On Tuesday I gave myself my first unsupervised home injection. The previous two sets were done at the doctor's office with no problems. This afternoon I noticed a rash at the injection site. It is not very big and does not hurt but I am still concerned. My doctor was not in and the partner who was is one I do not care for. He advised, through the nurse, that I "keep an eye on it and call back if there is any change". Anyone have an injection site reaction before. Is it normal or what?  Please excuse fat white belly, it has been a bad couple of years:(

I was recently diagnosed with IBS. I have terrible stomach pain and constipation.
Does anyone have natural remedies for constipation? and instant relief from constipation?
(I have already tried prunes, prune juice, and drink at LEAST 8 glases of water.) I'm at a loss of what to do since I am new. It's getting to the point where it's bringing me down emotionally. I feel like I have tried everything and re-vamped my vegan diet pretty well, and nothin has changed. It's been a week and i've only went to the bathroom once.

Some of you may recall a few of my past entries where I stated my doubts about my GI specialist and just how committed he was to me as a patient. Well, the story gets better (or much, much worse depending on how you look at it).

Approx. 2-3 weeks ago I made a visit to my primary doctor to discuss some anxiety issues. We also ended up talking about my crohns for a little while as well. He told me that although the GI I had been seeing is undoubtably the smartest and best in the area that perhaps we just weren't "connecting" and that he would refer me to another guy who is in the same GI office and that I should see him asap (a week or 2 tops). I was pretty excited about that.

Well, I called the office and explained to the receptionist that my primary suggested I switch dr's and her immediate response was "WHY? Actually...nevermind. Doesn't matter". Then after several minutes of going through her computer she told me that it would be a long time before I could see this new doctor. Here is our following conversation that still makes my head spin:

Receptionist: Well, it's gonna be a long time before you can see him. Probably about 2 months or more.
Me: Oh, well Dr (primary who is closely affiliated with the office) thought it would be pretty detrimental for me to be seen in a week or 2.
R: (yelling) WELL ERIN! Thats just NOT going to happen now, is it?
M: .....uh....
R: What EXACTLY is your emergency anyways?
M: Well I have crohns and I'm having a few issues at the moment that need to be checked on.
R: I'll write him a note and he can decide for himself if you're worth overbooking for. Goodbye.

Seriously. I have exaggerated no part of that conversation. I was fuming. Then 2 days later (and one visit to the ER later...) I get a call from this same receptionist. She tells me that I can see this new doctor on August 20th and that if that's "not good enough for me" then I can go into Boston (to a disgusting welfare hospital). I told her that if the wait was that long then I would gladly just see my original GI specialist who I was switching from. Here is where she yells at me again.

Receptionist: BUT YOU SAID YOU DON'T WANT TO SEE HIM ANYMORE! HEH! (that kind of sarcastic and snarky little laugh at the end)
Me: NO! My primary dr SUGGESTED I see someone else! And you know what? I'm done with this. Just forget the appointment. I'll figure something else out because obviously your office isn't willing to help me at all.

At that point she changes her tone and insists on making me the appointment anyway but instead of writing it down I hung up on her. Luckily I was able to find another specialist a few towns over who take my insurance and were happy to get me an appointment in 2 weeks, which as we all know is pretty fast if you're a new patient.

i am still really angry about how I was treated though. They behaved as if I looked them up in the phonebook out of nowhere and then demanded a CT scan, blood tests, colonoscopy, and barium enema the very next day. They definitely did not treat me like the existing patient that I was. Or even a patient at all. That woman acted like I was shit on the entire practices shoes and I'm PISSED. I do plan on writing a letter of complaint about her but I'm not sure who to write it to. But it proves that my doubts were right. My doctor sucked and wasn't interested in helping me at all. I'm glad I got my proof.

Anyone else had a similar experience?

Hi all. I hope everyone is happy and healthy. :)

I have a question that some of you may be able to help me out with. I've recently discovered that people who are on both Remicade and Azathioprine may be at risk of developing certain types of lymphoma. No one, including my doctor, had told me about this. I knew about the risk of diabetes when on Remicade, but not lymphoma. It's quite frightening. Have any of you heard about this connection?

