Hi Everyone, So i am new to this forum.. I have been diagnosed with crohns for nearly 6 years, and only really suffered in the last year.. I have been on steroids, 6mp, and now humira. My inflammation levels are not improving, even after being on humira for almost 5 months... My GI has suggested i consider surgery and this came as a complete shock! I have started getting pains through the night again, however not going to the toilet as much as before i started on humira. I have no energy what so ever and am really unsure as to what to do. My GI was hesitant to even start me on meds, so for him to suggest surgery seems extreme, but as my crohns is confined to a small area of my small bowel, he seems to think it will be the best course of action... Has anyone been in a similar position, where you arent really really bad, but the doctor has suggested this? HELP!
New here, confused...
- Thread starter tonim
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Hi. Yes I have been in a similar situation. However it did eventually get to the point where I was bad enough for me to want the surgery too. I had absolutely no energy by the end of it and have 3 little children so I needed to do something.
I too had an area of small bowel mainly affected. But my iron, stores, liver, haemaglobin and inflammation were all getting way out of control also.
So in April last year I had a resection. I ended up having 15cm of large bowel removed, 15cm of small bowel, my appendix, and my IC valve. I also had a further 30 cm of small bowel made wider through strictureplasty. I was very anxious and scared going into the procedure but it has turned out to be a huge success and I feel so much better. All my levels have come up too!! I have problems with D though now but there are many things that can help with that. I am now on natural pysllium husks which seem to be working well.
Trust me, it has really changed my life and is so worth discussing with your specialist further. Make sure you have a trusted surgeon and ask all the questions in the world.
I went private and it was a booked procedure so it was done mainly through laparoscopy. I have a 2 inch scar through my belly button and 3 small holes in the top centre, left side and lower left side. The operation took around 5 hours and the surgeon told me afterwards that it was so desperately needed as my bowels had stuck to the walls of everything else. There was also a fistula connecting the small and large bowel together.
Have you had an MRI?
I hope this helps a bit. It is very daunting but you will get there and it will work out. Hopefully your Specialist is good and you can ask him all sorts.
Feel free to ask me any more questions too. You will find this forum really good. We are all in the same boat and can talk about anything at all.
Good luck.
I too had an area of small bowel mainly affected. But my iron, stores, liver, haemaglobin and inflammation were all getting way out of control also.
So in April last year I had a resection. I ended up having 15cm of large bowel removed, 15cm of small bowel, my appendix, and my IC valve. I also had a further 30 cm of small bowel made wider through strictureplasty. I was very anxious and scared going into the procedure but it has turned out to be a huge success and I feel so much better. All my levels have come up too!! I have problems with D though now but there are many things that can help with that. I am now on natural pysllium husks which seem to be working well.
Trust me, it has really changed my life and is so worth discussing with your specialist further. Make sure you have a trusted surgeon and ask all the questions in the world.
I went private and it was a booked procedure so it was done mainly through laparoscopy. I have a 2 inch scar through my belly button and 3 small holes in the top centre, left side and lower left side. The operation took around 5 hours and the surgeon told me afterwards that it was so desperately needed as my bowels had stuck to the walls of everything else. There was also a fistula connecting the small and large bowel together.
Have you had an MRI?
I hope this helps a bit. It is very daunting but you will get there and it will work out. Hopefully your Specialist is good and you can ask him all sorts.
Feel free to ask me any more questions too. You will find this forum really good. We are all in the same boat and can talk about anything at all.
Good luck.
I suggest you avoid surgery unless you will die from not getting the surgery.... but I am in the same situation. I am currently taking Humira, it helps with the arthitis, but still get bad cramps. I don't like taking the steroids or opeids doctors love to perscribe, but i do smoke cannabis which is actually very helpful for ALOT of things... i am now convinced and applying for my Medical card and if get it, will be making Hash oil capsuls. Apparently 3 capsuls a day has been putting people with sever inflammation back into remision. NO SIDE EFFECTS...the THC and CBD's react in cell called cannaboids or something wich reduce inflammation. Check it out on google, youtube its all new research, but very interesting to see. And if there is an all natural cure out there i want to be a pioneer in discovering this out hehe 
anyhow, good luck with your disease and i hope whatever choice you make helps.
anyhow, good luck with your disease and i hope whatever choice you make helps.
David
Co-Founder
Hi Tonim and welcome!
Three things:
1. I suggest you take a hard look at enteral nutrition as a co-treatment option to help get things settled a bit.
2. I'm guessing your inflammation is confined to your terminal ileum. This is the part just before the colon and is also responsible for vitamin B12 absorption. Fatigue is a COMMON symptom of B12 deficiency. I'd strongly suggest asking for your vitamin B12 levels to be tested if they haven't. If they have, what was your level?
