems.
Have you had a colonoscopy or other tests to see what is happening.
It is good to get another opinion and it is too bad you have to wait for this.
Are there any foods which might be upsetting you?
Recently my new GI prescribed Mucillium and I took it with some trepidation.
I have found it eased some of the cramping pains of my crohn's and it has helped a little with the eating although it is not yet normal.My blood work was mostly normal.
Tomorrow I have an ultrasound and in a few weeks colonoscopy and gastroscopy
scheduled.
Mucillium is soluble fibre and made from psyllium husks.It is a fine powder and very easy to make into a drink.I add some orange juice to help the taste.
Some others on this website have been helped by taking similar products..
Feel better soon
Hugs and best wishes
Trysha

 

[AK2323]

I had a endoscopy and colonoscopy about a year ago, but it didn't show any inflammation. Because of this, my doctor doesn't feel like I need another one. I'm not so sure, since it was a year ago, and this is something I plan on bringing up with my new GI.

I know that my issues aren't food related because I really haven't been able to eat normally for the last week and a half. I've mainly just been drinking Ensure. I tried going on a soft diet (mashed potatoes, pasta, etc.) but I couldn't handle that.

 

[AK2323]

I'm tempted to go back to the hospital, but I feel like they will just send me home. My cramping and diarrhea keep getting worse. I just feel like the doctors must have missed something. I feel hopeless.

 

[tots]

My CD is never seen with a colonoscopy, only a small bowel series. You can still have symptoms and have all your tests look negative. I would be worse at night , the pain would get so bad I would go to the ER. They can't keep ignoring the symptoms.

I sorry you feel so bad


Lauren

 

[blackli]

Lying down with a nice warm heating pad always helps me with cramps. Give it a try and hang in there!

 

[Trysha]

Sitting in the recliner with feet up and surrounded by heat , hot water bottles and heating pad, and soft warm throws, occasionally a tylenol x2 helps as well.
I felt quite ill after the ultrasound, painful with all the probing.
It was also extremely cold -20 and such an icy wind waiting for the bus home.
Hope you will soon feel a bit better
Hugs
Trysha

 

[Trysha]

PS Posts are not rationed around here so post all you want to especially if it helps you

 

[AK2323]

My CD is never seen with a colonoscopy, only a small bowel series. You can still have symptoms and have all your tests look negative. I would be worse at night , the pain would get so bad I would go to the ER. They can't keep ignoring the symptoms.

I sorry you feel so bad


Lauren

Thanks. What did you end up doing to get rid of the pain and issues? At some point, I think I may just need to switch over to Humira and hope that fixes everything.

 

[Trysha]

Had Imuran and had a bad reaction with it, next was Remicade which worked well but started reacting to it.
You may find Humira is the answer for you.
Currently have no treatment but a new GI is working on it.
He has ordered so many more tests and the ultrasound is one .There currently are no answers for me. Just have to get on with things and wait for the scopes to be done.
He feels current problems may be due to diverticular disease.
Who knows?
Just keep going and hope for the best.
Hugs Trysha

 

[AK2323]

Right now, I have Tramadol and Ativan to help me get through the next week until I can see a doctor. I'll definitely try using a heating pad. I'll let you know what the doctor says and if I get any answers!

 

[AK2323]

My doctor took me off of Remicade because I had two pulmonary embolisms (blood clots) and he felt like the medicine may have been why. Has anyone else had that same issue? And would that keep me from trying Humira or are the side effects completely different?

 

[bigtruck]

After 8 years on remicade I had problems with blood clots and swelling of the heart muscle, as a result I can't have humira either as it is a tnf inhibitor.

 

[Nicola38]

I have had CD for 28 years (i am 42 now) and had 5 resections, no meds work for me anyomre so it is always straight to surgery now. My CD flare/inflamtion doesn't show up on anything but the Pillcam now - have you had that? x

 

[AK2323]

Thanks for all of the comments. I was referred to a doctor who only takes on complex Crohn's cases and he has been really helpful. Part of the reason my situation is complex is because I've developed two pulmonary embolisms over the last year, so the doctors are really careful about what medicine I'm on and have to deal with the clotting issue while they treat my Crohn's. There was some concern that the Remicade may have caused my clots, but nothing definitive. Now that I'm seeing this new specialist, I'm doing a bunch of tests this week and then I'll likely be starting Imuran. If that doesn't work, he wants me to take Humira. I'm optimistic that he can get my Crohn's under control and then I should be able to get back to normal.

