<p>kinyxx, I would hope that nobody would think that diet would have any effect once you’re seriously ill; once you get to that point, I think the only solution is medication. And, if it gets bad enough, hospitalization. Apologies for the TMI, but back in the early years, when I was in my 20’s, before my colon was removed, I used to get sick enough to have to be hospitalized 2-3 times every year. And when I got to the point of going to the bathroom 30-40 times a day or more, with a huge amount of bleeding, and a high fever, and constant pain that felt like razor blades inside my intestines – a point I would reach fairly quickly once I started feeling ill – diet was the last thing on my mind!</p>
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<p>Same here. I heard a top physician give a keynote speech at a ccfa event for families and patients and he talked about risk-benefit analysis. He said this exact thing – that people take more risks when they get sicker. He also emphasized, as someone did upthread, that Crohn’s itself, untreated, is risky and that the risk of surgery is higher than the risk of any medication. He also compared the risks of every treatment on a graph compared to other risks – being hit by lightning, being hit by a car, etc. It was a great reality check when you saw the risks next to those kinds of things because it’s lower than you think.</p>
<p>Sorry about my ignorance but what is a TNF-alpha level?</p>
<p>basically high levels of TNF alpha are associated with inflammation in the intestines, so drugs such as remicade attach to the alpha particles to stop the process from occurring therefore stopping inflammation</p>
<p>Humm…so is TNF alpha something that there is a blood test or some other test for. I’m asking because I was wondering if there was any way of measuring the presence of inflammation or any labwork that would indicate remission…other than of course feeling good.</p>
<p>there are CRP (C Reactive Protein) and ESR markers which are blood tests that can measure inflammation so for example if these levels are very high or out of normal range they could indicate a flare up, and when theyre lower or within the normal range could possibly indicate remission. the range of these numbers can be different for different people, for example my high might be someone elses very low</p>
<p>Thanks Leah, do you know if these are these tests that are routinely done? And if they are it would seem that over time it might be possible to guesstimate an individual’s normal range. I had asked my doctor if there was any test to indicate if the inflammation was gone or if it was just controlled enough to control symptoms and he just joked with us that he would take a look, indicating that the only way to know was to do a colonoscopy. I spoke to a friend with a family member who has Crohns and she thought there was a blood test.</p>
<p>A lot of people with Crohn’s have routine blood work done when they are on medications that suppress the immune system, but they can’t tell anything specific about the progress of the disease that way. You need a colonoscopy to see what’s going on.</p>
<p>I don’t have Crohn’s, but I’ve been having GI symptoms and my doctor thinks I may have microscopic colitis, something that can hit middle-aged women. He wanted to run a blood test to see if I have a “sensitivity” for Crohn’s since one of my kids has it. He said you can have the sensitivity but not have Crohn’s. I have a cousin whose daughter has Crohn’s and my cousin tested positive for it from a biopsy, but has never had a symptom. Has anyone heard of this? I don’t want to take the blood test because I’m concerned about a paper trail for insurance.</p>
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<p>Something else for people in this group to know is that they are more prone to Factor XI Deficiency, a bleeding disorder. It used to be called Hemophilia, Type C, but they’ve gotten away from that since it’s not as severeas hemophilia. HOWEVER, if you have it and undergo surgery (especially tonsillectomy), you may experience bleeding that won’t stop. That’s how we discovered that our middle child had it - he started bleeding a few days after his tonsils were out. We were told that each child in our family has a 50% chance of getting it. All three of our kids have it! So does my husband. His grandfather was an Ashkenazi Jew.</p>
<p>Doctors try to prevent it by either giving you fresh plasma or recombinant Factor VIIa. Our family’s doctor uses the Factor VIIa, literally THE most expensive drug in the pharmacy. About $23,000 per dose (a couple of years ago), and my husband needed two doses after having part of his thyroid removed. Thank God for insurance, even with a high deductible!</p>
<p>I thought I should mention this since some Crohn’s patients might need surgery, and this is REALLY important for people of Ashkenazi descent to know. The severity of the condition can vary during one person’s lifetime, so just because one does OK during one surgery doesn’t ensure there will be no problems during subsequent operations.</p>
<p>These tests are done for me every six weeks along with my Remicade infusions. They can kind of get a pattern together for example when I had a flare up my highest CRP value was 34 and the high end of the normal range is 20. you can see the trend based on the dates of the bloodwork, and when i know i wasn’t feeling well</p>
