Crohn's Colitis Support Group

Crohn's Disease Forum

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HI little MAMA....I have crohns colitis......life goes on somehow. Keep your chin up and take your meds. I am on remicade and it took a while to work, then it worked, now not so much, but I'm seeing GI next week and we'll discuss next options. It does get a bit much sometimes, so I do understand what you're feeling, but this forum is amazingly helpful, so just keep coming back. We're here for you.
 
New to your group

Hi all, new to this group. . I thought having the combo of Crohn's /colitis was unique to me. :smile: look forward to learning more from all of you and sharing too.
 
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My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.

Can anyone shed some light please

an I join please? I have posted this as threas and then I saw this!
 
Hello Mummy, of course you can join. We're so sorry to learn of your son's difficulties. My very first thought was that you should most definitely change gastric Doctors. I can't imagine how your poor little boy must feel and you also as his caring mother. Perhaps other parents may chime in here to give you some support. I'm the one with crohns and I'm one of the older sufferers of this disease. Sending healing thoughts and prayers.
 
Thank you judith.
Hes such a sweet happy little boy and because hes soo happy he confuses everyone. Even when he tells you he has pain.
The dr who put his gastrostomy in will only see him if gp does referral again which je wont as ds already costs him too much. He was transferred to the children's hospital closer aas we were originally travelling 3hours to see the 1st dr. The dr who he now sees is pretty useless. Ive taken him to accident and emergency here too so we could see another gastric dr. But as he is already under a specialist nobody else would do much apart from start him on the mevberine.

I do hope (in the nicest way possible) that someone has had similar experience so we have a guide to work from.
 
Ever since I saw my doctor and he increased my dose of Lialda two weeks ago, I have been feeling worse and worse. Diarrhea, pain, nausea. I called his office and left a message for the nurse last Thursday, but didn't hear back. So, I called again yesterday and left another message. I got a call back that the doctor has been out of the office since last Wednesday, so I could either talk to my PCP or go to ER. Well, my PCP doesn't want to give me anything, and I am not going to ER. My gastro is not really helpful at all. My PCP is referring me to another gastro for a second opinion, but of course they don't have any openings until April 29th.
 
Good idea getting a new referral for a GI. It takes a while to get appointments with them. Maybe call in and ask to be put on the callback list if a patient cancels and an appointment opened up.

It would be in your best interest in the meantime to visit the ER if your symptoms to not improve or get worse to avoid any complications from medication.

But I also want to point out that you should not suddenly stop medication without first consulting a medical professional.

Feel better soon
 
mama21princess said:
Ever since I saw my doctor and he increased my dose of Lialda two weeks ago, I have been feeling worse and worse. Diarrhea, pain, nausea. I called his office and left a message for the nurse last Thursday, but didn't hear back. So, I called again yesterday and left another message. I got a call back that the doctor has been out of the office since last Wednesday, so I could either talk to my PCP or go to ER. Well, my PCP doesn't want to give me anything, and I am not going to ER. My gastro is not really helpful at all. My PCP is referring me to another gastro for a second opinion, but of course they don't have any openings until April 29th.
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My gosh, it's like listening to my own story!! I know how frustrated you are! I've been flaring for 1.5 years now an I can't get my current GI on the phone to save my life! My Rhumatologist made me a referral for a second opinion after she found a tumor in my colon that my current GI has yet to address. Unfortunately I have to wait until May 26th for my appointment! I hope all goes well for you.
Best of health to you.
 
Remicade is my miracle drug. One week after my 2nd infusion I had my first normal bm in over 10 years. I am now testing foods and so far so good though my diet is still SCD legal. I did sneak a tablespoon of ice cream and had no problem. I don't eat wheat and do not plan to so I can't report on that. Believe it or not I only have a bm every 3rd day. Kinda freaked me out at first but you would be amazed how quickly you revert to normal. My next infusion is 2 weeks from now then we'll try every 8 weeks. I am having some abdominal pain today. A burning sensation that is uncomfortable. That just started today so I will see how it goes.
 
I am new to this forum or any forum so I am happy to have found it. Reading some of the posts I have decided that I have it rather easy compared to some of you (sorry to say that). In saying that I have been debating on going to the Mayo Clinic because I am not "sold" that my doctor is doing anything to help me. I have been having pains along my left rib cage that goes around to my back for a couple of months and my doctor hasn't given me any suggestions to fix the situation.

It happens with almost anything that I eat (almost 2-3 hours after eating). Exercise seems to help but not all the time. I can't sleep through the night and my energy level has been declining. Does anybody have any suggestions?
 
I finally got a call from the nurse at the GI's office late yesterday afternoon. He wants me to stop the Lialda, and start prednisone. 40 mg for two weeks, then taper 10 mg every week. I hate prednisone. I haven't taken it yet for IBD, but I used to have to take it for my asthma. It gives me such bad heartburn.

