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10-06-2014, 12:44 AM   #151
Hope345
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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.
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
10-28-2014, 01:59 PM   #152
ronroush7
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I just found out recently that the Crohn's has moved into my colon.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-29-2014, 10:37 PM   #153
ronroush7
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Anyone else with Crohn's Colitis have back problems?

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10-30-2014, 09:50 AM   #154
cleuger
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Yep I do I have really bad back pain sometimes not sure what it is.
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Diagnosed 10/02/2012 Crohns Colitis
05/28/14 Surgery Abscess due to Fistula
09/18/2014 Surgery Total Proctocolectomy
rectum removed and closed up.
Best Decision I ever made.

Gastro Released me said I didn't need meds any longer

Have 3 kids only 1 at home 17 yr old is Type 1 Diabetic


Currently Taking
Tramadol
Xanax
Multi Vitiman
10-30-2014, 06:07 PM   #155
Elektrikhd
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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.
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Crohn's dx in 2012, 19 days hospital
Winter 2015 Flare, 5 days hospital March, meds adjusted
(unDx flare 2009 caused by Zyrtec; suspect mild disease in 1990, age 6, followed by remission)

depression 2000, migraines 2012, glaucoma 2014

Humira (40mg/week)
Asacol (800mg 3x/day)
Prednisone when flaring
assorted supplements

Topamax (migraine)
Sumatriptan/Sumaval (as needed, migraine)
Latanaprost (glaucoma)
Viibryd (depression)
10-30-2014, 08:25 PM   #156
ronroush7
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Yep I do I have really bad back pain sometimes not sure what it is.
Not sure but it could be your colon.

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10-31-2014, 10:51 PM   #157
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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.
11-02-2014, 06:10 PM   #158
ronroush7
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My lower back does some twitching or spasms. Does anyone else have that happen?

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11-17-2014, 04:28 PM   #159
ronroush7
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Getting ready to go to Johns Hopkins once I have an appointment.

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11-17-2014, 05:38 PM   #160
Ali29
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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.
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
12-17-2014, 09:51 PM   #161
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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!

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
03-14-2015, 12:25 AM   #162
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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?
03-22-2015, 10:49 AM   #163
Elektrikhd
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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.
03-22-2015, 10:12 PM   #164
grahamburgers
 
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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.
03-30-2015, 07:49 PM   #165
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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.

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04-17-2015, 01:35 PM   #166
 
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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?
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.
04-18-2015, 10:54 PM   #167
Jackie Aba
 
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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.
04-21-2015, 08:59 PM   #168
Pilgrim
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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!
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
04-22-2015, 05:39 AM   #169
nitty
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Hi [email protected],

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.
05-07-2015, 12:41 PM   #170
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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.
08-14-2015, 11:52 AM   #171
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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?
08-14-2015, 12:14 PM   #172
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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
08-14-2015, 01:13 PM   #173
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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
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!
08-14-2015, 01:51 PM   #174
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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 .
08-21-2015, 12:55 PM   #175
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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?
08-22-2015, 08:17 AM   #176
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I have low back pain but not THAT low.Just below my waist line.
08-22-2015, 09:11 AM   #177
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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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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-22-2015, 09:29 AM   #178
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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?
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!
08-22-2015, 12:09 PM   #179
Charlotte.
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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?
08-22-2015, 02:47 PM   #180
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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.
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