3. As long as you get your B12 levels checked, get your vitamin D and folate levels checked as well. Crohnies are commonly deficient in these and proper supplementation can make a big difference if you are indeed deficient.
I'm glad you joined. We're here for you anytime!
Three things:
1. I suggest you take a hard look at enteral nutrition as a co-treatment option to help get things settled a bit.
2. I'm guessing your inflammation is confined to your terminal ileum. This is the part just before the colon and is also responsible for vitamin B12 absorption. Fatigue is a COMMON symptom of B12 deficiency. I'd strongly suggest asking for your vitamin B12 levels to be tested if they haven't. If they have, what was your level?
3. As long as you get your B12 levels checked, get your vitamin D and folate levels checked as well. Crohnies are commonly deficient in these and proper supplementation can make a big difference if you are indeed deficient.
I'm glad you joined. We're here for you anytime!
Thanks everyone, your stories and input is so helpful... Butafli, your story does sound very similar... as does everyone's on here, which makes it so good to be able to see that i am not alone... I havent had an MRI, but my GI is talking about me getting one after my next scope, hopefully within the next few weeks. David, i havent heard much about eternal nutrition, but it was just suggested to me by my sister in law (another crohnie) so am looking into it and think it is a very good idea... Yes, as far as i am aware inflammation is confined to my terminal ileum... I never thought to have my B12 levels checked, but that makes sense. A trip to my GP is in order to have this all checked i think...
Thanks for making me feel so welcome and for your helpful advice, it is much appreciated!
Thanks for making me feel so welcome and for your helpful advice, it is much appreciated!
David
Co-Founder
Sounds great. Please keep us updated. When you get those results, be sure to get the actual numbers so you can begin to take control and monitor them yourself. It's very important in my opinion to do that.
Angrybird
Moderator
Hi Tonim, just wanted to say welcome to the forum. Definetly keep us updated on what the scope shows...I will always hope that things look a bit better/more treatable than expected. Wishing you well and sending hugs :hug:
Hi Tonim - I was diagnosed a year ago after suffering from some stomach pain that had previously been diagnosed as irritable bowel. Over the year my pain went from mild to moderate to severe. I was given prednisone, flagyl, Imuran and finally Humira in an attempt to treat; however, for me surgery became the only option. My Crohn's was in a small area in the terminal ileum.
Surgery was a complete shock for me as well and it is not a decision to take lightly. One note from my experience... I had been on prednisone for nearly 10 months before surgery as my GI tried to get the inflammation under control. Prednisone is not kind to your body. By the time I finally had the surgery, my tissue was so weak from the prednisone that I had to have a temporary ileostomy to allow the tissue to heal and be strong enough for a good resection and reduced risk of leaks.
My first instinct was to avoid surgery at all costs. In fact I could barely walk my pain was so bad by the time I realized it was a necessity for me. I'm not sure I would have done anything differently in retrospect; however, I do wish someone had told me the impact that long term steroid use would have on my body's ability to handle surgery - so I wanted to share my experience with you as you consider surgery.
My advice would be to talk with an actual surgeon who specializes in this type of surgery rather than just a GI. And also you would definitely want MRI, colonoscopy, etc before considering surgery. My surgeon was very helpful in ordering and explaining more detailed tests that eventually demonstrated my need for surgery.
If you do have surgery, my advice would be to get in the best shape possible beforehand. If you are well enough, strengthen your stomach and arm muscles as much as possible. After my surgery I realized how out of shape my arms were and how much I was relying on them to lift my body while my stomach was healing!
Best of health and well wishes to you!
Surgery was a complete shock for me as well and it is not a decision to take lightly. One note from my experience... I had been on prednisone for nearly 10 months before surgery as my GI tried to get the inflammation under control. Prednisone is not kind to your body. By the time I finally had the surgery, my tissue was so weak from the prednisone that I had to have a temporary ileostomy to allow the tissue to heal and be strong enough for a good resection and reduced risk of leaks.
My first instinct was to avoid surgery at all costs. In fact I could barely walk my pain was so bad by the time I realized it was a necessity for me. I'm not sure I would have done anything differently in retrospect; however, I do wish someone had told me the impact that long term steroid use would have on my body's ability to handle surgery - so I wanted to share my experience with you as you consider surgery.
My advice would be to talk with an actual surgeon who specializes in this type of surgery rather than just a GI. And also you would definitely want MRI, colonoscopy, etc before considering surgery. My surgeon was very helpful in ordering and explaining more detailed tests that eventually demonstrated my need for surgery.
If you do have surgery, my advice would be to get in the best shape possible beforehand. If you are well enough, strengthen your stomach and arm muscles as much as possible. After my surgery I realized how out of shape my arms were and how much I was relying on them to lift my body while my stomach was healing!