CrohnsChicago- I am on the cancellation list, so hopefully something will open up a little sooner.

Angie's Mom-I'm sorry you are having so much trouble with your GI. May 26th? Wow! I guess I should be thankful for an April appointment!
 
Hi guys! Name is Sara, 22 from Canada, just diagnosed with CC about three weeks ago, been dealing with symptoms about 7 months, flare up for about 5 months. Been on Flagyl at xmas and now on 6 Mezavant for 2 weeks. I have about a 2 week window (when my midterm exams end) to experiment and try to start healing before my doctor puts me on prednisone. Trying EVERYTHING I can to avoid it! So far on day 10 of SCD diet (mixed reuslts- belly pain and cramps and nausea are next to none now, D about 2x in morning and then very small unhealthy BM couple-few times tapering through day, still passing mucous. but overall BM less frequent) but i wonder if the bit of improvement from the diet is only due to eating such a small amount. Afraid if i increased to normal intake I would be back at square one. Making Rick Simpson oil this weekend as a last shot in the dark! Has anyone tried this or know someone who has? Or anyone experience/success with mezavant or tips for SCD? Glad to have joined your group, rock on guys!
 
Welcome to the Forum Sara! I have found this site to have been a life saver at times! It really helps in so many ways. Be sure you check out all the support groups and gather as much info as you can. Not sure I know what a SCD diet is. We have different jargon here in the US. I think your 6 Mezavant is our 6 MP, and if so, that drug can take longer to work which is most likely why your doc may want you on prednisone to help relieve symptoms faster. I know pred sucks but it works. Hope you feel better soon!!
 
Hello fairly new poster here and I have Crohn's Colitis which is affecting the colon. The last colonoscopy I had at the end of December showed inflammation in the colon but my GI said my Intestines looked good at least. I have been on every possible medicine and now trying Stelara to see if it helps me any. If that does not work I am basically out of options.
 
My daughter was diagnosed with Crohns colitis 2 years ago because she was inflamed in three sep areas in the colon. The last colonoscopy showed only inflammation in the rectum so they rediagnosed her with probable U.C.... have any of you had the same thing happen?
 
Hope345 said:
My daughter was diagnosed with Crohns colitis 2 years ago because she was inflamed in three sep areas in the colon. The last colonoscopy showed only inflammation in the rectum so they rediagnosed her with probable U.C.... have any of you had the same thing happen?
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I just had the opposite thing. I've had UC for the last three years with primary disease in the rectum and sigmoid colon. I had a colonoscopy on Wednesday and my condition was changed to Crohns Colitis. I have to wait to see my doctor until after my biopsies come back and I currently have no idea what Crohn's colitis is!
I'm learning that its not about original misdiagnosis, but rather disease progression. Best of luck to your daughter, hopefully they are able to sort everything out for her!
 
So, I've been on 40 mg of prednisone for almost two weeks now. The diarrhea is better, but I am still having so much abdominal pain and cramping. Do you think the prednisone will start to help with the pain? I am so tired of hurting.
 
mama21princess you need to let your doctor know that you are still experiencing abdominal pain and cramping. Does the pain seem to have at least gotten a little better or worse since starting prednisone?

Also, is this your first time on prednisone? The more times you have to go on it, the different the effects can be on people. It does take time to hela, but after two weeks at 40mg it's more likely that you should be seeing some significant relief of crohn's symptoms in spite of medication side effects.

mama21princess said:
So, I've been on 40 mg of prednisone for almost two weeks now. The diarrhea is better, but I am still having so much abdominal pain and cramping. Do you think the prednisone will start to help with the pain? I am so tired of hurting.
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Mama21: So sorry to hear you're still in pain! Did you have tests that showed any narrowing or just inflammation? Reason I asked is because I never got pain relief from prednisone when I had a lot of narrowing. If I did it was after a good month of being on it. Let your doc know you are still experiencing pain. Maybe you can get some pain meds to get you through till the pain subsides. I wish you luck :)

A question for any of those who have been prescribed Lialda, I have a friend who has recently been diagnosed w colitis, completely out of the blue too. Never had any symptoms until 2-3 wks ago. Shes very active in sports and was very healthy. Her colonoscopy showed ulcers and bleeding in her colon. She was experiencing blood in her stool and severe cramping and D. Her doc put her on Lialda, which I had never heard of, and within a week she ended up w severe, debilitating pain in her lower back and butt. Sounds like it was sciatica. She was eventually hospitalized, taken off Lialda and given a cortisone shot in her hip. She got better, and was put on prednisone. Back to my question: Has anyone ever had these problems with a flare of colitis? Docs think they may be related re inflammation or a possible side effect of Lialda. Just unusual and was extremely painful to see her in that kind of pain. Feedback please.
 
