Feel the need to post my story

[Atlantic]

Hello. Finally decided to become active on this site. Recently have felt a strong need to state my situation. This Crohns thing is such a mental drain almost as much as physical. I have hopes of getting feedback from anyone that has had a similar situation and maybe get some helpful hints for managing. Glad to help anyone I can in reverse. I will start by saying my situation is a mere speck in comparison to what many of you are going through. My prayers go out to you all. I feel somewhat guilty and embarrassed complaining about my situation but it is weighing heavy on me regardless of the level of severity. I have rehearsed the history of my situation in my head about everyday recently so this site is a relief to join and share even though I am an extremely private person. Here I go. I am a 53 year old male. Married with college age kids. I have a professional career that is very fast paced and can be very stressful. I have always been physically fit and in good health other than being diagnosed with Crohns. I can recall always having severe "stomach cramp" episodes since childhood. Maybe once every few years but severe enough for me to remember. Never told by any doctor but I feel these were start of Crohns related symptoms. Went through childhood, college and getting married and starting a family. Always shook off these yearly 12 hour "stomach pains" as something I ate and just man up and work through it. Stress started taking a toll on me as I climbed the career ladder. I had also at this time starting reducing my life long enjoyment of participating in sports and working out. My weight climbed to about 225 (6 ft height). The "stomach" episodes and severity started to increase in numbers thru the 90s. Hours of floor rolling pain and nausea would occur every other month. Finally in the summer of 99 it was so bad one night I had wife take me to the emergency room. This is a big deal because I never been to the hospital my whole life and disliked going to doctors. It was serious for me. After a battery of test (one down the throat and another that I drank substance to show thru my GI tract) and seeking advice of gastro Dr, it was stated I had a mild case of a Crohns related disease. Thought strange it they stated it was "thought to be" Crohns. I also never heard of Crohns before and was shocked at learning about this disease. Got depressed that I was labeled with a disease. Was told to manage stress, eat better and get back physically active. Told this would help some. Was put on the medication Asacol at this time. Asacol seemed to reduce some of my symptoms. Got back into physical shape, tried to eat better and got more rest. Dropped weight to an active lifestyle 210-205 range. The food issue has been a trial and error for years. After about a year, my Gastro changed my medication to Pentasa of which I am still on today. The episodes did not go away over these last 17 years. For about the first 15 years episodes would come about 3 times a year. Always seemed to come after a stressful time, when I was not resting much and after eating something that I always seemed to relate not good for me. Fried food, popcorn, skin fruit and vegs, high fat items, large portions, all I found really had an effect. The typical scenario was I would start to get loud stomach noises in early afternoon. Would start to get very tired. By the time evening rolled around I would try to rest but the cramps would start to pick up like ocean waves coming. They would increase in intensity starting late in the evening. On a scale of 0-5 with O being normal and 5 a pain that makes you want to go to the hospital, it would peak at a 4 for about 5 solid hours. Intense Pain every minute or so. Nausea and vomiting would occur during this category 4 pain stretch. Always seemed to get relief after vomiting several times. Could not do any bowel movements during these episodes. Generally about 5 to 6am that morning I would be worn out and exhausted fighting the battle. The cramping would subside and I would go into a needed rest for that whole day following the previous night's episode. Would have no appetite or desire to drink anything for about 24-48 hours. Very strange not wanting to drink or eat that long but I feared consuming anything. After 48 hours I generally would have a case of severe diarrhea. This was welcomed because it felt like my intestines were being cleansed of the "evil". Would also start trying to rehydrate and eating very mild foods. After about 4 days I would be back to normal. Again this was the pattern for 15 years. Got to where the episodes maybe decreased to 1-2 a year and I made the decision to self decrease my Pentasa out of fear that the meds might cause a side issue from just taking the med. That was not wise I know. The episodes increased in frequency to about one a month. Dr increased Pentasa about a year ago. Things appeared to improve somewhat. At this time I also started being very conscious of what I was eating and went into a reduced food intake situation in hopes that this would help my Crohns. Over about a year I dropped from an average of 210 pounds to 185. Feel this is too much of a loss. Know weight loss is tied to Crohns but the direct reason I reduced weight was because I don't eat very much. Afraid I am fearing food though I love to eat especially the bad things. Deserts, pastas, rich sauces, cheeses, meats, etc. Recently I have experienced what I think is a major change. It is some good in it but also bad. Intensity has decreased but frequency has increased. I have not had a category 4 episode in about 6 months which is great but I am experiencing pain level 1-2 cramps about every other day. I have very loud sounds coming from my stomach/intestines daily. So much so I get embarrassed in functions where others are around. Everyone looks at me strangely and I have to come up with some excuse that I ate something wrong or I am hungry which is not true. I will get a hardening feeling in my lower right area of navel. I can push on this area and it feels like squeezing a tube of toothpaste. I am sure this is blocking in my intestine and I am able to massage along. Feel bloated many days. Have 3 or so bowels movements throughout many days. Varies in loose to firmer with no real pattern. Sometimes I feel the need to make sure a bathroom is close by which I fear may limit my life one day. All this is Very disturbing to me. I am able to basically function my day but I do not feel well and I am very irritable. I get stressed and anger quickly. Worrying a lot about my future with Crohns. I am tired all the time and I have lost energy. When at home all I want to do is rest on couch or go to bed. I don't eat much in fear of causing serve cramps. I have an appetite but just do not want to eat. This is not me. I fear I am not preforming my job as I should. I worry about income and the financial stability of my family. I work in a commission industry of up and coming younger people. Vitality and vigor tend to be the successful traits. I know the mid life crisis issue tends to hit guys at my age regardless. The thought of Crohns knocking me down has added to the natural aging worries. My Dad recently passed away suddenly. Now I am thrust into the role of the eldest male in the family. I am having to watch over my Moms affairs along with my own families while dealing with this Crohns issue. I have scheduled an appointment with my Gastro Dr to follow on these new conditions. Would love to hear if anyone has gone through what I have. I am always looking for supplements, food suggestions, techniques that will help my Crohns. The mental aspect has been a huge challenge for me. Any suggestions you all have will be greatly appreciated. Sorry for rambling for so long. Again, I know my story is nothing in comparison to many of you. I will continue to pray for your relief and for breakthroughs that can help us all. Thanks for listening!

