In November 2014, I was officially diagnosed with Crohn's Disease after suffering for 6 years undiagnosed. The relief of actually knowing what is going on took a tremendous load off my shoulders but now that I know, I have been trying to proceed with the next steps. My Previous G.I. had started me on Humira which only increased my already over the top anxiety and I could not continue the medication. Now I have started seeing a new doctor who hasn't gotten back to me on what we can do (It's only been 4 days since he received my medical records from my previous doctor but I don't understand the reports so I am freaking out!!). It is blatantly obvious that I need some type of surgery. I have been in so much pain and having so much anxiety because of not being able to do anything about the pain I am literally going crazy!! I don't know what to do. I'm always so tired, I can't even function properly from day to day. Does anyone have any type of advice on what I can do for the pain other than shoving percocet down my throat?! I need serious help and no one seems to want to listen to me or help. Also if anyone happens to know how long recovery time for any of the surgeries are and could tell me, it would be greatly appreciated. Thank you all so much in advance!!
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Going Insane and getting no where with my G.I. Need help on understanding my disease!
- Thread starter kellyann2790
- Start date
Welcome and sorry to hear you are struggling so.
It really depends on the type of surgery which in turn depends on the location and severity of your disease.
Some surgeries such as a ileostomy that requires a stoma and bag may take longer to recover from than say an ileocecectomy. Another thing is if the location of your disease is the small bowel then consideration is given since unlike the colon you can't live without. You can also develop other problems by having too much of it removed resulting in short bowel syndrome.
Did you have anxiety as a side effect of the humira or just the thought of humira made you have anxiety? If the latter, was it due to the fear of side effects or the shot itself or something else entirely?
If you don't think the pain is something you can manage at this time you could always put in an urgent call to the new GI or goto the emergency room of the hospital he is affiliated with.
I hope you find some relief soon
It really depends on the type of surgery which in turn depends on the location and severity of your disease.
Some surgeries such as a ileostomy that requires a stoma and bag may take longer to recover from than say an ileocecectomy. Another thing is if the location of your disease is the small bowel then consideration is given since unlike the colon you can't live without. You can also develop other problems by having too much of it removed resulting in short bowel syndrome.
Did you have anxiety as a side effect of the humira or just the thought of humira made you have anxiety? If the latter, was it due to the fear of side effects or the shot itself or something else entirely?
If you don't think the pain is something you can manage at this time you could always put in an urgent call to the new GI or goto the emergency room of the hospital he is affiliated with.
I hope you find some relief soon
I have always suffered from anxiety. It took me six hours just to do one pen of the Humira. I decided that it was doing more harm than good and begged my prior doctor to please give me another option and he wouldn't. When I had my procedures done to see what was going on, I was told that my small intestine is the size of a pin hole. Now of course since I received my medical records from him to give to the new doctor, I was reading them and it also mentioned something about colitis. I can't understand what it all means and Google isn't exactly helpful at this point so I'm at the mercy of this new doctor to actually tell me what it all means. I'm just so confused and in so much pain. I just want it to end. I read people on here have been in remission for 15-20 years and it brought me literally to tears. To think that it's possible for this pain to stop and not have to worry about certain things...it gave me hope at least. Now if only I could get to the next steps.. Thank you for your help. I really do appreciate it.
It would then be determine by how fully throughout your GI tract as whether surgery is a viable option. Especially since CD reconstitutes at the surgical site like 50% of them time. But your report seems to also say that an area of your small bowel is strictured to the size of a pin hole which makes you higher risk of obstruction. So I would keep calling the new GI and see when you can get in. Also if the pain is incredibly bad I would definitely go to the ER because stricturing can cause an obstruction and you don't want that!
Some find doing a liquid diet when they are stricturing helps ease the pain of the bowels trying to move the food through for digestion. Some drink shakes like boost and ensure.
I would definitely be pushing the new GI!
Hugs!
Some find doing a liquid diet when they are stricturing helps ease the pain of the bowels trying to move the food through for digestion. Some drink shakes like boost and ensure.
I would definitely be pushing the new GI!
Hugs!
Have you had a CT scan done and or a MRI? What were the results? Type it out I can help you understand what it all means. Ive had everything that both uc cd can throw at you. You have what sounds like a stricture, so how much cm does the results, of whatever test they saw the stricture in, say
I've had 6 CT scans in the past 2 years, I don't think I've had any mris. At this point I really just want them to do the surgery and get it over with. I know it's coming, it's inevitable. I have been in so much pain for the past week, it's a chore just to get out of bed. I just want the pain to stop. I couldn't even begin to tell you what the medical reports say, it's just way too much to type it all. My reports are about 16 pages each.
I understand trust me i do. This all started when i was 5 for me. Ive had 22 surgeries, diagnosed with both crohns and ulcerative colitis. No more large intestine and slowly watching as i lose section by section of my small. Just remember even though right now your in a bad spot, and so am i. There will be good spots. I just had a 12 year spree of good. Just try to be strong. If you ever want to know what the reports mean, if your write the "impressions" here i can translate for you. When i was 12-22 i used to go on rounds with my doctors at Jackson memorial hospital university of miami. I grew up in the system.
