Crohns with Constipation - questions

[Sparkle2012]

I have supposedly had "IBS" for 25+ years. Recently diagnosed with Crohns so....is that what that actually was for 25 years? I am a chubby person who has had trouble losing weight and with constipation and occasional blockages. Does anyone have these symptoms? I recently decided to start eating only nutritious foods and have lost 20 lbs without dieting. This is not due to Crohns - but an attempt to gain back the energy that has been so depleted due to my "absorption issues" which I now know to be Crohns thanks to the camera pill. I have strictures throughout small bowel and something showed up on two...two....two.... xrays at the terminal illeum. The camera pill they snatched off me at 4:30pm just before closing time "did not get that far" per my current doctor so.....gee ever wonder what could that be there doc?

My main question - Is there a good way to approach the food issue identifying the culprits that cause the cramps? I don't even know where to begin. Appt upcoming with Mayo Clinic 6/18 after my current doctor gave me my Dx and remarked at my streaming tears that "we all have to die of something." I decided I didn't want this idiot helping me get there. :hallo3:

Some days no pain - some days I'm in bed all day. It comes from out of the blue and seems to have taken a bad turn since my diagnosis? Supplements maybe? I'm only on vitamins, Align probiotics, Myrolax.

My next question: can we ever have alcohol at any point? I so miss my Saturday night italian dinners with a good wine. Is that something I must forever say goodbye to? I stopped all alcohol when I read it irritated Crohns -- before my Dx --- because I suspected it might be Crohns.

My 3rd question: is anyone doing the combining foods diet and having luck with it. That seems to be a happier alternative to the SCD if it works.

Thanks all.
Any advice would be helpful.:sign0085:

I'm greatful for this forum. My current doctor has been disappointing.

 

[angiemitch]

Hi clsparks;
Welcome. I'm new here too, but it seems to be such a friendly and welcoming community, I'm so glad I joined.

I cannot believe your doctor said that ... that's just awful, and I do hope you seek a new one. You should have nothing but support from your doctors. I left a doctor for far less reasons (I just felt like he wasn't furthering my treatment ... maybe my fault, who knows). I'm much happier with the doctor I have now.

My symptoms have been similar to yours. I also have strictures and narrowing, and a lot of cramping and pain. My last two scopes could not go into the small bowel because of scar tissue, and now I'm scheduled for a bowel re-section so they can take out the strictures and any area affected by disease (seems to all be limited to the Terminal Illeum area).

The biggest thing I've learned over the past year or so with my diet is that I need to avoid foods that could cause obstructions (I've had many obstructions over the past year, including one this past weekend). It's not so much "eating healthy" as it is eating what can be easily digested without getting "stuck". From what I've been told, a low-residue, low-fibre diet is best when dealing with the obstructions and strictures. You're more likely to obstruct when eating high-fibre foods than foods that are not. I have obstructed after eating steak (any meat really, other than turkey, fish, or chicken), pizza (especially Pizza Hut pizza, which I love!), any cheesy foods, and high-fibre stuff. I also find that if I eat fresh fruit or veggies, or high-fibre stuff that I get a TON of trapped gas, and that hurts like a bitch. Having gas is one thing, but to get gas and not be able to get it to MOVE, ouch. So I've been existing on mainly white bread products, low-fibre cereals, soups, and "white" meats. I rarely eat fruit or veggies at all anymore, unless it's cooked in something I'm already making. If I do stray and eat other meats, I always have to remind myself to take small bites and chew thoroughly. It sometimes helps, and other times I've ended up obstructed and puking my guts out. I still don't have it down to a science. I also try not to eat a lot at once. I have also found that the times I obstructed, I ate a big meal and really filled myself up. Not good. I try to eat smaller portions, more often. It does seem to help.

That said, I'm off all meds right now waiting for surgery, and I'm still in pain and having some sleepless nights. I really never believed I had crohn's because I didn't have the classic symptoms like diahrrea, but now that I know more, and I know about the strictures, it all makes a lot more sense. I have to be careful what I eat, and the "constipation" I thought I had was not really constipation, but obstructions due to the scar tissue and strictures caused by the disease. You're not alone.