 

[bigtruck]

Hi ak2323 I also suffered clots thought to be due to remicade and as a result my treatment options are greatly limited.

 

[Clash]

AK2323, so sorry to hear of your struggles. I hope you are able to find a med that can get you back to remission.

I wanted to mention that people with IBD generally have a higher risk of pulmonary embolism(PE) and/or deep vein thrombosis(DVT).

Here is a quote from research with NIH(national institute of health):

CONCLUSION: IBD patients have a threefold increased risk of developing DVT or PE.

Here is a link to the research study:
http://www.ncbi.nlm.nih.gov/m/pubmed/11307809/

There are many more studies like this on PubMed and it is a known risk of IBD. Just wanted you to have the information so you might bring up which possibility of causal factor for the PEs you had to the new GI, med or IBD itself.

Good luck.

 

[LCATC945]

Sitting in the recliner with feet up and surrounded by heat , hot water bottles and heating pad, and soft warm throws, occasionally a tylenol x2 helps as well.

I felt quite ill after the ultrasound, painful with all the probing.

It was also extremely cold -20 and such an icy wind waiting for the bus home.

Hope you will soon feel a bit better

Hugs

Trysha

Cold weather is the worst especially in a flare. When I get cold my abs contract trying to retain heat which bothers my stomach because of the added pressure. Also something some people find weird but I really don't care because it works is sleeping at night in the nude...yeahyeahyeah give me a second to explain. The elastic in the waistband of my pajamas. Even just a loose pair just from sitting applying the pressure on my stomach to just stay on makes the pain worse for me. Idk it's just me. What I've also been doing is laying in bed on my side with my legs drawn up into a partial fetal position with my electric blanket on. Also I feel as though laying on my side helps with the weight of the blankets not falling directly on my stomach but instead is on my hip. I am also on pain killers though from when I was in the hospital...my first time for being hospitalized for crohn's. I've been to the hospital a total of 3 times for crohn's issues. One was from before I was diagnosed and they told me it was hemoroids and sent me home. The second was they didn't tell me what it was but tried to treat my symptoms instead of my disease. And then this last time I actually got admitted.

 

[LCATC945]

Had Imuran and had a bad reaction with it, next was Remicade which worked well but started reacting to it.

You may find Humira is the answer for you.

Currently have no treatment but a new GI is working on it.

He has ordered so many more tests and the ultrasound is one .There currently are no answers for me. Just have to get on with things and wait for the scopes to be done.

He feels current problems may be due to diverticular disease.

Who knows?

Just keep going and hope for the best.

Hugs Trysha

I had an issue with the imuran too. I was put on it because I reflared when the doc started to ween me of prednisone from my flare last spring. I was on imuran for 3-4 weeks and was improving. Slowly. But then in the middle of the night I got hot with nausea. Vomiting. And pain. A lot worse than I had been in weeks. I thought it was something I are so I waited it out a day. The day after I was worse and the pain was so bad I was in tears. I had my gf drive me to the er and the imuran tanked my white bloodcell count to a dangerous level. They basically admitted me on that fact alone. The pain meds helped though. They first gave me something with an F that works faster than morphine but wears off quicker. And then they switched me to morphine. Then later added norco. Then when they started weening me off of morphine (which they did middle of the night. Without informing me first. When no one could be reached so I had to suffer all night) they switched the norco to Percocet. Then they upped the Percocet and extended the morphine time. Then I got off the morphine completely. The stupid medical resident on my release tried to pull one over on me and give me a lower dose norco when I had the Percocet scheduled while in the hospital not as needed. But I got that corrected. They just warned me of addiction. Still only got 30 which I can't stretch too much to ween off. I try and try but I haven't been able to start new treatment to fix it. My gi reluctantly gave me another 30 and I see him again on Tuesday for my colonoscopy...I'll prob have to ask for another prescription which he won't be too happy about but if I'm not having new treatment started then how am I supposed to deal with the pain? Oh by the way he wants to start me on humira. Any tips for that?