I would try to calm down difficult I know but try,4 days under any kind of doctor isn't,t very long and all Drs will do there utmost to avoid surgery when possible and crohns has many different treatments to try but there not a magic bullet they take time.i,m guessing you,ve been googling the treatments and reading the leaflets with your meds,try not to there worst case scenario that is pretty rare,Dr Google is a manic depressive it's never good news.i would definitely contact your Dr again and lay it on thick you have a lot pain they will help.good luck all the best
Take axels advice. I have had 3 episodes of the worst case scenerio happen. And i assure you if and when that time ever comes you will know. In all my years helping in support groups, going on rounds with my surgeons to help other kids. I only ever met 1 worse case scenerio person. It is extremely rare for the really life threatening stuff to happen.
- Location
- London, UK
Hi kellyann! Welcome to the forum!
Have you tried a liquid diet? Many people find that it reduces the pain from strictures significantly. Complete nutrition drinks like Boost and Ensure are really useful to maintain adequate nutrition. This may help you get through the time until your new doctor sees you and begins treatment.
Have you sought help for your anxiety issues? It sounds like that would be a good thing to do as your anxiety about trying medication is preventing you from making use of all the treatment options available.
Even if surgery is necessary for you, it is usually a good idea to reduce the inflammation as much as possible so that only bowel that is narrowed from scar tissue rather than inflammation is removed - important as you only have so much small bowel and you can't live without a sufficient amount of small bowel. It's also better to have healthy bowel tissue to rejoin.
If you want to read about different experiences with surgery there is a thread here as well as many posts in the surgery sub-forum that you may find helpful.
Good luck! I hope you feel better soon
Have you tried a liquid diet? Many people find that it reduces the pain from strictures significantly. Complete nutrition drinks like Boost and Ensure are really useful to maintain adequate nutrition. This may help you get through the time until your new doctor sees you and begins treatment.
Have you sought help for your anxiety issues? It sounds like that would be a good thing to do as your anxiety about trying medication is preventing you from making use of all the treatment options available.
Even if surgery is necessary for you, it is usually a good idea to reduce the inflammation as much as possible so that only bowel that is narrowed from scar tissue rather than inflammation is removed - important as you only have so much small bowel and you can't live without a sufficient amount of small bowel. It's also better to have healthy bowel tissue to rejoin.
If you want to read about different experiences with surgery there is a thread here as well as many posts in the surgery sub-forum that you may find helpful.
Good luck! I hope you feel better soon
Thank you both for the advice. .. today was actually the first time all week that I could actually eat any thing. I'm so tired of this. I have seeked help for my anxiety especially since the anxiety makes the pain worse. Unfortunately the anxiety meds that they put me on only worsened my symptoms. Not so much the pain but the exessive tiredness. I can't make it through a day with out falling asleep at my desk as it is, the medication only made it worse. They want to put me on colatapin but I really don't want it because it is highly addictive. Also there is no way mid panic attack I'm going to be able to open a pill bottle and take it. Not to mention when that happens it's not when I'm home. I have Googled things about crohns but have only read things off of official medical websites. When I saw my doctor two weeks ago, he told me that I was definitely going to need surgery. At this point it's just a matter of setting it up and finding out what actually needs to be done. I'm just tired of the run around at this point. The whole thing is just very depressing.
- Location
- London, UK
Hopefully the surgery will help you feel much better. I've experienced a lot of benefit from my surgeries to remove strictures - it's just that you often also need meds to prevent relapses, further surgeries and to avoid losing too much small bowel so you will likely have to face that decision after the surgery.
In the meantime I would ask your doctor to prescribe a complete nutrition drink like Ensure because this is good preparation for surgery. It helps you optimize your nutritional status which improves healing and reduces the risk of infections and abscesses. And a liquid diet - often referred to as exclusive enteral nutrition - actually reduces inflammation for most people with Crohn's so you will also be treating the disease and that's a good thing to do before surgery too as it can reduce the amount of bowel that must be resected, improve your chances of having the bowel successfully rejoined and puts you in a better position to be healthy after surgery.
Perhaps you could try working with a counsellor to find coping methods for when you experience anxiety? There might be breathing exercises or some sort of self-talk that would help you. It doesn't have to be meds! Cognitive behavioural therapy might help your anxiety.
When I was having severe pain from strictures, although nothing much relieved the pain, I did get a little relief from reflexology, massage and using heating pads.
The good thing about being in so much pain before surgery was that I thought the post-op pain was nothing!
Hope the surgery goes well. Do keep us updated!
In the meantime I would ask your doctor to prescribe a complete nutrition drink like Ensure because this is good preparation for surgery. It helps you optimize your nutritional status which improves healing and reduces the risk of infections and abscesses. And a liquid diet - often referred to as exclusive enteral nutrition - actually reduces inflammation for most people with Crohn's so you will also be treating the disease and that's a good thing to do before surgery too as it can reduce the amount of bowel that must be resected, improve your chances of having the bowel successfully rejoined and puts you in a better position to be healthy after surgery.
Perhaps you could try working with a counsellor to find coping methods for when you experience anxiety? There might be breathing exercises or some sort of self-talk that would help you. It doesn't have to be meds! Cognitive behavioural therapy might help your anxiety.
When I was having severe pain from strictures, although nothing much relieved the pain, I did get a little relief from reflexology, massage and using heating pads.
The good thing about being in so much pain before surgery was that I thought the post-op pain was nothing!
Hope the surgery goes well. Do keep us updated!