Hey it has been a while. I sort of dropped off in January when I finally had my first resection. My small bowel had built up A LOT of scar tissue with very narrow (5mm) strictures that were...
Hi all, As mentioned in my previous post, I am having open resection of 1-2ft of small bowel in about 2 weeks. There are 2 areas in which I have questions. Maintenance Meds : My doctors insist on...
The doc just emailed me and said that because I'd recently had a perforation that lap was just too dangerous. Thanks all for your responses....
The docs got the results of my MRI and agreed that surgery must be done (strictures are very narrow with lots of scar tissue.) I will lose between 30 - 60 cm (1-2 ft) of small bowel depending on...
I'm so sorry to hear that you're having such a streak of bad luck. What diet are you following for the IC? Where are you located? In some countries / regions there are special assistance programs for...
Bad, bad, bad, idea. Raw milk -- and a lot of other dairy for that matter -- has been casually linked to Crohn's via MAP. If you want to explore the sanitation premise I recommend trying helminthic...
ski bum -- insurance is ok for the surgery itself and hospitalization, but I just maxed out the medication part (thank you Entocort) so I am going to be getting my meds from Canada right now (they...
Wolfie -- what maintenance meds did you use after surgery? Asacol? I already had the SBFT before the MRI and the worst stricture was 5mm in diameter. Homeboy -- thank you for the recommendation. Did...
Wow I am blown away by your accomplishment! I just spend a few weeks on TPN and thought THAT was challenging -- congratulations!!...
The liquid SCD diet is a major pain, much like the regular liquid diet. I make almond and coconut milk by blending almonds or coconut in spring water and then passing it through a cheese cloth or...
I was recently hospitalized with a small bowel perforation. I have actually been kicking and screaming for surgery for almost a year because I feel that my strictures have grown unmanageable and they...
Homemade chicken broth with a bit of sea salt is my fallback for the worst days....
I was on 80mg / day in the hospital and hated it ... but sometimes the pred is a necessary evil (I prefer to use it for less than 5 days if possible.) I guess it depends on your situation. For...
I did a full-blown colon cleanse with psyllium and bentonite a year ago and got all kinds of black putrid gunk and parasites out of me. Despite the good results, this was incredibly foolish on my...
I was doing well at avoiding surgery, until I spent 3 years off all meds and not following the diet I was doing (SCD.) Basically I ate a bunch of junk food and didn't take any medications for 3 years...
I also had success on the SCD, however, I fell of the wagon for a few years and that is when, I believe, I built up a lot of scar tissue because I was pigging out on all kinds of junk food for about...
I was able to purchase a large life insurance policy even after my diagnosis with Crohn's because, at the time I applied, I was not on any mediations and was controlling my symptoms with SCD alone. I...
Nebraskagirl -- I would try the Specific Carbohydrate Diet (SCD) if I were you. There are many books about it on Amazon. I also wouldn't write off your doctors completely ... there are certain...
I have strictures in the worst kind of way. My doctor said that Remicade might be a bad idea in my case as the rapid healing could actually cause additional scaring and narrowing or occlusion of the...
It sounds like a "standard" flare up. My understanding is that temperature elevation can occur in a flare up without necessitating you go on anti-biotics. Do you have any meds you can take in a flare...
Funny you should mention coconut ... I am in the process of making coconut-almond milk right now. I also didn't know that trader joe's had an SCD legal brand. Tell me, with regards to LDN do you (or...
My CD came on almost exactly the same way that your did and on my 21st birthday in college ... I would suggest trying the SCD or another diet to see if you can avoid being relegated to a lifetime of...
I hope to use LDN + Sulfasalazine + SCD after my surgery. Of course, I need to sell my GI on this idea, but I think if I agree to do Sulfasalazine my GI might cave in and agree to LDN. The...
Oh I thought you had scheduled another surgery, but must have confused you with someone else. That's great news -- congratulations!...