This is my first time on prednisone for IBD. I've been on it a lot of times before for asthma, but that was usually only for a week at a time. There have been times the last couple of days when it has been a little better. It is pretty bad right now, though. My GI has never said anything about narrowing, but he doesn't say much at all anyway.
 
mama21princess said:
This is my first time on prednisone for IBD. I've been on it a lot of times before for asthma, but that was usually only for a week at a time. There have been times the last couple of days when it has been a little better. It is pretty bad right now, though. My GI has never said anything about narrowing, but he doesn't say much at all anyway.
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You need to be your biggest advocate w this or any disease. If your doc isn't telling you much, then you have to ask. Push him if need be, call a lot and speak to anyone over there that will listen. What I learned the most after all these years, you MUST educate yourself re crohn's and to not let the docs tell you how you SHOULD feel if your not! If you are still in a lot of pain, tell him and that you would like him to do something about it, and if he won't, then ask him to tell you who will. This illness is so vague that we need to be specific. Please stick up for yourself and tell your docs what YOU need. Praying for you!!
 
long time Chrohnie, you're so very right. But why do I feel guilty every time I leave the Dr. office? Last time I went in with a list, so I would not forget to tell him things, and he looked at it like it was poison. 5 items on the list, just FIVE!
 
JudithC said:
long time Chrohnie, you're so very right. But why do I feel guilty every time I leave the Dr. office? Last time I went in with a list, so I would not forget to tell him things, and he looked at it like it was poison. 5 items on the list, just FIVE!
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Wow!! I know good docs are hard to find and everyone likes different things in their docs. I personally need an empathetic doc who will take time w me and not look at me like I'm crazy. I had THE PERFECT gi doc when I was first diagnosed. He was a leader in the field and well respected and liked by other docs. Unfortunately, he retired. I took me two different docs till I found one who would work with me. A lot of docs get intimidated by those who ask questions and know their bodies well. I don't like those. I like those who are impressed w my knowledge and work as a team.
 
When I've talked to him about my pain before, I've gotten the feeling that he thinks I'm being a baby about it. My last appointment, I did ask him a question, and it felt like I was inconveniencing him.
 
Jajabinks said:
Anyone else have Ankylosing Spondylitis? :( seems this is worse than my Crohns now. I'm very scared...
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Hi, I just had an MRI on Saturday to look at my spine especially my si joints. They are thinking there is a good chance it's arthritis. I have to wait another 2 weeks to find anything out. I find the pain unbearable.

What are your doctors saying to you in terms of treating the ankylosing spondylitis?
 
The pain is horrible. :( my butt bones, tailbone, thighs hurt. I also get eye inflammation n chest pain. I now know when my back is flaring n when it's my Crohns. Two different flares to deal with....great! Sighs...there's a chance it won't show on imaging yet if you just recently got the symptoms so don't let the docs dismiss you.
 
Jajabinks said:
The pain is horrible. :( my butt bones, tailbone, thighs hurt. I also get eye inflammation n chest pain. I now know when my back is flaring n when it's my Crohns. Two different flares to deal with....great! Sighs...there's a chance it won't show on imaging yet if you just recently got the symptoms so don't let the docs dismiss you.
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Thanks, my Rhumatologist is fantastic, she has sent me for every test imaginable. Even when they come back negative she just sends me for more tests! My GI on the other hand just buries his head in the sand, if it isn't directly related to my GI tract he couldn't care less.

Let me know what your doc says about your treatment. Best of luck to you.
 
Angie I have been complaining for months about my tailbone/butt cheek pain, the doctor acted as if I did not even say anything, didn't even make a suggestion. Had it not been for support groups and the internet, I would be so lost. My GI didn't give a darn either about my complaints. I will let you know as soon as I see the rheumy. I am so nervous and depressed. Two diseases...sighs...
 
Hi. Does anyone else have involvement of the biliary system with their Crohn's? I have involvement at the ileum which has been my usual area but now am having biliary issues too and my GI is certain that it's my Crohn's.
 
Can I ask a quick question
lo is undiagnosed and hoping to get a diagnosis soon.
his stool looks like theres 'fibres' in them? Like hes been eating weetabix of something. Rather grainy andvery watery im gguessing its overflow as he suffers from chronic constipation.
Any ideas? Thank you
 
New to this group but have been reading threads and seeing my same
problems. I ended up with crohns/colitis late in life and have been with it
for about 8 years. Right now my only medications are 2 1/2 mg. of prednisone
daily and occasional use of Cortifoam. While my gastro dr. doesn't believe
in it, I've been taking LDN for a number of years. My GP agrees to writing my prescription. It certainly has not been a cure, but despite never really getting into a remission, I put up with symptoms and remain fairly healthy. Diarrhea,
big time gas, and bloating have been the worst culprits, but now there are some days when I actually am constipated....that is a new twist. I follow some
of the SCD diet but find I must avoid dairy, most raw veggies, and I stay
gluten free. I use lots of almond flour for baking breads, cookies, etc.