 

[ronroush7]

Welcome. I am sorry for all you are going through. When you mentioned about being afraid of eating, have you tried any nutrition shakes? I don't know about Boost but I have heard Ensure has carrageenan which is supposed to be bad for you. My wife and I used to drink shakes by a company called CalNaturale but I haven't been able to find it lately. I hope you feel better soon.

 

[Atlantic]

Thanks for responding. Yes I have been drinking the ensure protein type drinks for about a month. Very much like them. Taste like a milkshake. Usually drink one for breakfast thinking about adding one at night. Wife thinks I need to eat 5 to 6 times a day in smaller amounts. Had a history of only eating a large lunch and a large dinner each day. Recent few years still only eat twice a day but in low amounts thus the weight loss. Going to try the higher frequency eating to see what that does despite the fear of filling my belly leading to cramps. Also think I need to drink more water thru day. I can workout and go to work thru the day and not have a single drink of anything other than one glass of water for lunch.

 

[ronroush7]

I had surgery seven years ago and my doctor recommended eating smaller meals more frequently.

 

[cmack]

Atlantic,

I really feel for you bud! Yes it was a long post, but I read every word you wrote. Things are different for all of us, as we are all different. I'm 6'1'' and I weigh 185. I think your BMI is fine. You are probably better off at the weight you are at.

I know about the fear of eating and its effect on your body, I struggled for years with no clear advice. I know what those stomach aches feel like too, it doubles you over and you just want to cry like a baby. I am only 38, so I do not have the experience in life that you have. I have been permanently disabled due to surgical procedures caused by this disease since the age of 29 though. I feel for you, It is hard to be a man and not know if you can provide. I had to eat my self esteem in that regard a long time ago. However, you are not out of luck. You need to stay away from GMO foods like the Black Plague. Full of pesticides/herbicides (glyphosate) deemed safe by our collective Governments.