I've been wanting to get off of all meds for some time now, and I feel that this is the push that I need. So, my next question is, have any of you tapered off of Remicade and/or Azathioprine? If so, how did you go about doing this? Is it in fact a weaning off, or a cold-turkey type of deal? I'll be consulting with my doctor first, of course. So far, I've had a good experience with both drugs for the entire four years I've been on them, but...I can't see myself being on such serious meds for the rest of my life. I'm going to be controlling my Crohn's with diet and alternative healing. I've tried the Specific Carbohydrate Diet and the Life Without Bread diet and have had good results with both.

As always, any help is greatly appreciated!


-Marisa

Okay. So. Entocort has been like a miracle drug for my stomach. However, it is giving me sleep issues. I couldn't take Rinocort (same drug) for the sleep and heart palpitations. Just sleep problems I can deal with, I think (also because it's worth it for the rest of me to feel so good!). But I was wondering if anýone else here has had similar issues with it and found a solution. Usually I take Benadryl when I can't sleep, but I can't do that for three months (and at 18 pills a day now, really don't want to add more.). Suggestions?

(Sorry if the post is blocky... Posting from my phone while in bed unable to sleep)

Hello
My name is Kelly. I was just diagnosed with Irritable Bowel Syndrome. From what little I know about it, I know it's different from IBD. I'm just hoping I still belong here. My doctor just prescribed me Bentyl. Just wondering if anyone has had any experience with this medication. Or any advice on living with IBS??

 Hi all,

Has anyone tried the South Beach diet for help in managing Crohn's?

I just finished the first two weeks of the diet, and am curious is I am having a common reaction, or if there is more to expect.

Since South Beach is similar to Cacye diet, which some swear by, I figured it couldn't hurt ... much. I have a more uncommon problem of inflammation at the top of my GI tract, in my tummy, which leads to bile problems. As such, I have trouble with roughage more than most, but I also crave meat at times and have no trouble with it, since all the bile goes to town on dense proteins.

I had hoped the heavy protein-veggie mix for the first phase would be ideal for me. And it was, for about six days or so. My GI tract seemed to tolerate all that fiber nicely and I didn't need to run to the bathroom as much. Then, I started being actually regular, all within a week.

It was too good to last. About a week in, I started with rectal bleeding from what I presume is an internal hemorroid. It became a regular problem for the following week, while I continued to follow the diet.

But on day 14, I gave in and had some simple sugars, which I tend to process best. That and Canasa suppositories stemmed the flow and the problem now seems to be on the wane. But I can still feel some pain, even while my body is suddenly craving more veggies.

Has this happened to any one else? Have you been able to follow this diet and actually get good nutrition, without sacrificing for pain or new problems?

Anyone?

It's okay - I'm recovering more from the general road trip exhaustion than from my flare-up!

I had my doctor's appointment this morning, and the nurse practitioner I saw prescribed Entocort.  As soon as he touched my abdomen to check the transverse colon, I had to tell him to stop - he looked at me and basically said "I can tell you're not usually a complainer, so there's a lot going on there.  Have some drugs."

BUT I survived a road trip while on my first flare ever.  Without extra drugs.  I feel like that was very important for me, to realize that I can still do things (especially when the convention center has lots of smoothie places and TWO breakfast places with good cheese omelettes!)

And I want to thank this community.  There were times when I wanted to cancel and say that I couldn't go.  But then I remembered a post on here (I wish we had tags so I could find it) from someone who went on a canoeing trip despite having one of those ulcers that went all the way to the outside.  That couldn't get wet.  And wrapped themselves in saran wrap.

I figured that if someone could get through that, I could get through a week on the road.  And I did.

So... thanks, guys.

Hi, I was diagnosed with Crohn's about 8 months ago and am mostly under control with medications. My mom was talking to a woman with Crohn's who absolutley believes that Crohn's can be controlled by diet and that she has been in remission for years by following "The Fat Resistance Diet." I told my mom I would look into it but I have heard from so many other people that diet plays little to no role in Crohn's. I was just wondering what you guys think and if you had heard about the diet. I've read some reviews of the book but they are mostly weight loss related and truthfully after having a Crohn's flair I am looking to gain weight, not lose it.

I've been on 6-MP for about 2 years now, and I've noticed for the past couple months that what started out as some freckles, or very small moles, have grown into larger moles. Have any of you all experienced anything similar? I know there lie some risks for cancer from taking 6-MP, and I was hoping to hear any input your doctors have mentioned about the drug. I'm curious about the risks associated with other drugs similar in nature as well (like Remicade).

