Thanks so much for taking the time to answer all of my questions, NCOT. I'm so sorry that you've been dealing with all of the issues you have. My iritis also started 3 years ago, coincidentally...
Hi NCOT, Sorry to hear of your low back issues. That's how my original flare of Crohn's presented, first with horrible SI joint pain, then came the diarrhea and other joint pain along with other...
Thanks for your explanation, dbrookenz. I almost asked if you had Crohn's since you hadn't mentioned it, but it's good to know that the flap surgery is a relatively successful option for a Crohn's...
Glad to hear you're hanging in there. I'm sure it's really hard to stay positive. I've been looking up information on fistula surgery options. My current colo-rectal surgeon is super conservative and...
Hi Susie, Hmm, interesting that Celebrex is used since it's an NSAID. I thought those were contraindicated in Crohn's since it can cause a flare, but you said it doesn't? My Rheumatologist never...
Oh wow, I just realized I didn't enter my thread topic correctly. Is that something I can change? Sorry to hear about your issues with Prednisone. How high of a dose were you on? I know it's not...
Yes, I've seen a Rheumatologist since my diagnosis 9 years ago. I have Crohn's related inflammatory arthritis, so it's not osteo, it's auto-immune related. I've been on Imuran with the Entyvio but...
Ah, OK, that makes sense about your knee. I should've clarified that I had my knee drained again just this week. It was stable there for a while but then blew up again this last weekend after I ended...
Oh yes, when I had my knee drained (6 syringes worth :0! ) she also injected some steroids into my knee, and I've had extreme relief with that plus the high dose steroids. So your joint pain just...
OK, I just looked at my labs my Rheumatologist gave me, and one of the diagnostic codes is "spondyloarthropathy" which I looked up on arthritis.org but it's kind of confusing since it says it may or...
Thank you for your guidance and suggestions. What else besides the Crohn's would cause swelling and inflammation? She's sending out the fluid to the lab to get tested, would that cover all the bases...
Hmm, well yes, the arthritis.org does say that Crohn's-related arthritis doesn't cause damage. I did read that before and for the last 9 years I thought that it didn't, but then this year I stumbled...
Hi Susie, Thanks for the follow up. I don't believe I had my knee x-rayed, just other joints that had been affected. I'm not trying to dispute you, but do you have any links about Crohn's arthritis...
I have Crohn's but with it comes inflammatory arthritis (and iritis). My GI has prescribed me oral steroids in the past but usually starts off with a certain dose and then decreases every week. I'm...
Hi dbrookenz, Thanks for sharing your experience. Did you have a high fistula? Also how long is the recovery supposed to take? Can you not exercise for a long time?...
Unfortunately, I don't think sulfasalazine did anything for my arthritis. I took it when I was first diagnoed in conjunction with prednisone, but I ended up needing Remicade to get out of the...
Hi Sparkleplenty, Wow, I'm so sorry that you haven't been able to get relief from your crohn's without having joint and other issues. Do you have Crohn's related arthritis or is the joint pain only...
Thanks, Straydog. My Rheumatologist never mentioned it as an option, and I do wonder if the reason why was because I already have eye issues....
Thanks, Caia. Is the Plaquenil for pain only or does it help with inflammation? I'm fine with dealing with the pain, I just want something to reduce the inflammation....
Hi Susie, Thanks for your reply. I will check into Beave's posts. I have had major pain with my Crohn's arthritis in the past. I usually never take pain medication even when in pretty severe pain....
Hmm, I had thought I posted already, but my post seems to have gotten lost. Anyways, I have heard that Entyvio can cause joint problems, but my initial presentation of Crohn's started with arthritis,...
I have inflammatory arthritis. It’s not osteo or rheumatoid, but it’s similar to rheumatoid, it’s just from the Crohn's inflammation. I mentioned in my post that I’m using steroid drops for the...
Thanks, Susie. I do know steroids suppress the adrenals. I’m not fond of taking sterilds but I’m starting to reach a breaking point. What do you take for your arthritis?...
For those of you who are on entyvio, what do you do for extra-intestinal symptoms. I had been doing well on Entyvio for 3 years, following a stricter version of the Specific Carbohydrate Diet. I...