Welcome! I think you are a very educated man. I would like to invite you to check out nutritionfacts.org It was recommended by my doctor who is also a veteran of the middle east wars and has a wife with I.B.D. It has helped me make smart informed decisions regarding my health and living with Crohn's type illness (never was given a diagnosis) suspected Crohn's though.

I wish you all the best. I think you have come to the right place. I consider you a friend. Reach out to me as much as you need, I'm here for you bro! pm me directly or just talk to us on this thread. I want to help as much as I can.:thumleft:

cmack

 

[Atlantic]

Appreciate your support cmack. I feel for all you are going thru. Prayers are with you and ronroush. I did check that nutrition facts site you recommended. Really look forward to digging into what is there. Interestingly I just ran across something the other day about the spice Turmeric. I see on the front page of this site it has Turmeric listed as a prime article. Does anyone have any background on using this spice? I am always looking for that magic relief supplement. Wow, would be nice if this was it. I take B complex cap , fish oil cap, and a probiotic cap. and something called life essentials. Any other recommend sups that might help?

 

[ronroush7]

I have heard tumeric can help with Crohns Disease. I will keep you in prayer, Atlantic.

 

[cmack]

Atlantic,

Glad you are doing some searching that site. Dr. Greger is very funny yet smart. You will find all kinds of helpful tips and the science behind them there. Haven't tried turmeric yet but I'll keep you posted if/when I do.

Again, welcome and all the best,

cmack

 

[eleanor_rigby]

Hi, it sounds like you are having bowel obstructions. Is your disease located at the end of your small bowel? If your disease is properly under control and you don't have any scar tissue these cramping episodes shouldn't be happening. Have you had any recent testing done such as small bowel MRI or colonoscopy? It may be that you need stronger medication to get you into remission. When in remission it is easy to forget that you have Crohn's because you should not have symptoms.

 

[cmack]

Appreciate your support cmack. I feel for all you are going thru. Prayers are with you and ronroush. I did check that nutrition facts site you recommended. Really look forward to digging into what is there. Interestingly I just ran across something the other day about the spice Turmeric. I see on the front page of this site it has Turmeric listed as a prime article. Does anyone have any background on using this spice? I am always looking for that magic relief supplement. Wow, would be nice if this was it. I take B complex cap , fish oil cap, and a probiotic cap. and something called life essentials. Any other recommend sups that might help?

Atlantic,

You might want to think of looking for a vegetarian sourced Omega 3 supplement. I personally take SISU brand vegetarian omega 3 with 200mg DHA they are soft caps. I was advised by my Doctor that animal based varieties can actually contain contaminants that could inflame our bodies even worse. For me I was put on a vegetarian diet a year ago and I have had huge improvements with energy levels and way better digestion. I'm 95% vegetarian I was told the other five percent was OK as a cheat.(we are all different though) I was told if the diet didn't work it was Biologics or steroid time, because if i didn't do something to stop the flare it could even turn into cancer. I gave it a try and yay! It worked!:thumright: Probiotics are great but they are not created equal, My GP recommended VSL#3 he says it is the golden standard. Cytomatrix makes some that have been recommended by my Chiropractor(I trust her) but I have yet to try them out. You order VSL#3 from the druggist at the pharmacy. It must be kept cold(or the beneficial cultures die and so it becomes useless) so it is important to make sure you get it somewhere reputable. Mine comes in a styrofam box with ice packs inside and is cold when i go to pick it up, then into the fridge it goes.

It is always good to check with your Doc first.

Hope this helps,

cmack

 

[cmack]

I had surgery seven years ago and my doctor recommended eating smaller meals more frequently.

This is what I was told to do too by several Doctors and nutritionists as well.
Apparently eating six times (with smaller amounts) a day is optimum from what has been explained to me.