Glad to share with others...........
 
Has anyone been tested for food allergies?
My oldest daughter diagnosed with IBS has been suffering for 2 years and we just found out she is very allergic to dairy products (not lactose intorelant), almonds, egg whites, and allergic to wheat gluten. My daughter with either Crohns Colitis/U.C. has to wait until she is off meds to get an accurate result. I am so hopeful that a food may be triggering her inflammation. She is also seeing a Naturalpath today and we are hoping she can offer some input.

I am not completely against the Remicade/Imuran and Mesalamine but they dont target the colon as well. (however she is using the mesalamine enemas). It has been a blessing to get her off the Remicade because it wasnt working very well. It did eliminate the inflammation she had in 2 other spots of her colon and now it is strictly in the rectal area.

Please let me know if any of you have been tested for food allergies and if eliminating those foods eliminated inflammation. thank you
 
Long time crohnie I was given lialda too . Let me tell you severe frequent back aches , and chest pains that medicine sucks!!! Asacol same thing . I stopped my meds.
 
I was not tested for food allergies but at the suggestion of my nutritionist at Vandy I cut out all lactose and started drinking the 99% lactose free Kefir. Kefir is GREAT. I can only eat in the afternoon most days and the Kefir helps me have something in my stomach in the morning to take my meds with. I still get nausea, though now it is not every single day. I drink Lactose-free milk and I got some fabulous lactose-free cheese (after trying several nasty ones). I recommend anyone try it if they are having problems, give it a few weeks and see if it doesn't help a little. Every little bit helps.
 
Hi All, one comment and then a question:

First, I just read this entire thread and wanted to clear something up. Crohn's colitis is NOT Crohn's AND Ulcerative Colitis... It's Crohn's disease of the Colon only. Treatment is the same as UC, the difference comes when surgical options are slightly different.

Piggybacking on that, does anyone know if Crohn's colitis can ever spread to the small intestine? I've already failed remicade and so I'll start the new drug Entyvio next week. If that fails I have seriously consider removal of my colon, rectum and anus (due to fissures). I would hate to go through a surgery like that only to have Crohn's spread to my small intestine later you know?

Any feedback is appreciated. Btw - I was originally diagnosed UC but changed to Crohn's colitis after visiting Stanford Medical Center. Symptoms that changed my dx were mouth and nose ulcers, bad anal fissure, and the "look" of my colon ulcerations according to the Stanford GI. I've actually had the Prometheus bloodwork done that "confirmed" UC but Stanford says it can't discern between UC and C-C. Hope that info helps others.
 
I can't offer much, except to say that my first colonoscopy in the hospital had the GI doc thinking Ulcerative Colitis, based on what he saw inside. Everything was inflamed, and there was ulceration. But, biopsies and stuff were inconclusive, so he he went to "unsure" on the exact disease. Had a flexible sigmoidoscopy later, and what he saw that time was a little different, looked a little more Crohn's like, but again the biopsies were inconclusive. He updated his diagnosis to "probably Crohn's," and it was later confirmed by the Prometheus test. Although it was never brought up, I do have a history of mouth ulcers...not bad ones, but I always wondered where they came from, and only after the Crohn's diagnosis and reading up on it did I realize that it might be connected. (And actually since starting Humira, I don't think I've had a single one.)
 
I've been suffering from the effects of crohn's for 40 years now but mostly from the results of the surgery I had in 1971. Sections of my ileum, small bowel and several feet of diseased intestines was taken out. As result, by bathroom habits changed drastically. I have BMs 5 or more times a day and I need B-12 shots monthly. Fortunately I haven't suffered the severe cramps I once did when I suffered in my teens. In the past few years though I've had some issues with my urinary tract. I've been experiencing pressure and some pain when urinating and I can't just urinate without a BM as well. Upon my last visit to the urologist and given and exam he told me my bladder looked pretty bad.
I've had problems with kidney stones over the years too. I've been reading that crohn's can effect the bladder and prostate as well. I'm wondering if that is true. And if so, how many people are experiencing this crohn's side effect as well?
 
I've sometimes had urination set off a BM, mainly during a flare. This summer I thought I had a UTI, but the urine sample came up negative. Symptoms cleared up. Something occasionally seems a little 'off' but I can't quite place it. I'm having a flare right now and noticing that sometimes I have to sortof 'push' to empty my bladder doing a BM. Is this similar?
 
I don't know if you got my last reply. If not, this may be repetitive, sorry. Yes, I do have the same "push" to empty my bladder during a BM. The good thing is though that I now can empty my bladder completely. I'm taking a herbal supplement that has helped a lot, better than the prescriptions I was taking even. But the problem has not gone away. I've read that you can have fistulas in the bladder, like in the bowel region. I know the crohn's has been partly responsible for the several kidney stones I've produced over the years. Man this is frustrating!
 
malmer7 said:
Hi All, one comment and then a question:

First, I just read this entire thread and wanted to clear something up. Crohn's colitis is NOT Crohn's AND Ulcerative Colitis... It's Crohn's disease of the Colon only. Treatment is the same as UC, the difference comes when surgical options are slightly different.