<p>Leah’s good point about patterns prompted me to add that you should be logging test results yourself in a notebook if they are happening regularly. We are copied on all my son’s bloodwork results, and I have a chart we log the values in. This gives an immediate sense of pattern and trend that is lacking from the results as individual tests. Son’s specialist has actually copied the chart several times for his own use. It also has been handy to say when particular tests have been run, so we know if it’s time for that again, or not.</p>
<p>Yes, its very helpful to have easy access to these records. I have all of mine online through Partners. Not sure if this is an option for other people but i imagine it would be</p>
<p>Leah- does your CRP go all the way down (to <5) when you are being treated? </p>
<p>My s’s CRP was 40 something prior to treatment. Hopefully it will be going down and be a reliable marker of inflammation.</p>
<p>Im sorry i meant my ESR was 38, The normal range for ESR at least indicated on my lab reports is 0-20 and since december the lowest its been is 22 but i felt fine in december so no it hasnt gone down all the way to five</p>
<p>Just posting again to give an update.</p>
<p>My son went to his LAC and lived in an apt, shopped and cooked for himself, did a research internship for 7 weeks. He felt generally well and was on prednisone (weaning ) most of the time. So happily, the summer did work out for him.</p>
<p>Yay, I’m so happy things went well and could be worked out. Thanks for posting!</p>
<p>Whattodo…good to hear that your son was able to make it this summer.</p>
<p>I apologize in advance for length of this, but I want to share something for you to be aware of for your sons with crohn’s.</p>
<p>I have had Crohns since 1988 (dx’d at age 26). My DS was diagnosed two years ago at age 19 at the end of his freshman year in college.</p>
<p>I’ve read all 8 pages of this thread and there hasn’t been any mention yet of what happened to my son and something that I wasn’t aware of after 20+ years of having it. </p>
<p>One common symptom of Crohn’s in males is anal fistulas. Its horrible and I wouldnt want anyone to have to deal with this.</p>
<p>Summer 09 first summer he was diagnosed, son stayed home, got well, learned about Crohn’s, what he could and couldnt eat. Got put on lialda and sulfasalazine. Did great. Went back in fall and didnt miss a class, led normal life. Had few flare ups on occasion. Kept imodium as emergency for those days when he had to make it.</p>
<p>Last summer, he developed an anal fistula. At first we just though it was jock itch or something after week at beach and hanging out in wet bathing suits. Eventually he was in such pain that he had me look at his butt. I knew right away we had to go to ER: a big portion was bright red, hot to touch, hardened.</p>
<p>Anal fistulas are complications of crohn’s and they seem to be common in men. I never heard of it in all my research for me or even when he got it two years ago.</p>
<p>Anyway, to make a long story short. (yea i know…this is short?) My son is doing great now but last summer was horrible. He had surgery to clear out the infection in the fistula mid July, drain it, he had to wear mini pads in boxers to collect drainage. It was just horrible and he was so devastated. Surgeon at home was actually a lot like OP’s first doc. Little to say. cut and dry. No real info.</p>
<p>Luckily, I was able to locate a GI and an anal surgeon in his college town 2 hours away and set up appointments before school started 6 weeks later. I felt he needed to have docs nearby in case anything got worse to give him the best chance of staying in school. He was also put on azathioprine by his GI to help heal the fistula, but we didn’t see any change. This surgeon much more personable, offering hope and said his patients have had the best success with humira.</p>
<p>I knew humira had major side effects, but we were concerned that the fistula would spread and tear a large hole into the colon which would allow stool to leak through uncontrolled and cause major life changes. Basically, we were desperate. </p>
<p>So we put him on humira starting in november '11 and he has done great. Doc has had to do several “procedures” during school breaks where he examines area while under general anesthesia. Said fistula isn’t spreading and starting to heal. He has a seton in (a small plastic tie connects fistula to colon that actually allows other areas of fistula to heal…this is confusing i know, but doc says its helping heal deeper parts of fistula…)</p>
<p>He has blood tests regularly to monitor his health while on humira.</p>
<p>Anyway, please be upfront with your sons and tell them to be aware of any “weird” feelings on their butts. I cried myself to sleep many nights last summer wishing I had caught it earlier. But he was a 20 year old guy and who wants to tell their mamma that their butt stings or feels weird or burns?</p>
<p>Again, no two cases of Crohn’s are alike at all. I have had relatively mild case, took prednisone during two pregnancies and breastfeeding! I’m not on anything now but have had flare ups over the years from time to time.</p>
<p>Best wishes to all of you! Crohn’s can be managed, but we have to encourage our sons (and ourselves??) not to be brave and ignore symptoms. Learn as much as we can and find a doc that we are comfortable with. </p>
<p>Again, good health to all!</p>
<p>Good to know mom2them. </p>
<p>I think my son tells me about all of his symptoms but I can imagine he might be embarrassed about something like this. Will mention it to him today or send him an email. He is saying “I don’t want to talk about it (Crohn’s)”.</p>