Best of health and well wishes to you!
Thank you so much for your reply, OnMyOwn. I spent from June until December last year on Pred, so i appreciate your comments on this. I have been off them for almost 3 months, so hopefully this will be ok. I am seeing my GI again tomorrow, as i have gotten worse since i last posted.... Maybe i was in a little denial about how bad i really am... I have had terrible pain and blood is back... I also spent the weekend with D, even though i tried to go with a liquid diet to give things a break... Hopefully after seeing my GI tomorrow, i will be able to get my MRI & colonoscopy organised rather quickly.. I dont want to go back on steriods, so hopefully we can move fast and get the surgery under way... I do believe that this will be my best chance of improving things for the time being... Just a very scary thought, as i have never had surgery before.
David
Co-Founder
That's great! Take care!
Great news Tonim! The colonoscopy will be a great step in getting the information you need to make the decision of whether to pursue a surgical option.
Denial has been a big part of this disease for me. First, denial kept me from join to see a GI, even when I was pretty sure my symptoms were more than just a case of irritable bowel. In the month or two leading up to my surgery, denial made me question whether I really needed to take this drastic step. After all, I was getting on a plane every week for work, I was active - how sick could I possibly be? But then I realized that it was not 'normal' to be in so much pain that I couldn't speak, it wasn't 'normal' to have fevers every day. Sometimes being in a constant state of pain or suffering allows us to redefine normal. Though my life hasn't been perfect in the few months since my initial surgery, I can say that I now realize that I was suffering badly and that it is absolutely amazing to be able to eat a meal without pain afterward!
Good luck on Wednesday. I'll keep you in my thoughts as Wednesday is also my prep day before my second surgery (They're finishing up the resection that they couldn't finish due to the steroids and reversing my temporary ileostomy - yay!)
Denial has been a big part of this disease for me. First, denial kept me from join to see a GI, even when I was pretty sure my symptoms were more than just a case of irritable bowel. In the month or two leading up to my surgery, denial made me question whether I really needed to take this drastic step. After all, I was getting on a plane every week for work, I was active - how sick could I possibly be? But then I realized that it was not 'normal' to be in so much pain that I couldn't speak, it wasn't 'normal' to have fevers every day. Sometimes being in a constant state of pain or suffering allows us to redefine normal. Though my life hasn't been perfect in the few months since my initial surgery, I can say that I now realize that I was suffering badly and that it is absolutely amazing to be able to eat a meal without pain afterward!
Good luck on Wednesday. I'll keep you in my thoughts as Wednesday is also my prep day before my second surgery (They're finishing up the resection that they couldn't finish due to the steroids and reversing my temporary ileostomy - yay!)
Very Good News!!!! Good luck with it all. Good news also that you are off the prednisone. That's one thing I was still on going into surgery and the healing time afterwards is not as quick. But I did find the recovery was not as bad as a lot of others I have read about so that's reassuring also. I agree totally with speaking thoroughly with a reputable surgeon, not just your GI. They each have their specialised areas so know more about different things.
Good luck.
Good luck.
Angrybird
Moderator
Really pleased you have managed to get the scope booked so quickly. Good luck and keep us updated.
Update... So i saw my GI on Tuesday and had my scope yesterday... All went well, inflammation is confined to my small bowel, however is badly inflamed at present, and they think there may be a stricture, but as the inflammation was so bad, could not determine if this is definately the case. Looks like surgery will be within the next few weeks, my GI has aleady been discussing my case with the surgeon (who is the best in town!! ), so surgery will be happening pretty quickly. I am starting to get a little scared now, at the reality of it all, however am looking forward to hopefully feeling better after the surgery! Going for a CT scan next week, then back to see my GI, hopefully by then, i will have a surgical consult. My GI said he is treating it as semi-urgent so wont be long to wait....
), so surgery will be happening pretty quickly. I am starting to get a little scared now, at the reality of it all, however am looking forward to hopefully feeling better after the surgery! Going for a CT scan next week, then back to see my GI, hopefully by then, i will have a surgical consult. My GI said he is treating it as semi-urgent so wont be long to wait....I recently went to an IBD informational seminar which a well known GI specialist spoke (Dr. George from Colombia). He stressed to us that even though surgery sounds scary, it is a treatment option. Sometimes, it is the best treatment option to induce remission. I hadn't thought about it that way before. It always seemed like something we all try to avoid (almost) at all costs. So if surgery is the best option for you, there shouldn't be any reason not to go for it. Best of luck!
Angrybird
Moderator
Thanks for the update Tonim, it's good that your doc is getting things moving fairly quickly. I had surgery for a stricture and it went a lot better than I thought it would, the docs always try to do these ops laparascopically and that really helps with recovery etc. Keep us updated on things hun.