Piggybacking on that, does anyone know if Crohn's colitis can ever spread to the small intestine? I've already failed remicade and so I'll start the new drug Entyvio next week. If that fails I have seriously consider removal of my colon, rectum and anus (due to fissures). I would hate to go through a surgery like that only to have Crohn's spread to my small intestine later you know?

Any feedback is appreciated. Btw - I was originally diagnosed UC but changed to Crohn's colitis after visiting Stanford Medical Center. Symptoms that changed my dx were mouth and nose ulcers, bad anal fissure, and the "look" of my colon ulcerations according to the Stanford GI. I've actually had the Prometheus bloodwork done that "confirmed" UC but Stanford says it can't discern between UC and C-C. Hope that info helps others.
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My daughter has Crohn's limited (at this time) to her colon. Crohn's colitis. Before the path report that found the granulomas in her biopsy samples, she was given sulfasalazine while we waited. Once the doctor got the report he told me we could just throw away the sulfasalazine, because she has Crohn's and not UC. So, I think the treatment options are different for the different diseases. She ended up on exclusive enteral nutrition and now Aza.

I also understand that if you have Crohn's and have a surgical removal of your colon, it could put you into remission but is no guarantee that you won't have the disease reappear in a separate section of your GI tract.

Did you end up having to make a decision about surgery?
 
In a note to my gp, my gi said I have pancolitis. Wikipedia says that means I have Colitis but the rest of the colonoscopy disputes this. I am confused.,

2
 
Colitis is more of a generic term. It doesn't mean "Ulcerative Colitis" necessarily. It could mean inflammation of a variety of sorts. Maybe UC, maybe Crohn's, maybe even caused by an allergy, etc....

Pancolitis means that your disease is spread throughout your colon, and not limited to one area of the colon. What it doesn't describe is how deep the inflammation goes.

I was really confused about that at first. I hope that helps.
 
UC and the need to urinate.
We have found that if my daughters increase their water intake, the feeling goes away. It has been a big issue for a long time, so this was such a blessing to solve.
 
I'm having aches and pains everywhere, but, oddly enough, not having any GI symptoms. Also having fatigue and a laundry list of other things.
 
Sometimes I get back pain also. Maybe it has something to do with all
the internal pressure caused by gas.......a great part of this fun illness.
 
I have gotten the twitching/spasms - I thought it was the Prednisone - GI said that could be the cause. Lasted about 2 weeks, then gone.
 
Angie4567 said:
Hi, another C-C person here, joining up! I am pretty sick right now - pain and heartburn like never before. After 4 years, I am 'only' on Asacol while I decide whether to go on something stronger - 6 Merc. Thought of Immune Suppressant scares me, so am getting a 2nd opinion soon.

Good luck to us all!
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I have horrible acid reflux. None of the over the counter drugs have worked so I tried apple cider vinegar. I started out 3 times a day and after about 2 weeks my symptoms were pretty much gone. When it does start to act up again I start back up on the apple cider vinegar and they go away. I haven't taken any pills for about 4 months now. Worth a try :ysmile:
 
Hello fellow Crohnies! (Can we call ourselves that? ....no? :p)

I have back pain sometimes but I also have scoliosis so that contributes probably more than anything else. When I'm flaring up, they always tell me to look out for back pain though -- they worry about your kidneys, your liver, etc (or so they've told me). The one time my back was hurting even a little during a flare, I called my doctor and he told me I needed to go to the ER right away and that he was sending an ambulance to get me. I nixed the ambulance because I was with my mother but it got the point across -- if you're flaring up and you have back pain, call your GI doctor, do not wait.

I'm curious if anyone else with Crohns has had immune system related symptoms outside of their digestive symptoms? I've got arthritis, and stress-related asthma (or that's what they call it when I had my one asthma attack), and vitiligo on my face (which is a skin pigment thing -- fortunately I'm very pale so it's hard to tell unless you're in certain lighting or you're my color-blind best friend.) I gather this sort of thing isn't super uncommon, but I don't hear a lot about it. What are your experiences?
 
I get joint pain, especially in my knees. I also have a worse time with infections, although I think that's a slightly different situation, possibly from the meds. I also have Glaucoma, but I don't know if that is at all related.

I've been getting back pain lately, and not joint pain...low, to the sides. I told my doctor, but they didn't seem too concerned. I've wondered if it might be kidney related, though. And I'm flaring right now, not having good luck with meds. I'm calling my doctor again tomorrow.
 
Your doctor wasn't worried that it might be your kidney when you were flaring up?