I can't really answer your question about drinking wine. I don't really drink much, but I still have an occasional half-glass of wine with dinner, and I've never really had a problem from it especially if I have it with food.

Keep us posted on how you're doing.
Angie

 

[David]

Greetings and a most hearty welcome to you

I have supposedly had "IBS" for 25+ years. Recently diagnosed with Crohns so....is that what that actually was for 25 years?

That would be my guess. We hear this kind of story WAY TOO OFTEN. It really pisses me off.

I am a chubby person who has had trouble losing weight and with constipation and occasional blockages. Does anyone have these symptoms?

Weight problems and constipation and blockages are unfortunately not uncommon here.

My main question - Is there a good way to approach the food issue identifying the culprits that cause the cramps? I don't even know where to begin.

Herein lies a potential problem. Those cramps may very well be due to your stricturing. While a food diary can certainly help identify problem foods, some foods may not so much be a sensitivity but simply lead to problems getting past the stricture. My suggestion would be to request diagnostic testing such as an MRE to figure out if the strictures are due to fibrosis (scarring) or inflammation. If they're due to scarring and narrow enough, surgery might be the best treatment option available. All the medicine in the world won't solve the scarring

Appt upcoming with Mayo Clinic 6/18 after my current doctor gave me my Dx and remarked at my streaming tears that "we all have to die of something." I decided I didn't want this idiot helping me get there. :hallo3:

:facepalm:

Good call.

My next question: can we ever have alcohol at any point? I so miss my Saturday night italian dinners with a good wine. Is that something I must forever say goodbye to? I stopped all alcohol when I read it irritated Crohns -- before my Dx --- because I suspected it might be Crohns.

Once you're stable then you might try it at small amounts if your doctor is comfortable with it. But I wouldn't touch it in a flare.

My 3rd question: is anyone doing the combining foods diet and having luck with it. That seems to be a happier alternative to the SCD if it works.

We discussed food combining a little, but I'm not familiar with anyone doing much with it. But it wouldn't hurt to ask in our diet/fitness/supplements forum

Have you had your vitamin B12, vitamin D, and folate levels tested? People with Crohn's Disease are commonly deficient in those.

We're here for you anytime

 

[kllyeve]

Things I found helped because I had some stricturing and repetitive partial bowel obstructions- I was also chubby, unable to lose weight(when you are nutrient deficient your body does not want to let go of the weight) and suffered from constipation for 20 years.

1) Do not eat a large meal, eat several small meals so that you do not have a large bolus trying to move through too narrow a tube.

2)I did the food combining and it helped for a bit, but not long

3)I got so I was afraid to eat, so I started drinking Boost or Ensure. It helped me not starve as well since it is a liquid and chock full of vitamins, iron etc - it addressed both the possible obstruction issue and the vitamin deficiencies.

4) Constipation - STOOL SOFTENERS are your friend, I took these every day. Drink more water. I took a chinese herbal supplement based on licorice that was gentler for me than anything over the counter laxative(some people find magnesium based ones really helpful), Mineral Oil works, but I got a little crampy from it. Enemas when I really was bunged up.

5) I have both Crohn's and IBS - Remicade has put the Crohn's in remission, so now the IBS has room to play!! I am finding the FODMAP diet very helpful in reducing the amount of gas and other issues. My GI recommends it for all her IBS patients. If you google it, you will find lots of info. The biggest help I found was to remove onions and garlic from my diet.

6) I have completely given up alcohol as I am on both Remicade and Methotrexate. I am currently overwieght, so combine the strain of pretty powerful medications with an overtaxed possibly fatty liver - I decided that I have to do what I can to protect my liver and help it retain its best function. If I can get 100 pds off, then I think an occaisional glass of wine might find its way back into my diet.

If you have any other questions, feel free to contact me directly, cause it sounds like you a traveling a very similar road as I did.

This place is a GODSEND, I felt so alone and unsupported and just knowing I can come ask a question pretty much any time of the day or night, makes dealing with this so much easier.

