30 years of chronic constipation...AND NOW CROHN's!!!!???!!!

Hello! I have had trouble with SEVERE constipation for the last 30 years, most of my life. Recently my GI told me I also have developed Crohn's. I do not have diarrhea at this point...still the very bad constipation. But I have a lot of pain, and was told I will need to have a section of my small intestine taken out because of the scar tissue.

So far, my GI seems much more focused on the Crohn's aspect of things. But I am having trouble seeing how I will manage the constipation (sometimes 1-2 weeks in between bm's) when all the Crohn's info I'm reading is for those who have diarrhea. Does anyone have any suggestions, reading material, sites, etc for me? On how to manage both of these things at the same time?

Any suggestions are welcome/helpful. Remember, this is all new to me so if you reply with lingo unknown to most (like using acronyms you assume I know) - it may just confuse me.

I appreciate any kind soul with advice!!!!!

Hi, and welcome to HW. I can relate as I spent most of my life with Irritable bowel syndrome and chronic constipation, and didn't get diagnosed with Crohn's until middle age. My Crohn's is located in my ileum, which is the last part of the small intestine before connecting to the colon. When my Crohn's is active, then I get anemic, from bleeding ulcers and high inflammation markers on blood tests and lots of fatigue. If I get significantly constipated, then it really hurts in my ileum area (right lower quadrant, right around where my ovary is) I take fiber pills, probiotics and colace (stool softener) every day, and add Miralax and sometimes Senokot if my constipation is a problem. I also try to keep up on drinking lots of water and attempt to exercise with cardio as much a possible. If you are considering surgery, get a second opinion and get a good colorectal surgeon who is very familiar with Crohn's. You can read a lot of good info on the Crohn's website at www.ccfa.org. Also, you may want to consider experimenting with your diet to see what works for you. Many people find going gluten or dairy free helps, and others are on the Specific Carbohydrate diet. Keeping ajournal of your food and what seems to make things better or worse is a good place to start. ask any questions you want here and we'll try to help!

Oh I knew I forgot to mention exercise! Lol

Also I've been adding soups and smoothies in to help keep my fibre n veg intake on the up whilst not putting m strain on the bowel, my problem is it often "goes to sleep" so that's why it backs up so give it easily digestible foods and half the work is done! Try and keep away from common monsters such as popcorn! Lol

Hi and welcome!  I was mostly constipation in my younger years.  I ended up with an emergent resection in 1990, then many years later my gallbladder out.  SInce then I am mostly D.  Having C or D really depends on each person and what surgeries they have had and what diet they can eat.  I am now in a flare...and the Constipation has returned occassionally (unknown if it is inflammation, a change after 22 years or what for sure yet).

I agree with the poiint of making sure you get enough liquids...that has been a major issue for my sister who has constipation more too (she has UC ulcerative colitis but it may be Crohns).  Dehydration is a major issue for me to and can flip me from D to C. 

Hoping you can talk well with your GI and get something to relieve the constant constipation

I had rectal bleeding and constipation all my life and begged doctors for a rectal exam but all denied me and said not until I am in my 30's. I loved popcorn and pumkin seeds with shells. Long story short I found myself vomiting, and my rectum closed up from scar tissue. The popcorn and seeds were scraping my rectum all those years and I was told to use preparation H since all the doctors thought I had a hemeroid. Spelling?? I dropped 30lbs in a month and finally was sent to the hospital for an Upper and Lower scope. Told I had Crohn's Disease. I was only going to the bathroom about every two weeks or more. I called my stool "Dinosaur Eggs" It was like giving birth. It would take me up to three hours to pass the stool. So I had surgury on my colon where the doctor put a slit and I think cleaned up the scar tissue. I now have 5 inches of nerve damage of the rectum. I am currently taking Pentasa 500MG 4 cap. AM and PM and Colace 100mg 3 cap. PM. I do not eat meat (rearly) and I never know what to eat because I have upper and lower crohn's. So if I eat I either vomit it up or get so constipated it hurts. I have learned to drink protein shakes and my treat of the day is Fiber cereal (of which my doctor does not approve or know) but I find the fiber cereal allows me to move my bowels. The everyday life of figuring out what to eat is my biggest stressor of all. I find if I eat meat or food I end up more constipated. I no longer pass dinosaur eggs, but do go to the bathroom at least every 3-4 days. I tried Humara, Methotrexate, and Remicade. None of them helped. I did like the Methotrexate but can no longer take it because the steroid Prednisone of which I took for 5 years threw me into early menopause at the age of 35 yrs old. I am now on Hormone replacement therapy. If I take the methotrexate I severely sweat and water pours down my head and all over my body. So no more Chemo and no more Prednisone for me. I told my doctor I will only take Entocort EC (steroid) 3MG three x's daily for the inflammation of my intestines. I also ended up with my intestines stretched out in areas due to the passing of the Dinosaur eggs. Thank goodness I don't pass them anymore. I believe cutting back on the food has help and I believe I would not be able to survive without the Pentasa daily. I do have Miralax but prefer not to take it, because I get nausea and it makes my stool like pudding and then I go for three days straight. Too tired to be doing that. I rather be constipated. I wish all of you luck and hopefully we will have better days.

I am now 52 yrs old, I was diagnosed in 2001 and it has been a long haul. Luckily I have been able to stay out of the hospital the past three years since I no longer eat, and I now know how to survive. If I do get an attack I have enema's to use. They are Messalamine Rectal Suspension 4 grams/60ml. I us this when I have a bad attack and have pain. This takes the pain immediately away for me. Problem is you have to lay down with your butt above your head level which equals about 5 or more pillows. Then rotate every 15 min. per side, back, side, stomach total of 45 min. But once done I am good for a few hours. I also have learned to use the hot water bottle with attachment to flush myself out if I am backed up. Since learning all this I no longer have to go to the hospital for help. So that is a good thing. I do miss eating food, I no longer even want or desire to eat food even though I do get hungry all the time. My next stop is a nutritionist because I feel like I have an eating disorder now. Funny thing is I don't get skinny. No metabolism I guess from not eating. Take care.

Did you consider urine therapy?

I could have written your post myself! Almost everything I read about Chrohn's is regarding the runs. That doesn't happen much for me, but the pain of the constipation is ferocious. I can't have a movement without a suppository (or three). I wish I could get this under control.