The moles don't look abnormal in shape or texture... I'm just worried because they seem to have come up quite quickly. But then again, I worry about every little thing from being on this drug. I just never know what I should bring up with another specialist (possibly a dermatologist), or what is me just simply being a worry-wart. =(

I'm on Asacol, but it's just not doing what's needed anymore. I've got an appt w/my doc tomorrow. I feel like I may be ready to move up to the next level of meds. But what IS the next level of meds? Is there something btwn 5-ASAs and the immunosuppressants?

How did you determine when/if you were ready to go to the next med phase?

It is that time of year again, fundraising for the Crohn's and Colitis Foundation

I know Crohn's can affect all the way up to the mouth, but has anyone experienced throat problems related to Crohn's? My throat feels weird. I don't know how to describe it. KIND OF like feels swollen in 1 spot right at the bottom of my throat/neck. It's not sore though.

So.  I'm going out of town for a week (visiting family and then Origins Gaming Convention).

My bowel has, of course, decided that this is a great time to waffle between letting me know if it's just a bug or if a flare-up is starting.

I called my doctor, am sending in test results, and we're doing that part all by phone so I can still go out of town (trip has been planned for over a year.  It's already payed for.  It's the last time I'm going to see one of my friends before he moves across the country.  So... yeah, not canceling if at all possible!)

I will be staying in houses , so will have access to at least a fridge and a blender (that I'm taking with me) for smoothies.  My question is about snackfoods.  My stomach has basically decided that avocados are about as solid as it will handle right now.  Inevitably, at least one meal a day will be eaten in some type of restaurant (I'm going to fight for diners so I can get eggs, which rarely bother my stomach.)  I will have SlimFast meals-in-a-can with me (as I've heard they taste better than Ensure).

My problem is with when I'm at the convention.  I need to come up with snackfoods that will be both able to survive in my backpack AND not make me want to die.

Any suggestions?

(FYI:  Mild Crohn's Colitis & Acid Reflux.  Oddly, carbs are my nemesis when I'm not feeling well - toast, bread, bagels, etc. all seem to make things worse.  Which is kind of a WTF moment.)

I went to see my doctor today and he mentioned the possibility of switching over to remicade or himura. I know remicade is given via IV at a hospital, it's administered about once a month, and it's super expensive. I know himura is a shot given by yourself, but I'm not sure how often you have to do it or how much it costs. Could someone give me some feedback on these?

Also, I have a colonoscopy soon, and I was given glycolax as the prep. I've never had this or heard of it. Is it new? Has anyone had it before? I was told it was a powder that's mixed with a drink and that it's absolutely tasteless, is that true?

Thank you.

Me again :) Thanks for everyones advice/support on my last post. Much appreciated :)

That said, I have another question.

I am seeing my primary care doctor tomorrow to discuss anxiety and meds that could help me cope with it. It's really gotten to an awful point and a few people I know strongly suggest xanax. (I know it can be addictive).

Does anyone know if xanax/ativan/etc is bad for crohns? Does anyone have any experience? Thanks.

What medications have you been on/are you on for treating your Crohn's? My current GI is basically only giving me 4 choices (Pentasa - I had an allergic reaction, Entocort - didn't help much over time, though that's technically what I'm still on, 6MP - I don't want, Imuran - I'm not sure we can afford that, even with insurance, and I'm afraid of the possibilities of gaps in treatment with insurance changes/gaps in insurance).

I know there are other options because I've read others here talking about the meds they're on. So I'm hoping you'll comment with your med history for Crohn's and let me know specifically if it was a total bomb or killed your kidneys or you grew a tail or something. Or if it was the best thing ever. I'm open to anything. I need to start doing some research on other options (including other GIs).

How about for pain? What have you been given in the past for pain since I was told Tylenol is the only option... and I might as well use tic tacs?

Thanks so much!