Hi Tonim - I also had a stricture. It can be very painful and I'm not sure there are any 'magic' tricks, but here are a few things that helped me while I waited for surgery:
1. If you are not already, be sure to stick to a low residue diet. No salads, no nuts, no raw veg or fruit. Basically stick to soft foods that digest well (no skins, seeds, etc.). If your pain is considerable you may also consider a liquid diet for some temporary relief.
2. As far as getting a peaceful night's sleep... try not to eat right before bed and try eating smaller lighter meals (especially in the evening). Eat smaller amounts throughout the day instead of three big meals.
3. Pain killers can also help. Not a long term solution, but there were several times I probably would have headed into the ER if I did not have serious pain meds and a surgery date scheduled.
4. My stricture was in my terminal ileum, so most of my pain was in my lower right abdomen. As my pain grew worse, I found some support in sleeping on my side with a pillow between or under my legs for support. This was just my experience.
Remember that a stricture is basically a narrowing of the digestive path. So anything you can do to reduce the bulk of items that have to go through the stricture area should provide you with some relief.
I hope your CT scan went well. Take note: if you had to drink the lovely barium contrast for your scan you will feel the effects for a while. The gritty substance that allows them to get a better picture is pretty rough on your digestive system and can be painful as it moves through your already tender digestive system. Not pleasant, but a necessary evil to get you a good diagnosis and on the path to recovery!
Best wishes!
1. If you are not already, be sure to stick to a low residue diet. No salads, no nuts, no raw veg or fruit. Basically stick to soft foods that digest well (no skins, seeds, etc.). If your pain is considerable you may also consider a liquid diet for some temporary relief.
2. As far as getting a peaceful night's sleep... try not to eat right before bed and try eating smaller lighter meals (especially in the evening). Eat smaller amounts throughout the day instead of three big meals.
3. Pain killers can also help. Not a long term solution, but there were several times I probably would have headed into the ER if I did not have serious pain meds and a surgery date scheduled.
4. My stricture was in my terminal ileum, so most of my pain was in my lower right abdomen. As my pain grew worse, I found some support in sleeping on my side with a pillow between or under my legs for support. This was just my experience.
Remember that a stricture is basically a narrowing of the digestive path. So anything you can do to reduce the bulk of items that have to go through the stricture area should provide you with some relief.
I hope your CT scan went well. Take note: if you had to drink the lovely barium contrast for your scan you will feel the effects for a while. The gritty substance that allows them to get a better picture is pretty rough on your digestive system and can be painful as it moves through your already tender digestive system. Not pleasant, but a necessary evil to get you a good diagnosis and on the path to recovery!
Best wishes!
Finally an update - I have been referred to a surgeon, so hopefully will hear from them within the next week. My GI said that the surgeon will move fairly quickly, so here's hoping... My pain and sleeplessness is getting ridiculous and i just want this to happen now, so i can get back to "normal" - whatever that may be The CT scan and scope showed that my inflammation is confined to a small area in my small bowel, so surgery will be very successful!
The CT scan and scope showed that my inflammation is confined to a small area in my small bowel, so surgery will be very successful!
Angrybird
Moderator
Good to hear from you hun, I am pleased that tests have all confirmed that it is a small area that is being affected. Let us know how you get on with the consult with the surgeon. Things have been moving quite quick so it would be great if they could continue to so we can be hearing that you are doing well again, sending hugs for that nasty pain! :hug:
Finally an update I have been booked for surgery for the 4th April, only two weeks away!! I am absolutely pertrified, as well as anxious for it to happen, so i can look forward to getting my life back... To a degree! I understand that this will not be a cure, but at the moment, i have no life, as crohns is in control of me!! Bring on the surgery I say!! I have the lovliest surgeon, and he is apparently the best in town, so i feel like everything is going to work out ok! Ill keep you all updated, thanks for your advice & stories, it really does make this easier to face, knowing all you guys are there for support!
I have been booked for surgery for the 4th April, only two weeks away!! I am absolutely pertrified, as well as anxious for it to happen, so i can look forward to getting my life back... To a degree! I understand that this will not be a cure, but at the moment, i have no life, as crohns is in control of me!! Bring on the surgery I say!! I have the lovliest surgeon, and he is apparently the best in town, so i feel like everything is going to work out ok! Ill keep you all updated, thanks for your advice & stories, it really does make this easier to face, knowing all you guys are there for support!
David
Co-Founder
That's great and it's understandable that you're scared. I certainly would be I'm sure everything is going to go smoothly though!
I'm sure everything is going to go smoothly though!
Angrybird
Moderator
Thanks for the update hun. Surgery can certainly be daunting, I had my first op last year and it did go a lot better than I thought it would so I will keep my fingers crossed that is the same for you