The weight loss has been mostly off my middle and had started before I got sick. I was actually stronger and able to lift more at the gym when I weighed 159 (immediately before my hospitalization)...
Hello everyone, I am taking antibiotics (see signature) for the next few weeks until surgery. I was hospitalized with a perforation in the small bowel, which was the reason they put me on the...
As mentioned before, I have -- and will be -- taking 1500mg of Flagyl per day until surgery. I had horrible psychological reaction to it at first, but now after more than a week seem to be doing much...
I was recently in the hospital for 6 days on 80mg of prednisone (actually the equivalent dose of hydrocortisone, which is well north of the prednisone dosage) and I started having problems by the...
Hello, I guess it is impossible for me to know for sure if all of the scar tissue is the result of my disease from 10 years ago ... but the first couple of times I saw my current GI in 2006, she...
I am taking 1500mg per day of Flagyl and 1000mg per day of Cipro for the next 4 weeks because I just got out of the hospital with a ruptured small bowel and the docs are preparing me for a resection....
I am in a similar situation (having surgery in January) and the docs were going to have me on 40mg / day of prednisone with taper right before the surgery. Instead they elected for me to use Entocort...
Hi everyone -- first of all, thank you for all your responses. I have read, re-read, and will continue to read each of them careully. I am home from the hospital, and after reading some of your...
SO = Significant Other She really isn't handling this whole situation well at all :-( I'm not sure whether I should nip the whole thing in the bud right now or wait until after the surgery to deal...
Wow 10 days in the hospital sounds like a real bear! I was hoping that the recovery time would be shorter, but I keep hearing that I should expect a pretty major surgery. The doctors are going to...
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Yes I saw my GI doctor a week before it happened. She said I did not have any signs of inflammation (from doing an exam and blood test.) There was one warning though, for the past year or so -- no...
Point taken. I am going to lay low (not go out in public much) to avoid this risk. I don't want to read into what you said too much, but it sounds like 6 weeks on steroids is probably not going to...
I could ask them about that, but I don't know if my doctor would go for it because I have done so well on the steroids, whereas they have no idea how I would actually do on enteral nutrition. I am...
Hi Blosson and thanks for your response. The other 25cm section is not one continuous, long stricture, but rather several short 1cm strictures separated by, what appears to be, otherwise healthy...
Hey everyone, it has been a little while. I was admitted to the ER and am currently hospitalized because the area above my stricture suddenly ruptured. Luckily the rupture somehow managed to heal on...
I usually do exercise regularly, but when the stricture is acting up (like it is today) I just can't seem to muster up the will to go for a run or lift weights. As a result I am exercising more like...
Yes I can definitely relate. Some days are great and others really suck. Anti-depressants have helped as does staying on top of your Crohn's and doing everything you can to keep things under control...
Bump ... this stricture is giving me problems today (yet again.) It's making a lot of noise and causing pressure to build up, but no outright pain so far. I don't think I am going to be able to avoid...
How much prednisone are you taking? When I was first diagnosed, they put me on prednisone and I ended up with an appetite like pavarotti -- I ate probably half a dozen doughnuts in one sitting (which...
This is an area where the Specific Carbohydrate Diet (SCD) can really shine. I would suggest taking a look at it as many people have reported it helping with yeast problems. Best, CH...
I just had a follow-up appointment with my GI doctor and here were the results: The good: + No signs of inflammation + She said I looked heathier than anytime in any of the years I have seen her...
I have osteopenia from prednisone ... I take the Freeda SCD line of calcium, vitamin D, and multi-vitamin. So far there have not been problems with constipation....
Mine spread like wild fire ... from the terminal ileum to the jejunum. Interestingly my terminal ileum is now clean with no signs of disease....
I screwed up a couple of relationships right after I was first diagnosed (and was taking prednisone) because the steroids caused me to have some serious issues with anxiety and depression, however,...
I initially gained a lot of weight when I was just taking meds ... I gained weight on prednisone and then really started to gain weight when I took remicade for some reason (healing?). I didn't start...