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Crohn's Disease isn't on the ease: What treatments work?
I posted on here sometime before in December of 2020 with the news that I was diagnosed with Chrons disease that was heavily concentrated in the small intestine. Since then I have been on Remicade treatments and have seen no improvements to my condition. I have had my Prometheus levels come back saying that I have formed no resistance (antibodies) to my medication, and there is a high chance of having an infection in the gut that is making the Chrons flare stay. What is worse is that my symptoms have seemed to ravage me far more than what they had done in years previous. My symptoms used to be every other day maybe twice a week, and now they are here to stay 24/7, with a little mild irriating pain here and there that I manage and use work to help me ignore. I have been having black tarry stools on and off again for the past three years, but for the past three weeks, I have had nothing but black stools and intense stomach pain every time I use the restroom. I waited 6 hours to get into the ER by the advisory of my nurse a week ago. There it was confirmed that I was still having blood in the stool, I had recently developed a UTI, and my liver's alanine aminotransferase was at 143 and the aspartate aminotransferase was at a 98. That is around 4 and 2.5 times the normal amount of enzyme production for the liver. I also today was told that my stomach was biopsied and it had intestinal metaplasia, which was likely from the H. Pylori I had when I was 17 that was treated. I feel horrible, lightheaded, nauseous, and have fevers that will reach 100.4 every day. I eat bread only to find myself in pain for hours and then falling asleep in my room from the exhaustion. I wake up often feeling worse and I hate undergoing this cycle as I am trying to get better. I move out in 4 days, I'll have to stay for a month in a place where there is nowhere for me to break down when I feel nauseous and in stabbing horrible pain. I do try to eat so that I avoid being malnourished, but it's hard when my body is rejecting the bland foods that I am giving it. It is slowly starting to feel like my body is withering away and it's frustrating to not have control over it. I have tried prednisone and budesonide with no improvements and only facial swelling, and I have also found that Tylenol will not reduce my fevers but will only sometimes ease the stomach burning/stabbing sensations. It is embarrassing being reduced to tears at my workplace over severe stomach pain and urgent need of the restroom while my body becomes akin to fire. What is worse is when constipation occurs, as I will use everything to try and use the restroom to no avail. Miralax, stool softeners, and once even magnesium citrate were to no effect. I am exhausted. I do not want to waste any doctor's time, but this is getting worse and it's taking me away from everyday life and everything I love. Besides the continuous contact I try to have with my doctors, it is very difficult to get the time or the answers. For the past year, I've practically been relying on a low fiber low residue diet and guided meditations to help me breathe through it all. And yet as I've been experiencing, they can only do so much.
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Also was a n Humira for PsA and will probably go back on it once the biopsies are complete
Due to the AVN steroids are not an option.
Am so sad to hear of your loss
@mary0thomas my heart breaks for you .
I too have a long post on here with topic ( Chronic Digestive Disorders). I know the frustration and the agony of trying to get just ONE Dr. to give you something that will relieve symptoms ( even if only for a day here and there ). I’ve been down this rabbit hole 🕳 for 7.5 long long years . Seen over 5 Gastro Dr’s from NC to FLA , where I live now .
After 5 months I finally have a televisit appt w/ Gastro at Mayo Clinic Jacksonville on Sept 7 th . I heard they will want me up there to RE-DO many of the tests I’ve had previously ( which is a lot )!! I’m desperate now as I’m almost 60 and lost 7.5 years of my life already. Chronic is the worst . I wouldn’t wish it on my worst enemy.
I’m praying 🙏 you find the right Dr. too who really cares and wants to solve your health issues. Have you been to Mayo Clinic Jacksonville or any other one yet ?
