Hello.... I'm Alan, 57, and was diagnosed with Crohn's about 6 years ago, having had years of cramps, ridiculous toilet problems that were generally blamed on diet, shift work or smoking. The symptoms that finally got attention were excessive bleeding, chronic pain, the near inability to pee and feeling like death. My GP thought, after a rectal examination, that I may have cancer but also thought appendicitis was a possibility. With that in mind the hospital made some very speedy investigations but I have to say there are some awful tests which were too painful and gave no results but the simplest, colonoscopy, was the least painful and showed everything! I had surgery within two weeks of that and had about 30cm of bowel removed which included the appendix. Recovery was swift and my days of cramps were over...... Well for a few years. What I didn't expect was the 6monthly colonoscopies that followed, the new shoot it through bowel system I had and the vastly accelerating intolerance to many foods. But the latest thing to rear its head is possibilty more annoying than that. Initially diagnosed, two years ago as lichen planus, it now appears that my mouth has become intolerant of eating! Perhaps a bit dramatic, but jeez it's sore! The inside of my mouth, especially lower gums and cheeks, is raw and my best friends at the moment are mouth washes and ulcer pastilles. Anyone else getting this? I know sugar aggravates it, but then so does spicy, bread and sharp food such as crisps. Out of my diet for Crohn's reasons is , pastry, sugar,(as an additive to food or drinks)fruit. Should be out but can't quite do it, chocolate and liquorice allsorts, And out by choice, milk, yoghurts, etc. So pretty much a low calcium diet with zero fruit, zero alcohol, just given up smoking, definitely not overweight. Oh might help someone else... The biggest aggravation to my condition with the most severe results has been stress. Not an easy thing to get out of your life but if you can get away from things that worry you or panic you then do so.
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Hello y'all
- Thread starter Algibbs
- Start date
Hello Algibbs. Sorry you are having such a hard time right now. I am not familiar with your condition but want to send uou my support. You may try to post your question at the Extra intestinal manifestations forum and may be somebody will have an answer for you. What kind of medicines are you taking right now? Is your Crohn's in remission?
Hiya, thanks for answering, I have Crohn's, I've no idea what kind because I had no idea there were different kinds. It's not in remission. It affects everything from my mouth down and the lichen planus is another symptom that's just getting worse since two years when it started. Food intolerance is something I've got used to, alcohol intolerance is something I didnt mind, but having to arrange the day around toilets, ( to feel at ease, undisturbable, and setting aside enough time to actually do what needs to be done) is still the worst part of it all. But hey! what's good is I'm alive, I have a very supportive partner and I haven't had to have anything else removed. In that respect I've been very lucky. Next thing is to find out a bit more about what I have.... I haven't actually researched it because I didn't want to worry about what's still to come. Perhaps that's still a wise choice?
Sure, the only medication I'm on is lanzoprozole 30 - 60mg a day. Pain killers give me constipation so aspirin is about all I take but rarely. On flare ups I just reduce food intake and wait. Thing is I had most of these symptoms for 25 years or more before it was diagnosed. Constipation and cramps were a common occurrence. It was the bleeding at 40 years old that started me worrying but that was coincidal with haemaroids so missed for a further ten years. By the time I had surgery I had a lot of stuff going on. After surgery when everything (bowels) became super active is when the haemaroids became full blown and so two years later had surgery for that. That was the best thing I had done. Must have been how a woman feels when she's had a much needed hysterectomy! At this stage I get cramps once or twice a week, heartburn every day, diahreah three or four times a week and light bleed maybe once every couple of months. Currently have a very sore mouth which is a. Trip to GP Thursday. Sorry about spelling!
I am not a Doctor or an expert, but I think lansoprozole is for ulcers or reflux, not to treat inflammation by crohn's. It may be a good idea to go to your GI and talk to him about your symptoms. Have you had any Sedation rate test lately? Don't worry about spelling with me, English is not my main language so I am in the same boat.
Hiya, yeah the lanzoprozole is for reflux, if I don't do them I can just about guarantee to get the worst kind of heartburn and throw up. As far as any other medication? I was told, and have believed, for over five years that there is NO Medication for Crohn's, that though I've had surgery it will come back and there nothing to be done to prevent it. So with that I was booked in for six monthly endoscopes. Two months prior to the last I complained about heavy,(really heavy) bleeding and asked if it was piles.... The doc did an examination and said that I didn't have piles and booked the endoscopy. On the table for that... Can you check if I have piles while you're there please... Ha ha kinda.... Yes of course you do, Then sends me to see a proctologist that specialises in that field, Third degree haemaroids and surgery later, bleeding stopped and I'm almost human again. I haven't been back to the damned Crohn's specialist since. Two year later I am certainly feeling the Crohn's again but with the expertise that is available it does seem worth going through it again. However I am seeing the GP this am and I will now have a discussion about all this. I am beginning to feel a bit overlooked!
Yes, I have lichen planus as well....the lining on my gums actually peel and I have inflamed gums as well as heavy duty recession. It has improved since I stopped Remicadee . What I find helps me, is I hold Peroxide in my mouth for as long as I can, about 3 times a day. It doesn't burn and removes a lot of the infection and inflammation. I also use these little brushes in between my teeth instead of floss as the floss can cut inflamed gums. This combo has worked for me very well...Good Luck with this...inflamed, raw gums are no joke.
Hi everyone,
Wondered if any of you has seen a naturopath for food intolerance? I have had the hardest time with food intolerance while already gluten and lactose free. Been doing the Paleo diet for about 7 months now. The ND did a Carroll Intolerance to foods test. Looks like I am intolerant of fruit and can't have potatoe within 8 hours of grains. I am torn about this no fruit thing and afraid to add wheat/gluten back into my diet. She also gave me a bunch of supplements which I plan on taking. I'm currently on no Crohns meds.
Sacro-B probiotics
Vitamin D-3 4000 IU
Spirulina 500mg (iron and B-12)
Denatrophin PMG (for adrenal support)
Gentian/skullcap (for intestinal healing)
Any thoughts would be appreciated! Thank you!
Wondered if any of you has seen a naturopath for food intolerance? I have had the hardest time with food intolerance while already gluten and lactose free. Been doing the Paleo diet for about 7 months now. The ND did a Carroll Intolerance to foods test. Looks like I am intolerant of fruit and can't have potatoe within 8 hours of grains. I am torn about this no fruit thing and afraid to add wheat/gluten back into my diet. She also gave me a bunch of supplements which I plan on taking. I'm currently on no Crohns meds.
Sacro-B probiotics
Vitamin D-3 4000 IU
Spirulina 500mg (iron and B-12)
Denatrophin PMG (for adrenal support)
Gentian/skullcap (for intestinal healing)
Any thoughts would be appreciated! Thank you!