 

[Sparkle2012]

Thank you so much for responding. I think since our systems are somewhat similar - we may be candidates to stay in touch and help with remedies, no? I have found when having cramps that a hot shower helps. I don't know why. It just does and I've read many people who use hot water bottles or heating pads (not too hot to burn the skin! careful) --- I had a raw peeled apple yesterday that hurt me all afternoon so I tried 2 things: Steve and Jordan's relaxation techniques really helped, resting for 30 min with heating pad and it passed. Due to all my issues, I had hemorhoidectomy a few years back and was told if I had pain, get into a warm shower and it cuts the pain immediately. It did - everytime. Maybe heat and bowel are friends? I was watching The Doctors this morning about how cold really helps inflammation and now am wondering about an ice pack on the old belly. I may test that.

Last weekend, under great stress, I drank 2 glasses of wine and really paid for it later. It was not with food however and I won't try that again. That was the first alcohol I have had in 4 months so....now I'm scared straight again. I do miss my Saturday night Italian w/wine but the pain is just not worth it. I do 30 minutes of cardio each day which is supposed to help the digestion. I've been eating fiber foods for a while now and never had trouble until recently. My issues until lately seem to be primarily the strictures --- those big comfort meals which I love ---I have had to pare down and that has helped tremendously. My belly make hideous sounds throughout the day which is new. I treat the constipation closely with daily Myralax...because it is constipation with me. Probably due to the strictures holding food for so long - the bowel pulls all the liquid. That's my uneducated theory. Or because I'm older - they say old people have those issues although I don't feel or look 61.

My doctor was indeed disappointing. Aside from the remarks - including one remark alluding to my chubbiness and implying an inabililty to stick to the "no food" gruel diet ---oh yes he did-dit! ----cleverly disguised the insult with " I don't think you are a candidate for that treatment judging from your current body habitus" and then a meaningful glance at my body (which is merely a size 16W -- i am hardly a beached whale.

He also forgot the 2 tests that actually brought me to the camera pill. When I asked what he saw in the terminal illeum he looked questioningly "did I forget a test?".....not to mention he prescribed me the same test twice and was never prepared during any of my visits and had to be called back into the room by the nurse and I once to discuss a test result that he forgot. I'm hoping Mayo will have the latest and greatest. I did not live with this thing day to day until I saw him and started with the supplements. Now I feel I have to tiptoe around my touchy small bowel. The only good news is that my "body habitus" is getting better because I'm scared to eat big meals and am working hard to eat nutritiousness because tests indicate my nutritional status was pretty bad. The vitamins hurt my strictures - I'm looking for liquid vitamins/minerals now. I can tolerate the jelly ones pretty well though but they are short in the mineral dept.

I don't know how bad the strictures are because Dr Doolittle didn't discuss them. And who knows how bad that one in the terminal illeum is - it is the only one that showed up on the CT et al ----and that is a very common area to have issues. I hope you do well on your surgeries and have a speedy recovery. I understand you can have some peace in the form of remission for several months after that is done. I'm hoping that is the case for you.

Keep in touch as you move thru the treatment etc. I would appreciate hearing from you, ok?

 

[Sparkle2012]

PS: I've read about a certain surgical technique that does not shorten the bowel. If your doctors are not using that and haven't discussed that with you, it might be beneficial for you to look into it.

 

[David]

You may be thinking of a strictureplasty.

 

[Sparkle2012]

This reply was very helpful. I'm still trying to figure out how to maneuver through the text strings so feel free to contact me directy to further discuss - I'm not sure how!! In fact, I'm not sure I'm replying right to your post!!! Love to hear from you and thanks again for your thoughtful advice.

Carol

Things I found helped because I had some stricturing and repetitive partial bowel obstructions- I was also chubby, unable to lose weight(when you are nutrient deficient your body does not want to let go of the weight) and suffered from constipation for 20 years.

1) Do not eat a large meal, eat several small meals so that you do not have a large bolus trying to move through too narrow a tube.