I had pain in that area (left side, lower back) during my flare up back in high school, and my doctor was a) furious that I waited 45 minutes to call him about it and b) insistent that I drop everything and go to the nearest emergency room immediately. It wasn't anything kidney related but he wanted to be safe.
 
Hi all I recently had a flare up which changed my diagnosis completely and am wondering if you all could be of assistance. I was first diagnosed with Crohns proctitis in May 2013. My first symptom started in late September early October 2012 and it was geographic tongue. My second symptom was actually blood streaked on otherwise normal stool this lasted for several weeks before changing to rocky black blood like stool followed by odd partial constipation. This lasted until early may 2013 when the bloody explosive diarrhea started. I saw my mothers first GI (MOM has UC with no prior family history, illoestomy 2013,-J-pouch surgery early 2014 done by different doctors Not affiliated with the first been nearly as perfect as possible ever since) he at first in December 2012 said I had a fizzure. His may 2013 diagnosis following colonoscopy with no blood work, and a cancer only biopsy was Crohns proctitis. I was given Canasa and put on my way this never really worked. I began Cortifoam with canasa, Oct 2013, also didn't work. Jan 14 started Hash oil, stopped cortifoam/canasa stopped the blood, regained control but had watery diarrhea 1-3 times a day until Dec 2014. Dec 2014 full stools returned somewhat with the normal watery stools half the time. End of December blood returned like in the beginning -Full flare up Jan 18th -Feb23. 2015. Went to hospital Feb 22/3 spent night full CT scan and blood work revealed, light inflammation of ascending colon to hepatic flexure with no inflammation anywhere else. Blood work revealed sedimentation rate 31 when normal 15 Creative was 1.8 White blood cell count at 12.1 The diagnosis was set as Crohns Colitis. Put on 10 day Cirpro/flagyl combo and 7 days of Canasa. Since March 1st I have been perfect and my geographic tongue is gone. My doctor says that this flare was bacteria only and that it wasn't the disease however he thinks my diagnosis is the same though he would like to do more tests when I return from Michigan(law school). I have had 1 bm per day full stool no water every day since. I have ate all old trigger foods and have had no reaction at all almost no gas either. I am only taking VSL3 and hash oil to this point. My question to all of you is 1. Have any of you had similar stories? 2. Do you think its possible I was miss Diagnosed initially and may have had some bacteria the whole time(2.5 years). 3. Does anyone know about colon based Tuberculosis or MAP?

Any information would help I am curious to know all opinions, so lets hear it.

My
 
CrohnsChicago said:
What you are able to eat/the type of diet your body is able to tolerate depends on your condition and the symptoms it presents.

Do you find eating to be a painful experience/one that produces D and other symptoms? Also, do you have obstructions/fistulas/abscesses/etc?

Personally, I can eat anything in moderation with the exception of broccoli. My body does not enjoy breaking down this high fiber food and it causes me lots of pain that can bring me to tears.

I also tend to stay away from milk it makes me bloated and gassy. Greek yogurt, eggs and aged cheeses are fine for me personally because they have less lactose in them. I also juice and make smoothies. Those have proven to be the most beneficial and work pretty fast in making me feel healthier and like I have more energy.

But again everyone is different and not everyone responds to food the same way.

Have you ever tried an elimination diet before to try and pinpoint food that your body may not accept as well as others?
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Hi CrohnsChicago and anybody who is willing to share their wisdom,

Thank you for your post. I wanted to ask you about your experience in identifying problem foods for you.

I was diagnosed with Crohn's-colitis last Tuesday (I have ulcerations in my sigmoid colon, two segments of my transverse colon and two segments of my ascending colon) am so confused about what is okay to eat and what isn't. Everything I eat results in abdominal pain and I find myself running to the restroom to either have a bm or "explosive" gas that produces blood and mucus only.

Anyway, I began a low fiber diet two weeks ago and went on Apriso one week ago. I no longer have diarrhea and the frequency of urgent trips to the restroom has gone down. However now when I have a bm that produces something other than gas, blood and mucus, it is pretty painful.

Since I am in a flare, should I continue a low fiber diet, or should I add fiber to my diet to help with the movement along my colon? Also, I am considering going on the AIP Paleo diet to figure out what my trouble foods are. How did you identify what bothered you and what didn't? Are raw vegetables and apples with skin to be avoided at all costs?

I'm sorry that this was so long and a bit tangential but I'm so confused and have no idea how to manage the symptoms of this disease that I have been newly diagnosed with. The information on nutrition and Crohn's is conflicting, confusing and vague and I'm just lost and frustrated and kind of scared.

Thank you for taking the time to read my post.
 