I don't have RA, I have Crohn's disease with extra-intestinal manifestations of inflammatory arthritis and iritis (currently). I'm on Entyvio and Imuran which is controlling gut symptoms, but my...
I've never had hair loss from anything before except for when I took Methotrexate almost a decade ago. I've recently noticed a lot of hair shedding, and I've been trying to figure out the cause, but...
Hi Mark, Thanks for sharing your experience. No need to apologize. It's interesting how you happened upon enteral nutrition, and don't feel bad about not doing it solely, since it doesn't sound like...
Hey Canada Mark, Thanks for your post! I didn't realize you also were doing enteral drinks as well. I had recently started adding Oil of Oregano drops again along with Cinnamon oil, but that wasn't...
Hi Big Betty, I'm checking in with great news! I posted this on the forum so that other people could see if they weren't following this thread, but I just had my CRP come back and it went from 55 to...
I'm so happy I can come here to post something positive. Here's the short version, after beginning to flare on Imuran, I started enteral nutrition, a liquid diet, and in a little less than 3 weeks my...
Thanks, Big Betty. :) I am actually on Azathioprine right now, and I just found out yesterday that even though I was in the therapeutic level a few months ago when I got tested, I'm not anymore. So...
Hi big betty, Thanks for the response and encouragement! Great for you that you're almost up to 4 weeks. You have a great attitude about it. After today I'll have finished 2 weeks. My gut feels...
Hi Big Betty, I'm subscribing to your post because I'm doing enteral nutrition myself, and you're inspiration to me. Are you hungry at all on this? I'm incredibly hungry and don't have a lot of...
This is interesting that you posted this, because I'm currently doing my own version of enteral nutrition. I'm making mine with maltodextrin (you can get organic tapioca maltodextrin or rice...
Have you been to a rheumatologist at all? You can have crohn's-related arthritis flare independently from your bowel symptoms, but of course you can have swelling not related to crohn's. My last...
I agree that there are multiple factors that can contribute. Interestingly there was a study done in which Remicade was used to treat depression:...
Hi minnietoy, Sorry to hear of all your issues. I agree with Beave on having your levels tested for Imuran. I've had it done and it took me a few months and upping my dosage twice to reach...
I've been on prednisone for the better part of the year and just finally have been able to taper off, thank God! Since I dropped down to 5 mg, I've been having a lot of anxiety and some mild...
I'm normally on the Crohn's board, but I have a few questions that hopefully someone can answer for me. I have two sisters, and we grew up in an alcoholic household. I've dealt with some depression...
Sorry to hear about your flare during pregnancy. I had to go on IV steroids during my second semester and then went onto oral prednisone after. I was able to completely taper off prednisone before I...
I was really hesitant to take it and did my best to try and avoid it but now that I've been on it for almost 3 months, I'm glad I started. I'm still on prednisone after having to have been...
Some people with IBD don't have elevated CRP or ESR rates even while flaring, so just keep that in mind if you do decide to get the tests. My CRP is a really good indicator of how inflamed I am...
Hey Michael, When you did AIP did you also eliminate starchy foods on AIP as well, as in no sweet potatoes, plantains etc? I did SCD for about 2 years with no real improvement, and then I did AIP...
Wow, thanks for sharing. It'd be great to have options for drugs that don't suppress our immune systems and all the possible side effects that can come along with it....
That's pretty interesting. I've seen few articles about remission in Crohn's disease from a fever. Here's one, though I don't know if I can get the URL to link properly:...
I did Methotrexate injections with Remicade. The only side effect I had was some very minor hair loss in the beginning, and it wasn't noticeable at all, which eventually stopped. Unfortunately the...
Congrats, I'm glad Entyvio is providing some relief! I'm hoping the longer you're on it the better you symptoms become and you can get into remission. I'm sure you're happy to be off prednisone! I'm...
Sorry I don't personally have any advice, but if you don't get any replies here soon, you may try posting this on the Ulcerative Colitis forum since it moves faster and they may have some suggestions...
barnsbury, Thanks for the positive note! I will try and not freak out, and it's good to know yours stopped falling out and grew back. I'll just be thankful that I started out with thick hair, so I'm...
Sibby, Sorry to hear about your issues with Imuran and the hair loss. I'm glad it stopped though once you got off it. UC since 98, Oh no, I'm sorry youth air loss hasn't stopped yet! I have heard...