God Bless you & me and all of us suffering w/ these issues . Rosemary
No, I’m in Boston and I do feel I have the best. I did have at least 9 tests,some not so comfortable. My stomach and small intestines working well so my surgeon says I’ll do fine as well as my pcp. They say I will not suffer constipation,highly unlikely and if so the bag would happen. I’ve tried every prescription drug and all OTC drugs too. I’m on a schedule not to go more than 6 days then start laxatives. Their are times I’m so constipated they order a colon cleanse like a colonoscopy. I’ve lost weight, was social but not know and honestly always either feel ill or have diarrhea. What a life. I’m afraid of the surgery. I’ve had many but this one really scares me. I’ve heard of maybe getting an ng tube, I can’t even think of it. I wish I could talk with someone about actual procedure.I found this site and praying I’ll get a reply. The surgeon is also seeing if I can join a support group prior. I’m honestly still on the fence. Many thanks for your input. Wish you the best. Joanne
@rozy288 even with your comments of frustration and agony, i still see a sense of hope in your posting. Thank you. I’m so happy that you’re going to Mayo-Jacksonville next month. Going thru all the tests again wont be fun but it will be worth it for you. Maybe some answers and help!! Will you please let me know what you learn?
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1 Reaction@mothermary1 as a former nurse, I can tell you that once you that once you are back on your feet after surgery, you’ll feel like a new person. Even the NG (nasogastric) tube will be your friend. It will help keep your stomach from filling with gas. Nurses will do their very best to help you understand each step in the process and to make sure you stay comfortable.
Does the hospital have any support groups you can join? Or even a former patient you could talk to? I’ll be happy to answer more questions.
Thank you Becky. I’m allergic to pain meds. I’ve has acdf 3 fusion, lower spine, my appendix,gallbladder,bunion and scoped knees. I don’t get why I’m so afraid this time. I have many drug allergies so I’m a challenge. The surgeon is really wonderful and in no way pushed this procedure. I can do as I am forever or until laxatives won’t work. I don’t eat a lot because I’m nervous. I’m 66 and I thought pretty healthy. I think adjusting to a diet after is easy because my diet now is healthy just stopped foods that cause more discomfort like nuts,seeds and beans. I’m vegetarian so I am trying to add fish for now. He will do laparoscopy if he can. That is the plan going in. It’s just I haven’t passed a formed stool in 14 months if this doesn’t work I’ll be extremely disappointed. I have been having external,internal PT and acupuncture but nothing.it just stopped last June. I’m terrified of an ng tube because of my neck surgery. I just hate them.the feel of choking is terrible. I’m not sleeping from the stress of all this mess. They are trying to get someone to reach out and my pcp is also asking patients he has. My children are all married with kids and say I need to try this. They feel their mom has disappeared and my grand kids too.I’m very isolated with this.I need to cramp this and get on the positive boat but it’s hard. I do love that you responded. I can’t thank you enough…Joanne
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1 Reaction@mothermary1 , Joanne, I know you’re frightened. You’ve been through so much and waited so long and just want to get on with your life. When you are admitted to the hospital, just tell them you’re afraid. They’ll understand. Explain about your neck and the NG tube. There is an anesthetic spray that can be used to numb your throat. Be sure that your doctor and surgeon know all of your concerns. They and the nurses will make sure that you will be ok.
Now, tell me what part of Boston are you from? I used to live in Arlington and just loved it!
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1 ReactionHi Becky, I will do that. After some research I have heard some surgeons don’t use ng tube or put it in while asleep. I’m not sure how that can happen. Im going to use Brighams portal to ask on Monday. I’m from NH but born and raised in Lowell Ma. We have lived on NH/Ma border for 10 years. It takes 50 minutes to get to Boston so we have always taken advantage of that. We are not fortunate enough to have a Mayo Clinic. Arlington a lovely area. I love Boston so much we go in frequently but live in the suburbs. I’m going to get that ng tube answered because I hate it. He is hoping to remove entire colon laparoscopically so maybe I won’t need it. I hope not. Thanks so much, Joanne
I know how you feel. I’ve been having the most miserable time in my life, but I’ve been to SO MANY GI Dr’s with no cure. Mine started in 2015, many colonoscopies & they all say “IBS, diverticulitis, long tortuous colon…been weeks w/ no BM. I just stopped eating. Liquid diet & some soft veggies. I believe, after all these years…I had a hip replacement in ‘’04. Just revised last Nov. had metal ions in my system. What is so scary, I think the damage it did is permanent (for me) I was taking Linzess, Amitiza...….you name it. because I couldn’t go to the restroom I just stopped all that and as long as I don’t eat or just have one or two bites I’m usually OK. Also meal replacement drinks