I think the SCD (Specific Carbohydrate Diet) is a good guide, and I have followed the basics of that ever since becoming ill with Crohn's/Colitis. My own personal change to
that diet is that I do occasionally eat rice and quinoa. and the only dairy I have is the Friendship brand farmers cheese as an ingredient in the almond bread and some other SCD recipes. You can bake all kinds of goodies with almond flour to replace wheat flour. Cooked fruits and vegetables, homemade chicken soup, eggs, fish, chicken,
stay gluten free (no wheat, corn, oats, potatoes, etc.) and try to eliminate as much sugar as possible. I use honey and agave. It is a restrictive diet and makes dining out
difficult, but, for me, it is worth it.
 
My daughter also has Crohn's in her colon. When she started to heal and her BM's became more formed, she cried a lot in the bathroom (sometimes screamed). It was a process. As the healing continued the tears started to decrease. The process took weeks. Now the pain from passing formed stools is gone. I hope that your pain is from the same situation, and it means that things are healing.

We tried SCD and it didn't work for her when we tried it. But, that said, I think we have retained a lot of the diet. No dairy except for home made SCD yogurt and certain cheeses, baking with almond flour and limiting gluten. Honey as our sweetener for her. The interesting thing is that, because she is so young, what she eats is very instinctive. She tells me that she doesn't want a sandwich with regular bread, or that she would prefer a sliced green apple (skins on) with plain yogurt for breakfast instead of the cereal that her siblings are scarfing down. It's really interesting!

But I have to tell you there is no gluten in potatoes. And they are a major staple for her, particularly requested with fresh garlic and rosemary and olive oil. Maybe works for some and not for others.

I think the problem with fresh fruits and veggies come when a patient has a stricture. But you could ease into them with baked apples, and roasted or other cooked veggies?

Anyway, I hope you keep us posted on what has worked. It's so hard to get through the diagnosis, but it sounds like you are ready to get to work for your health!
 
Hi Meliss@,

Have you tried any rectal medication like suppositories? I know they're not very pleasant to use but they can deal with inflammation right at the lower end and can be very effective, and they don't have to be used long-term.

I am currently having a bit of a flare that mainly seems to be proctitis, and so I am taking a 4-6 week course of Pentasa suppositories which have really helped with the pain of going to the loo.

It might be worth a try, otherwise you can get into a vicious circle of the pain causing you to avoid doing a BM and then being tense because of the expectation of pain and it all just seems to get worse.

Good luck.
 
Hi,newbie crohns coiitis martyr here,although as you can see from my posts I'm an ardent supporter of this great forum.I was first dx'd with Proctitis in 2006 and have used suppositories since.After some probs late last summer and many of the usual tests I've now advanced up the ladder...Oh happy days !!! I'm also waiting for a gall badder removal as poyps were discovered accidentally (?) during the tests.Gastro said today to continue using supps (Asacol) as and when.They have served me well,so far.
 
Hi everyone,
So I just got back from seeing my GI. Remicade and Humira are no longer working for me and I am in a sever flare complete with fistulas and over a foot and a half of diseased bowel. My GI told me he can't help me any more and is sending me to another doctor who is more skilled at dealing with "difficult" cases.
If the drugs don't work, what's next? He says I'm not a good candidate for surgery because he doesn't think I will heal well...

Now what? Any one else have this happen to them?
 
Hi Angiesmom iv not had that happen, but did your doc say why you wouldn't heal well, seems an odd thing to say!!! Just wondering because what if surgery turns out to be your only option at some point? , best wishes
 
mandyk said:
Hi Angiesmom iv not had that happen, but did your doc say why you wouldn't heal well, seems an odd thing to say!!! Just wondering because what if surgery turns out to be your only option at some point? , best wishes
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He indicated that because of the level of diseased colon there are no pieces of colon that can be re sectioned together safely.

I feel so lost! To make matters worse, the new specialist can't see me until Oct 14th!
 
Aw hunnie, ok that explains why he said that.. Why the heck do we always have to wait ages for appointments when we are at our wits end with pain and worry, it's a darned crime if you ask me!!!. I really hope they can find something to work for you hun, it's a blooming nightmare getting stuff sorted out but I hope they do asap. Wishing you all the best, I'm here if you want to have a moan or any thing you think I maybe able to help you with.. Try and keep strong hun .
 
I'm just wondering if any of you get tail bone pain at all. I have Crohn's/Colitis so I get the best of both worlds. I'm in a flare right now and I find I'm having low back pain near my tailbone.
Anyone else?
 
Angie's Mom, do you feel the pain directly in the tailbone? I do have tailbone pain but only when I have pain in my inflamed iliosacral joint as well. Have your joints been checked for inflammation yet?
You tried Remicade and Humira, right? I'm not familiar with biologics in the US, but what about Simponi, for example?
 