2)I did the food combining and it helped for a bit, but not long

3)I got so I was afraid to eat, so I started drinking Boost or Ensure. It helped me not starve as well since it is a liquid and chock full of vitamins, iron etc - it addressed both the possible obstruction issue and the vitamin deficiencies.

4) Constipation - STOOL SOFTENERS are your friend, I took these every day. Drink more water. I took a chinese herbal supplement based on licorice that was gentler for me than anything over the counter laxative(some people find magnesium based ones really helpful), Mineral Oil works, but I got a little crampy from it. Enemas when I really was bunged up.

5) I have both Crohn's and IBS - Remicade has put the Crohn's in remission, so now the IBS has room to play!! I am finding the FODMAP diet very helpful in reducing the amount of gas and other issues. My GI recommends it for all her IBS patients. If you google it, you will find lots of info. The biggest help I found was to remove onions and garlic from my diet.

6) I have completely given up alcohol as I am on both Remicade and Methotrexate. I am currently overwieght, so combine the strain of pretty powerful medications with an overtaxed possibly fatty liver - I decided that I have to do what I can to protect my liver and help it retain its best function. If I can get 100 pds off, then I think an occaisional glass of wine might find its way back into my diet.

If you have any other questions, feel free to contact me directly, cause it sounds like you a traveling a very similar road as I did.

This place is a GODSEND, I felt so alone and unsupported and just knowing I can come ask a question pretty much any time of the day or night, makes dealing with this so much easier.

 

[Aura]

Hi and welcome

I am a constipated crohnnie too. I agree with being familar with the FODMAP foods and yes I have lactulose every day 1-2 shot glasses with coffee to soften stools. My crohns is active in my small bowel with many ulcers and fissuring ones, we are trying to get it in remission with Prednisone, Humira and Aza.

Your doctor sounds incompetent to be treating patients with IDB and IBS I would change and also tell him or make a complaint about him.

I am chubby too - I weigh 92kg at the moment and I have come down from 104kg - but I also have diabetes II and Polycystic Ovary Syndrome - so losing weight in more difficult due to the combo of conditions - even when my crohns is flaring.

The most important thing is to keep food passing through so that it does not back up and you get a compacted bowel. Therefore stool softeners may be a better maintenence programme in conjunction with the odd microlax to release the bowels. When you get the muscle urge to go, sit on the loo - it's really important for constipated crohnnies to keep responding to these urges to lessen the dependance on enemas that can cause other problems in the long term.

Get to know the FODMAP foods and try them with a low residue diet and see what happens. A bath works well for my cramping pain, as well as using pain meds - buscopan; panadol and when needed tramadol.

Hot packs work well too. I still cant get over what a tosspot your doctor is - I hope you find a better person to manage your care

 

[Sparkle2012]

Hi Aura! Love your terminology especially the Tosspot! haha Yes I have an appt with a good Mayo Clinic doc the middle of this month. I find that warm/hot showers help me cramping too. That heat theme seems to resonate throughout this forum. I have learned some tricks for dealing with the impactions - mostly drinking water and lots of it regularly -- I find now that it was mostly just struck in strictures and I'm learning to eat smaller meals with not too much fiber to deal with that. I've also read that you can't stay on soft foods too long because it's not healthy - don't know if that is true - but for now my colon is OK and I know fiber helps the colon stay healthy. I guess my Mayo doc will clarify all that. Sorry to hear about your fissures. Im wondering - if you are not having pain --- does that mean your ulcers are not festering and forming fissures? Another question I guess for Mighty Mayo doc. I will defintely look into that diet. I've never heard of it until now. I do have some Tramadol which I thought was like a hard Tylenol --- but turns out it's an opiate so I will handle that with care. I don't want to relay on any pain killers.

My big question to you - how are you doing on Humira? Have you taken it long?

 

[Aura]

Pain is interesting - I have it most days - at the moment it is real bad - I have just woken up from a rest and its bad. I manage the pain with meds some ulers are fissuring the others look like deformed wriggley toes on the photos, others look like red patches and the GI said that instead of having a double lining the ucler has worn it to a single lining. - I don't get it - but I do get the pain it all causes - bless it.