(Edit - more of my back story as a response to the first comment)

went to the Royal London Hospital .
Spoke to the nurse that said I have Pelvic Floor Dyssynergia. I have to come back in two months during which I will practice a technique of sitting and using pelvic muscles to poo and using a suppository once a week to help get me regular again.
She said I'd never be a one-a-day pooper but I could get to once a week.
She also said the pacemaker (gastro intestinal pacemaker) is being used as a medical trial basis at the moment but if the quota for an eating disordered/recovered group of people with bowel problems comes up I could be able to have one inserted for medical research which is cool and interesting if it helps!

anyone heard of the dyssynergia or tried bowel retraining has it helped??

www.cnn.com/2009/HEALTH/06/11/teen.self.diagnosis/index.html

Teen diagnoses her own disease in science class

 

( Under the cut, 'cause it's a space hog ... )</div></div></div>

Her doctors, no matter how hard they tried, couldn't figure out the cause of Jessica's abdominal distress.

Then one day in January, Terry, 18, figured it out on her own.

In her Advanced Placement high school science class, she was looking under the microscope at slides of her own intestinal tissue -- slides her pathologist had said were completely normal -- and spotted an area of inflamed tissue called a granuloma, a clear indication that she had Crohn's disease.

"It's weird I had to solve my own medical problem," Terry told CNN affiliate KOMO in Seattle, Washington. "There were just no answers anywhere. ... I was always sick."

Terry, who graduated from Eastside Catholic School in Sammamish, Washington, this month, is now being treated for Crohn's, says her science teacher, MaryMargaret Welch.

"She was pretty excited about finding the granuloma," Welch said. "She said, 'Ms. Welch! Ms. Welch! Come over here. I think I've got something!' "

Welch, who has taught the Biomedical Problems class at Eastside for 17 years, immediately went on the Internet to see whether Terry had indeed spotted a granuloma.

"I said, 'Jeez, it certainly looks like one to me,' " Welch remembered. "I snapped a picture of it on the microscope and e-mailed it to the pathologist. Within 24 hours, he sent back an e-mail saying yes, this is a granuloma." 

Although Terry was relieved to finally get a diagnosis, it was also tough for her to hear that she has such a serious disease.

There are treatments, but there is no cure for Crohn's, a condition in which the digestive tract becomes inflamed. It can lead to ulcers, malnutrition and other health problems.

"As I get older, the disease can get worse," Terry told KOMO.

Crohn's disease is often misdiagnosed or diagnosed very late, says Dr. Corey Siegel, director of the Inflammatory Bowel Disease Center at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire.

"Granulomas are oftentimes very hard to find and not always even present at all," Siegel said. "I commend Jessica for her meticulous work."

Pathologists also sometimes miss important findings for other diseases, says Dr. Mark Graber, chief of the medical service at the Northport VA Medical Center in New York.

"This story carries a valuable lesson about how errors are found. It's very often by 'fresh eyes,' just like in Jessica's case," he said. "Some specialty centers, recognizing the reality of perceptual error and the power of a second independent reading, are now requiring second reviews on certain types of smears and pathology specimens."

Welch credits Terry's "fresh eyes" but also local pathologists who volunteered to train her and her classmates on how to view specimens under the microscope.

"We've been lucky to have that partnership. It allowed Jessica to think of herself as a scientist," she said. "The class empowered Jessica to think of herself as being a partner in her own health care."

As for Terry's future, she'll start nursing school in the fall. She's written a book for children about Crohn's disease, which she hopes to have published. In the meantime, she's grateful for her science class and for the pathologist for giving her her slides.

"This has been the highlight of my high school career, for sure," Terry told the Sammamish Reporter newspaper. "It's been amazing." </div>

I've been wondering lately if my biggest health "quirk" is related to my IBD. If it matters, I was diagnosed with UC last July, and my GI goes back and forth between saying it's UC and saying it's Crohn's. I'm 21 and I never drink.
Anyway, I throw up a lot. As in more than anyone I've ever met (who isn't bulimic). When I was 11, I started throwing up every day, and it was eventually diagnosed as a really severe post-nasal drip from allergies. I've been on tons of allergy medications ever since then, and when I miss a day or two, I start throwing up again. Antibiotics that are even remotely strong leave me vomiting for hours. I've puked while getting blood drawn. If I get hungry and don't immediately eat, chances are high that I will throw up. Bad smells, not enough sleep, crying- pretty much everything makes me hurl.
What has really been making me consider that the IBD might be related, though, is that when I get abdominal pain/have sudden urgency, it is often accompanied by the same rush of saliva in my mouth that I get just before I throw up. Has anyone else had this experience? I have a hard time knowing what symptoms are linked and which aren't (plus I'm honestly so used to it that I haven't thought much about it), so I've never brought this up to my GI.