Charlotte. said:
Angie's Mom, do you feel the pain directly in the tailbone? I do have tailbone pain but only when I have pain in my inflamed iliosacral joint as well. Have your joints been checked for inflammation yet?
You tried Remicade and Humira, right? I'm not familiar with biologics in the US, but what about Simponi, for example?
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Hi Charlotte,
I was diagnosed with sacral illitis, so I'm VERY familiar with that pain unfortunately... The tailbone pain seems to be separate from that. I have an appointment to see my Rhumatologist in 3 weeks and I imagine she will run a battery of tests.
So I'm not sure about your level of disease, but I'm wondering if you ever get vaginal pain as well. When I'm flaring I sometimes get stabbing pain and the sensation of having to urinate. I suspect this is a fistula. Any thoughts!
 
Hi Angie's Mom,
Oh, I'm sorry you are also very familiar with that kind of pain as well. As if it's not enough having Crohn's, right?
Well, I sometimes get ovary pain when I'm having my period but only when I'm flaring or having pain already, otherwise not, then I'm totally fine. Weird, to my mind. I did not have vaginal pain or the sensation of having to urinate. I'm crossing my fingers that it's not a fistula. Maybe the area is very sensitive in general when some tissue next to it is inflamed? Also, you have to pay into account that a swollen small or large intestine touches other organs much closer than it would when it is not swollen due to inflammation (it swells towards the lumen but also to the exterior). I also heard that the mesentery tissue can cause cramping-like symptoms as well when it is too active in the abdomen. Many many possible reasons, to my mind. Does not necessarily have to be a fistula. Do you already have one?
 
Hi Charlotte,

I do have a fistula but its not there. I'm a bit of a mess! I seem to have a little bit of everything including a chronic ear infection that caused vertigo! I see my new specialist in October, lets hope he can help.
 
So I've started getting really dizzy. It lasts the better part of the day and makes it so that if I move, turn or bend over to quickly I almost fall over.

Any thoughts on why this is happening? Blood loss?
 
Have you had your Blood Pressure checked lately ? Low BP can cause dizzy spells.
How much blood are you losing and for how long ?
Don't take chances with new symptoms,get checked out.Better safe than sorry eh ?
 
scottsma said:
Have you had your Blood Pressure checked lately ? Low BP can cause dizzy spells.
How much blood are you losing and for how long ?
Don't take chances with new symptoms,get checked out.Better safe than sorry eh ?
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My bloodpressure has always been ridiculously low 92/53, but I didn't even think about it dropping. I've been losing about 1/2 cup (125ml) or more a day since mid July. It's been a bit more over the last few weeks though.

So frustrated!!
 
I was told earlier this year that I have Crohn's Colitis. How can you tell if you are completely emptied. I thought I had read that one of the symptoms was that you don't feel like you have completely evacuated.
 
Angie's Mom said:
My bloodpressure has always been ridiculously low 92/53, but I didn't even think about it dropping. I've been losing about 1/2 cup (125ml) or more a day since mid July. It's been a bit more over the last few weeks though.

So frustrated!!
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My blood pressure always tends to be low.
 
ronroush7 said:
I was told earlier this year that I have Crohn's Colitis. How can you tell if you are completely emptied. I thought I had read that one of the symptoms was that you don't feel like you have completely evacuated.
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That's called Tenesmus Ron.I have it and I only know I'm emptied when I start to feel comfortable.Usually by noon.I get fed up of running to the bathroom and finding it's either a false alarm or not worth the bother.Of course we have to bother,just to be sure.
I find it especially annoying during the colder months,having to fight my way through layers of clothing.:poo:
 
ronroush7 said:
I was told earlier this year that I have Crohn's Colitis. How can you tell if you are completely emptied. I thought I had read that one of the symptoms was that you don't feel like you have completely evacuated.
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Unfortunately, for me anyway, there isn't any way to tell if you are empty. Part of the issue with Colitis, is that the inflammation is right in the rectum. When stool gets to the rectum it sends a message to the brain saying "hit the can". For us, blood, mucous, swelling all send the same false message.
 
Angie's Mom said:
Unfortunately, for me anyway, there isn't any way to tell if you are empty. Part of the issue with Colitis, is that the inflammation is right in the rectum. When stool gets to the rectum it sends a message to the brain saying "hit the can". For us, blood, mucous, swelling all send the same false message.
Click to expand...

That's my main problem. I get no warning and just have to get to the loo NOW!! I also find that there doesn't seem to be any 'storage capacity' - the reason I have to go so often is not due to loose stools, but that as soon as any gets near it has to come out, rather than waiting for any more, hence lots of small stools and urgent visits. The mucous is another attractive issue!
 
scottsma said:
That's called Tenesmus Ron.I have it and I only know I'm emptied when I start to feel comfortable.Usually by noon.I get fed up of running to the bathroom and finding it's either a false alarm or not worth the bother.Of course we have to bother,just to be sure.
I find it especially annoying during the colder months,having to fight my way through layers of clothing.:poo:
Click to expand...
If the tenesmus is happening, doe that mean I am in a flare?
 

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