I have been on Humira for 8 weeks on Monday. That's when I take me next ***. From that I need to meet with my GI and get some more scripts - I think i am seeing some slow improvment - its not overnight. I'm ok on the Humira and Aza - I do need to rest at times and pace myself.

 

[Sparkle2012]

I'm so sorry you have such pain. Let's hope the Humira will help you soon. I HAVE heard good things about it from people in our Florida chapter of the Crohns group I've been speaking to. That was recommended for me as well by my Dr. Doolittle....we will see if he Mayo doc agrees when I see him and then I will feel much better about it. I have educated myself on this forum and should be fully prepared to understand the options when I see him. I would have liked to view the camera pill video. I might just ask Dr. D to give me that video. I understand our medical records are just that - our medical records. Best wishes to you, dear. There are some great meditations on the utube.....I use them and they seem to help when I have pain. That - showers - rest - and a heating pad. My specific issue is my husband is TOTALLY healthy younger male who likes to do things and I feel like an anchor to him at times. ;(

 

[Aura]

I will check out some of the meditations on youtube. My good friend got some made specifically for me many years ago - I have them on my mp3 player and I listen to them all the time.

With my husband I am lucky as I am a golfing widow - he enjoys a game of golf and it gets him active and out for a day. If its not that he plays cricket again out active for the day. I used to watch him play cricket - but I am not his caddy for golf :ylol2: I stay at home and rest and potter around. What I find hard is that he is always keen to plan overseas trips and it looks like our one for next year will be UK and Cypress with some of Europe. This I find hard as my body so hates the long haul flights - it takes me ages to recover and also all my carry on baggage is my medicines - that's all I can fit and it makes me look like I am selling them to customs people. For the last few years I get an infection on the flights that tends to plonk me in the hospital when I get to the UK. Last time on the way home I wore a mask and changed it every three hours - that time I got home without and infection. Also I dont like travelling with the likes of Humira - last time I went to UK and Thailand I had methotrexate - it just creates more stress.

Does your husband have any sports that he plays? Any hobbies that get him out and about?

 

[Sparkle2012]

He likes to ride his Harley..with me!! and he likes to go out of town. OUr one common ground is we both like to eat out. He is a workaholic, long hours during the week and works all weekend in the yard and around the house - so his vacations are important to him - very planned out to the letter...and he doesn't adjust well to changing plans...so this is not going to be easy for either of us. He's also younger than I, which doesn't help. Thank GOD he is getting older and ready for bed at a normal hour. I'm nearly 62 and like to be home and in the bed by 10pm. Those party days are long gone.....especially with this CD. I'm going to brush aside the guilty and he will just have to understand if plans have to change now and again. I'm blessed with pretty good health, even with Crohns - I don't have the bleeding and daily issues (yet) and I thank God that it is not that bad for me (yet). I've lost 20 lbs from eating healthy and Ive taken B12 shots weekly for several months due to an oversight from my family doctor so I have good energy right now. Before all the vitamins, Align, Myralax, I felt like a person with one foot in the grave. My description was "I feel like I have no blood" and that turns out was somewhat true. I'm going to suggest my husband golf...so I can putter around the house. I'm not working now so pretty much that is what I do Mon-Fri during the day. I'm going to retire in October when I turn 62 and can get my Social Security. President O'Bama over here is wanting to make changes here and there and I'm going to draw it before they raise the age or lower the rate of the benefit. Scary times in our economy eh?

 

[Sparkle2012]

I will send you a few links if I can find them again on meditations that I have used. I was so down and depressed and scared a few months ago and I ran onto some chakra cleaning and other meditations and suddenly I had such a lift and was actually happy. I don't know what transpired there. But sometimes mind over matter eh? It lasted until my next doctor encounter! ha I'm from southern california so we are up for anything along those lines. Very open to new experiences and metaphysical type stuff. You know the cereal bowl? Fruits, flakes and nuts they say! ha